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Additional
WWW Resources and Information:
Some Information on Intravenous
Immunoglobulin for post-polio syndrome is here.
-----
Subject Polio Today from The Salk Institute
From "Dan" <dan_32312@yahoo.com>
Please come join us at http://www.poliotoday.org for the most up to date
information and resources for polio survivors and families.
-----
Subject More on CIL's.
From Ppsofsouthfl@aol.com
Below is an easier link to find the Center for Independent Living
closest to you.
http://www.bcm.edu/ilru/html/publications/directory/index.html
The Centers all have grant monies available now to transition people
with disabilities out of a nursing home into a community setting so
they often call on someone to suggest and/or do home modifications.
They may also have volunteers that do this for free.
I find it terrible that monies are not available to keep people out of
nursing homes too.
If you have to go to a Nursing Home after a surgery or accident, then
would be the time to check out if you are eligible for this assistance.
Monies often cover new furniture needed, assistive devices, home
modification and even some personal care assistance.
This varies by CILs. which are each independently run by a Board of
Director's of which greater than 50% must have a disability themselves.
Check on what other services they have too.
They often have used scooters, wheelchairs, etc. to give you.
Best Wishes.
Barb Gratzke
-----
Subject osteoporosis
From Scott <srg112646@COMCAST.NET>
Hi, Ruth!
My opinion, as a nutritionist, is that you can do as well with natural
remedies as with the medicines. As you said, the quality of the bone
should be even better than when using the meds.
But you have to take more than calcium and vitamin D.
1) Be sure you buy calcium citrate or calcium malate, instead of calcium
carbonate. Those forms are absorbed better in people with poor digestion.
2) Also take at least HALF as much magnesium as you take of calcium.
For instance, if you take 1000 mg. of calcium, you need at least 500 mg.
of magnesium. Often people with PPS find they have more energy if they
take 600 or even 800 mg. of magnesium. Start with a lower dosage, split
into half twice a day, and work up gradually to your target dosage.
Again, magnesium citrate and magnesium malate and magnesium aspartate
are better absorbed than magnesium oxide.
3) You can find these forms of calcium and magnesium at
www.vitacost.com, very reasonably priced. Also good but more expensive
is www.vrp.com.
4) Other minerals and vitamins are required for your body to build
healthy bones, so you need to eat super-healthy and/or take a GOOD
multi-capsule multivitamin/mineral. The Synergy multis at vitacost.com
are great! But there is a cheaper one that is pretty good, too:
http://www.vitacost.com/NSI-NutriSlim-Low-Carb-Dieters-Basic-Multi-Vitamin-Ver-2.
Notice that if you take the recommended 3 per day, each bottle lasts 2
months.
5) Finally, you will probably still not have maximum bone-building
unless you take some form of hormones. The above nutrients will slow
down the bone loss, but not reverse it.
a)To get results as effective as drugs, most post-menopausal
women need to take 10 to 50 mg. of DHEA, orally. Start with 10 mg.,
then order 25mg. for your 2nd botttle - and see which makes you feel
better : more energy, better mood, etc., without any side effects (which
would be acne and facial hair, sometimes hot flashes or a tendancy to
get upset). If you don't notice any difference with those amounts, then
try 50 mg.
b) Also, you will need some NATURAL progesterone. Doctors can
give you oral prescriptions for this, but they tend to give
prescriptions for SYNTHETIC progesterones (also called progestins),
which are NOT at all the same thing, chemically. They can be harmful,
whereas the natural progesterone doesn't seem to be - as far as side
effects.
I use a natural progesterone cream, that you don't need a prescription
for. There is a lot of evidence that taken over a year or two, it can
reverse bone loss, but there is also some new evidence that it doesn't.
I take it just in case, and also because it helps me with anxiety:
http://www.vitacost.com/Source-Naturals-Natural-Progesterone-Cream.
6) As far as diet is concerned, once you are supplementing with the
minerals and vitamins above, it also helps to get a moderate amount of
protein. Both too much and too little is bad for the bones. I
recommend between 50 and 90 grams a day. Plant protein, like beans and
soy, is better than animal protein. Also, the more fruits, veggies and
nuts you eat, the better for your bones. Avoid all carbonated soft
drinks, too much salt, too much caffeine, and keep your sugar intake
low, and you should be in great shape, bonewise!
7) BE SURE AND CONSULT WITH YOUR DOCTOR BEFORE TAKING ANY NUTRITIONAL
SUPPLEMENTS!
Debbie G.
----- Original Message ----- Does anyone know if
taking vitamin D and calcium can be as helpful as the drugs?
Ruth
-----
Subject See doctors speak on proper PPS breathing & sleep treatment
From Ppsofsouthfl@aol.com
Go to _www.poliotoday.org_ (http://www.poliotoday.org) to see the
doctors speeches at the Salk Institute Nov. 1, 2009 Symposium.
The web masters are franticallly
working to keep the videos available as there has been
such a demand for viewing. You may have to try more
then once to view.
Warm Regards to all.
Barb G.
IPPSO
-----
Subject International Post Polio Conference Wellness
From "Patrick Kelly" <pkelly03@sprynet.com>
Recently 8 videos have been put on YouTube..... from the Warm Springs
Post-Polio Conference in April 2009.
The Ohio Polio Network has put links to these videos on their links page.
http://www.ohiopolionetwork.org/id7.html
Pat Kelly
-----
Subject Re- Pain Management in the U.S.
From Hilary Boone <hilary.boone@LINCOLNSHIREPOSTPOLIO.ORG.UK>
<snip>
I do not know if this is relevant to all peripheral neuropathy but a
physiotherapist told me that our foot muscles are the pump to send the
blood back to the heart. If these muscles are weak then the waste
products can pool in the feet and to get our feet up as often as
possible.
I took this on board and have printed this more than once in our
newsletters and it really does help many of our members. Any day that
I am unable to recline my chair when I sit down [at meetings, driving,
flying, out for the day on scooter] then I have a hard time in the
evening, burning pains and jumpy muscles [fasciculations].
The difference is about 95% improvement.
This may just work for folks with weak leg muscles.... I would be
interested in knowing if you have tried this/try this and if it has or
does help you.
Hilary.
-----
Subject Re- KAFO Brace Alternatives
From Gillian Thomas <gillian@POST-POLIONETWORK.ORG.AU>
Hi
I thought that those interested in this topic might like to read some
articles published in our newsletter, Network News, over the last few
years.
I have extracted the relevant pages and uploaded them to our website
(PDF format). Just click on the links below to download them.
http://www.post-polionetwork.org.au/news/NN_58_pp3-10.pdf
http://www.post-polionetwork.org.au/news/NN_73_pp9-18.pdf
http://www.post-polionetwork.org.au/news/NN_78_pp6-7.pdf
Cheers
Gillian
Gillian Thomas
President
Post-Polio Network (NSW) Inc
Sydney, Australia
-----
Subject Have you seen site?
From Post-Polio Health International <director@POST-POLIO.ORG>
http://poliotoday.org/
-----
Subject White House Disability Site
From Ginger <rainingwolf@GMAIL.COM>
*From "New Mobility" Magazine:*
Feds Launch New Disability Website
August 2009 As part of its observation of the 19th anniversary of the
ADA, the United States Department of Labor announced the launch of
Disability.gov<http://disability.gov/>, a comprehensive website for
information on federal programs serving people with disabilities.
Replacing the site formerly known as DisabilityInfo.gov, the new site
also includes social networking tools, a blog and a Twitter feed.
Visitors can also sign up for personalized news and updates.
Disability.gov is a meeting ground for Americans to learn, respond and
communicate about a wealth of critically important disability-related
topics,=94 said Secretary of Labor Hilda Solis. The new site has been
vastly enhanced to provide more information in as efficient and
interactive setting as possible.
The Americans With Disabilities Act:
To Boldly Go Where Everyone Else Has Gone Before.
GingerC
rainingwolf@gmail.com
-----
Subject Novels about Polio
From "Judith Pipher" <Pipher@execpc.com>
Here is a more detailed list of our books....
WALKING FINGERS: THE STORY OF
POLIO AND THOSE WHO LIVED IT A Canadian History, Edited by
Helen D"Orazio, Sally Aitken and Stewart
Valin -36 Stories of polio survivors & care givers
TO CATCH THE SNOWFLAKES:
Memoir of a Polio Survivor, and Adoptive Parent, A High School
Principal, and a Father of an Addict by Lawrence J. Schulenberg
COME SMILE WITH ME: From the Heart of a Polio Survivor by Peter Thwaites
THREADS OF MEMORIES My Tragic But Fascinating Life by Arlene Roanhaus
FDR'S SPLENDID DECEPTION by Hugh Gregory Gallagher
BREATH: LIFE IN THE RHYTHM OF AN IRON LUNG - A Memoir by Martha Mason
IN THE SHADOW OF POLIO by
Kathryn Black In l954,, Black's mother was
stricken with Polio.
A NEARLY NORMAL LIFE by Charles L. Mee Memoir
Life changed in July 1953 with polio - became playwright and author
BEHIND ENEMY LINES, A Memoir
by John Durand, A Wisconsin Author Stricken in 1942
SURPRISED BY L0VE - 34 Short
stories of love and support by polio survivors
GERHARD F. MILLER, His Life,
His Poetry, His Philosophy And His
Paintings - by his wife Ruth Morton Miller
THE LITTLE RED CHAIR - by Alan
A. Malizia Author stricken by polio in 1954.
ROLLING ON - by Gerald W.
Hankins The story of Gary McPherson, a 55
year old post polio survivor.
SMALL STEPS: THE YEAR I GOT
POLIO by Peg Kehert In 1942, Peg was l2
yrs. old when she contracted respiratory polio.
WOUNDED DOVE by Virginia
Heslinga A true story of courage, hope,
faith, and love.
7 WHEELCHAIRS A LIFE BEYOND
POLIO by Cary Presley Polio at age l7
in l959, now 67
LUCKY ONE MAKING IT PAST POLIO AND DESPAIR by Richard Maus
POLIO & US PERSONAL
STORIES OF POLIO SURVIVORS IN IRELAND Compiled
and Edited by Nuala Harnett.
ROUND TRIP TICKET TO HELL by
Jack Mason He learns post polio
syndrome will take him back to beginning.
SUCKING AIR, DOING WHEELIES:Memoirs of a Fifties Polio Survivor
BLUE by Joyce Moyer
Hostetter A novel good for all ages l944-45. Little brother gets
polio & dies then l3 yr. old Ann Fay gets polio.
Very well written
COMFORT by Joyce Moyer Hostetter Continuation of Ann Fay's story
CLIMBING KILIMANJARO AN AFRICAN ODYSSEY by Helen Bergan
--
Subject More polio books
From Brenda <alldolphin4@yahoo.com>
Healing the Blues by Dorothea Nudelman and her therapist David Willingham
Another one is A Paralyzing Fear The
Triumph Over Polio In America by
Nina Gilden Seavey,Jane S. Smith, Paul Wagner
I have read these and they are
very good to read about the history,
treatment and how people deal with the disabilities from polio.
Brenda
-----
Subject Fatigue in Post-poliomyelitis Syndrome: ...
From Scout <Scout@SKALLY.NET>
PM &R. ( (The Journal of Injury, Function and Rehabilitation) 2009
May;1(5):442-9.
Fatigue in Post-poliomyelitis Syndrome: Association With Disease-
Related, Behavioral, and Psychosocial Factors.
Trojan DA, Arnold DL, Shapiro S, Bar-Or A, Robinson A, Le Cruguel JP,
Narayanan S, Tartaglia MC, Caramanos Z, Da Costa D.
Department of Neurology and Neurosurgery, Montreal Neurological
Institute and Hospital, McGill University Health Centre, McGill
University, 3801 University St., Montreal, Quebec, H3A 2B4,
Canada(dagger).
OBJECTIVE: To determine the biopsychosocial correlates of general,
physical, and mental fatigue in patients with postpoliomyelitis
syndrome (PPS) by assessing the additional contribution of
potentially modifiable factors after accounting for important
nonmodifiable disease-related factors.
It was hypothesized that disease-related, behavioral, and
psychosocial factors would contribute in different ways to general,
physical, and mental fatigue in PPS and that a portion of fatigue
would be determined by potentially modifiable factors.
DESIGN: Cross-sectional study.
SETTING: A tertiary university-affiliated hospital post-polio clinic.
PATIENTS: Fifty-two ambulatory patients with PPS who were not
severely depressed were included.
ASSESSMENT OF RISK FACTORS: Potential correlates for fatigue included
disease-related factors (acute polio weakness, time since acute
polio, PPS duration, muscle strength, pain, forced vital capacity,
maximum inspiratory pressure, maximum expiratory pressure, body mass
index, disability, fibromyalgia), behavioral factors (physical
activity, sleep quality), and psychosocial factors (depression,
stress, self-efficacy).
MAIN OUTCOME MEASUREMENTS: Fatigue was assessed with the
Multidimensional Fatigue Inventory (MFI; assesses fatigue on 5
subscales) and the Fatigue Severity Scale (FSS).
RESULTS: Multivariate models were computed for MFI General, Physical,
and Mental Fatigue.
Age-adjusted multivariate models with nonmodifiable factors included
the following predictors of (1) MFI General Fatigue: maximum
inspiratory pressure, fibromyalgia, muscle strength; (2) MFI Physical
Fatigue: maximum expiratory pressure, muscle strength, age, time
since acute polio; and (3) MFI Mental Fatigue: none.
The following potentially modifiable predictors made an additional
contribution to the models: (1) MFI General Fatigue: stress,
depression; (2) MFI Physical Fatigue: physical activity, pain; and
(3) MFI Mental Fatigue: stress.
CONCLUSIONS: PPS fatigue is multidimensional. Different types of
fatigue are determined by different variables. Potentially modifiable
factors account for a portion of fatigue in PPS.
PMID: 19627931 [PubMed - in process]
-----
Subject Re "Sleep Apnea"
From "Judith Pipher" <Pipher@execpc.com>
OK... "Sleep apnea" is a clinical condition. It is also a generic term
for ANY sleep/breathing disorders and is such is very much MIS-used,
even by polio drs. The big probelm with calling everything "sleep apnea"
is that it generates the wrong treatment modality for us.
Sleep Apnea is a condition where the airway collapses during sleep and
breathing actually stops. There are 2 kinds of apnea - central (brain
signal cause) and the other I cannot remember, but it is a mechanical
problem, as opposed to neural. Apnea is frequently found in heavy
smokers, people with lung damage, obese people, etc..
One other sleep/breathing problem is hypopneas. This is where the
breathing slows or becomes too shallow to maintain a healthy blood
oxygen level.
There can be many causes for this. In many polio survivors it is caused
by weakened neuro-musculature of the oblique abdominal muscles,
sometimes compounded with weak diaphragms or intercostal muscles (those
that expand & contract the ribs).
The big difference is the treatment modality. apnea is treated with
drugs and/or a CPAP machine (Constant Positive Airway Pressure). The
purpose of the CPAP is to prevent the airway from closing during sleep.
It is ALWAYS blowing air into your lungs at a more or less steady rate.
The reason this is a problem for us is those weak abdominal muscles.
When we lie down, the oblique abdominal muscles take over for much of
the function of the diaphragm (diaphragm works with gravity when we are
upright). These muscles were one of the first to go when we had polio,
especially for those who had Bulbar type polio. As a result we do not
breathe deeply enough often enough and our O2 levels drop. But having
air forced into our lungs at a steady rate can suffocate us because we
do not have the strength to breathe out against this force. Breathing
out is crucial because this is how we get rid of CO2. Our bodies take
the O from the O2 and expel the CO2.
The treatment modality that most of us need is a BiPAP (Bi-level
Positive Airway Pressure) machine. This machine assists our inhalations
with air pressure, similar to the CPAP, but then it drops the pressure
to a negligible level to allow us to comfortable exhale. This must be a
comfortable level so that our muscles will work when we are asleep -
mine is set at "3" for exhalation ("expiration") and at 13.5 for
"inspiration", but everyone's levels can vary.
- JB
-----
Subject Re Just joined
From Steve's Account <stevel@FERN.COM>
Hi, Gennady,
The place I'd recomend starting your search for information is:
<http://www.post-polio.org/>
And especially:
<http://www.post-polio.org/edu/handbk/index.html>
While Dr. Bruno has a number of devotees, I find quite a
number of his conclusions "interesting"...
I find that the information provided by the above handbook to be,
in my opinon, a bit better balanced.
Here's a web page that's a good place to start:
<http://www.post-polio.org/edu/pabout.html>
Also follow the links at the bottom of the page.
I guess, my first bit of advice would be... You are going to read some
things
that will be a bit frightening, if you automatically assume that EVERY ONE
of these things WILL happen to you.. The fact is....tomorrow will be
much like the today.. and the day after that will be much like tomorrow..
Don't PANIC! :-)
What ever is going to happen will happen quite slowly.. and the fact
that you are aware of them won't make them happen any sooner.
Where you end up, depends an awful lot on where you started.
You will learn things that will help you be aware of what might happen..
and be able to do things that are likely to minimize what may happen.
There doesn't seem to be any "magic bullets" that affect the course
significantly..
There are some things that seem to be counter productive..
Starting a hurculean exercise program in an attempt to stave off what
ever might be happening is probably not a good idea. Exercise, in
moderation, so as not to cause excessive fatigue or pain is probably
a good thing. But.. if what was easy and non-fatiguing for you a year
ago, is now difficult.. Modify what you are doing to keep it in the
"easy and non-fatiguing" range.
Finding a physician who knows about post polio can be a big help.
There are still a few around.
Not everyone who had polio is affected by post polio syndrome to the
same degree. It appears that about 1 in 4 polio survivors will experience
the symptons described as PPS.
Read some of the resources posted.. and ask questions..
And .. welcome to the group.
Steve
-----
Subject Polio Pioneer Helps Survivors Hold On To Strength : NPR
From "GG Genereau" <genereau@vbe.com>
Here's an interesting article about Dr. Lauro Halstead and PPS.
I have had the privilege of serving on several panels at PHI (GINI)
Conferences in St. Louis with Dr. Halstead over the past twenty-some
years. He often uses himself as a "test subject". He discovered that as
a polio survivor he needed much more protein in his diet. I remember
sharing a Pepsi one morning with him at a conference. Just a few months
later after discussing the empty calories of our morning beverage, he
was working with a dietician on formulating a PPS diet. He presented his
findings at the next PHI conference.
I remember him discussing his feelings of going to a scooter and then
powerchair, and a ventilator. It's much easier to describe my own
feelings to someone who truly understands what I might be experiencing.
He's truly a "pioneer" in many ways!
GG in WI
http://www.npr.org/templates/story/story.php?storyId=103892252&ft=1&f=1007
-----
Subject Novels about polio
From rettortl@netscape.net
Greetings fellow PPS friends,
I have been a member of this group for years, but have remained in the
background for most of that time.? I am writing you today to tell you
about two novels that deal with polio in the 1940s.? I had polio in
1936, at the age of 11 months.? I went to Warm Springs in 1937, and had
13 operations and a lot of PT for the next 12 or so years.
An author named Joyce Moyer Hostetter has written two novels about a
young 14 year-old girl named Ann Faye Hunnicut, who lives just outside
of Hickory North Carolina.? The first of these novels tells of her
getting polio in 1945, and
participating in the so-called "Miracle at Hickory," during which a
hospital was constructed in tents, complete
with doctors, nurses and equipment almost overnight.? Ms. Hostetter won
several awards for this novel, which is titled Blue.
The second novel is a sequel to Blue, and is titled Comfort.? Comfort
continues Ann Faye's story, much of
which is set at Warm Springs in 1946.? I served as the Warm Springs
technical advisor to Ms. Hostetter on Comfort, and she gave me the
honor of including my mother, who worked at the Georgia Warm Springs
Foundation while I was a polio there, as a
character in the novel.? I also have a "walkon" part in the novel.
Both Blue and Comfort are suitable
for teenage to adult readers.? The
publisher is Calkins Creek, Honesdale PA.
Charles Leon Trotter
----
Subject Twin
Voices
From
Richard Daggett <richarddaggett@CA.RR.COM>
I just finished reading Twin Voices.
This is a book by Janice Flood Nichols, whose twin brother died of
polio in 1953 at the age of six. The day he was buried Janice also
contracted polio. I've read many polio related books, both first person
accounts and medical/ academic/ historical. Janice weaves all of this
into one book. I highly recommend it.
Richard
-----
Subject
Shades of Grey Post Polio Syndrome
From
"Marilyn" <marilynkcgw@yahoo.com>
The Polio Network Victoria, Australia
is a free service that provides relevant and accessible information,
referral and support services to people who have had Polio, their
families, carers and advocates.
There are 25 videos to view be sure
to start with number 1.
http://www.youtube.com/profile?user=PolioNetworkVictoria&view=videos
-----
Subject Info
for Doctors
From
"Judith Pipher" <Pipher@execpc.com>
Here is the URL for the March Of
Dimes brochure for medical personnel.
You may have to go to March Of Dimes,
then to Professionals & Research, and then to Post-Polio to get it,
but it is there.
http://www.marchofdimes.com/files/PPSreport.pdf
- JB
-----
Subject Re: Info for doctor?
From PPRG <together@pprg.org>
There are a lot of good books and resources available, but doctors don't
often have time to read a whole book. Dr. Henry Holland has a series of
topical articles that may serve the purpose. Find them online here:
<http://www.ott.zynet.co.uk/polio/lincolnshire/library/cc_2.html>
If your doctor is willing to look at a book, I recommend the one by Dr.
Lauro Halstead. See more on it here:
<http://www.nrhrehab.org/About+NRH/Publications/414.aspx>
You can also contact Post-Polio Health International for their handbook
<http://www.post-polio.org/edu/handbk/index.html>
Hope this all helps.
Michael
--
From "judith_ann59" <judith_ann59@yahoo.com>
Thank you, Michael, there is some great info there I can use.
Judith, is this the brochure you're talking of?
http://www.marchofdimes.com/files/p-psbro.pdf
I'll take that to the doc, too, and many thanks. Judith
-----
Subject Driving
From Beverly <bb_dutchess@yahoo.com>
My input...I drove for a living and
taught Defensive driving with the
National Safety Council. There isnt anything that I havent driven.
I am 71 and have never had an
accident or ticket. What does that mean...well it means I am closer to
having an accident than ever before. My reaction time is slower and if
I am carrying on a conversation I am sure to miss my turn offs. Being
aware of your limitations is the
smartest thing anyone can do.
I drive as often as possible, I drive
the speed limit I concentrate on
using my signals and I keep my headlights on when driving...daytime too.
There are days that I can go a short
trip and thats it, I let my younger
sister drive...she is 51.
I make maps of where I am going and I
make sure I know the routes I have to take. I also look up alternate
routes, just in case I have to go a different way back.
Folks, if you are still driving there
are ways to be a safer driver as we age. A good rule is to never be the
first one into an intersection and to keep your foot over the brakes
when driving thru one if you have the green light. It just gives you
that extra fraction of time to maybe avoid a accident or kid on a bike
with headphones yup, that did happen
to me, lucky kid.I have lots of hints but no time right now, G*d bless,
Beverly
-----
Subject Re: SS Disability
Sarah <sarahbee@OLDWIZ.NET> wrote:
Is there a fast track for SSI or disability?
has anyone been through this process recently and can give him some
>
tips on how to get this on the fast track???
From Verleen <rstandis@NYCAP.RR.COM>
I've never heard of a fast track, but my application and approval went
smoothly. I applied in July 2001, was quickly approved and began
receiving benefits in October 2001. I applied for disability under
POMSDI 24580.01 for "The Late Effects of Poliomyelitis". I read all I
could find about SSDI and how the SS evaluates a person for disability
under this POMS. All these rules and regs are on the internet. I also
provided medical documentation along with my application. Do not rely
on the SS office intake person to know any of this. You must know it
and provide what the SSDI reviewer at another location will be looking for.
The SSDI rules say the best doctor's report would be from a physiatrist,
who is knowledgeable about polio. Not all physiatrists are correctly
knowledgeable about PPS, nor know anything about how prepare a report
for SSDI. It is helpful if the doctor has, or is provided by you, an
understanding of the medical data they are looking for, the restrictions
in ADL, etc. It is also helpful if you saw the doctor recently before
filing. An EMG and nerve conduction studies are helpful to document your
condition. The SSDI reviewer will follow a listing criteria for polio
(11.11) to determine if you meet or equal the listing. Under this
listing they consider fatigue and loss of endurance (tested); weakness;
pain (bursitis, tendonitis); and cold intolerance. The doctor should
use the code 1380 to record the diagnosis.
If you have been working, then you need to be evaluated under DI
24005.005 to document that you are experiencing new functional problems
which are preventing you from continuing to work. In my case, the EMG
showed recent weakening in muscles that affected my ability to continue
to work.
I found that I had little control over what the SS local office intake
person was documenting. I knew he was missing key elements that the
reviewer would be looking for. He just did a "form" type of intake.
So I wrote a letter that accompanied my application, in which I
provided the elements that specifically kept me from working. These
included the overwhelming fatigue that caused me to work less than half
my work schedule. When I did make it to work, I had trouble
concentrating and needed to lay down frequently. I described the pain
in my back, shoulders, neck arms, hips, and ankles which often kept me
from standing or getting ready for work. I further described how the
cold winter months exaccerbated all the above symptoms. I documented
my falls at work and inability to safely drive to work.
I should tell you that I saw Drs. Bruno and Zimmerman who campaigned for
and wrote the SSDI rules for "The Late Effects of Poliomyelitis". So
they knew exactly how to examine me, which appropriate tests to do and
how to write the medical report. Verleen
--
From Mary <leckie92@YAHOO.COM>
I applied for disability last January and was approved in May. I had
polio in 1945 at 11 months of age, and developed PPS in 2000 after a
really hard fall. My doctor thought I was approved because I answered
each question in great detail. I explained what my job had been, and
the physical activity I had always done as part of my jobs. I stated
which activities I could no longer do and said that I could not
effectively do my job. I supervised the public service section of a
state library and did a lot of walking. I specified which activities I
was having trouble with.
I was notifed that I had an appointment with a doctor, but then they
cancelled it. I think my doctor is one of their examining physicians
for PPS, so when they got his records, they did not require the other exam..
I was very surprised when I was approved on the first try. Two of the
doctors who had performed surgery on me are dead, so I didn't think
there was a chance. I believe it also depended on my doctor's detailed
notes on every visit. His reports, along with my history worked for me.
Mary
--
From Mark <mvlange92650@COMCAST.NET>
I went thru this in late 2007. Several useful links to information I
referred to are provided below.
Did it on my own, following suggestions in
http://www.post-polio.org/edu/handbk/socsec.html and
http://www.englewoodhospital.com/medservices.cfm?pageid=425&bc=0,8,158,198
Also very useful is the actual ruling/rules for SSDI DI 24580.010
Evaluation of the Postpolio Sequelae
I had my wife take me to the local Social Security office, to have an
interview and assistance filling out the application. I brought my work
and medical history (up to that point), test results, doctors names,
addresses, phone numbers, dates seen, etc, with me and provided a copy
of all of that info.
After the application was processed and I received a letter regarding
the person assigned to my case, I wrote a letter to my case person
regarding PPS and enclosed a copy of the SSDI rules for evaluation of
Postpolio Sequelae... just in case I happened to be that person's first
such case.
I had been to 15 different Doctors and other health professionals over a
span of about 2 years, so with everything that was wrong (with me),
there really wasn't an issue regarding a positive disability
determination. The challenge was determining (based on medical evidence)
when I could no longer work. Had I gone to a Post Polio Clinic sooner,
than later, my disability date could have been at least 6 months earlier
than it turned out to be.
The whole process took about 2 months.
Good luck,
Mark
-----
From Scout <Scout@SKALLY.NET>
The SSDI Program Operations Manual System (POMS) for PPS can be
accessed and printed out via
http://www.skally.net/ppsc/ssdi-poms.html
be careful of some of the web site information, especially the stuff
that suggests you should lie to the SS Administration..
-----
Subject PBS Special on Polio
From Together@PPRG.org
AMERICAN EXPERIENCE presents
The Polio Crusade, a one-hour documentary
from filmmaker Sarah Colt (Geronimo, RFK) that interweaves the personal
accounts
of polio survivors with the story of an ardent crusader who tirelessly
fought on their behalf
while scientists raced to eradicate this dreaded disease. Based in part
on the Pulitzer
Prize-winning book Polio: An American Story by David Oshinsky, The
Polio Crusade
features interviews with historians, scientists, polio survivors, and
the only surviving
scientist from the core research team that developed the Salk
vaccine, Julius Youngner.
This PBS web site gives more
information and allows you to watch the
entire program on your computer:
<http://www.pbs.org/wgbh/americanexperience/polio/introduction>
-----
Subject Mechanical breathing assistance and the use of oxygen
From Richard Daggett <richarddaggett@CA.RR.COM>
In the past couple of weeks there have been posts relating to mechanical
breathing assistance and the use of
oxygen. We have posted a compilation
of articles on this subject on our website. You can access them at:
http://www.polioassociation.org/newsletters.html
I hope this is helpful. If you have
specific questions I will try to get
the answers for you.
Richard Daggett, President
Polio Survivors Association
12720 La Reina Avenue
Downey, CA 90242-4243
richarddaggett@ca.rr.com
or Richard@polioassociation.org
www.polioassociation.org
-----
Subject PPRG on Facebook
From PPRG <together@pprg.org>
I am trying an experiment by putting the PPRG on Facebook. It is my hope
that we will be able to reach people we haven't before. If you belong to
Facebook or know someone who does, please check out our page there. Your
comments and suggestions are welcome.
<http://www.facebook.com/pages/Post-Polio-Resource-Group/50064353278>
--
Michael Odle
PPRG Internet Coordinator
Together@PPRG.org
http://PPRG.org
-----
Subject Progression
From Loreen <loreenwl@PEOPLEPC.COM>
Therapy or exercise works for some people but it's not for everybody. I
think no one can make blanket statements about what works and what
doesn't. Polio late effects and treatment thereof are different for each
individual.
I had spinal-bulbar polio. My whole body was affected. The most serious
damage I had was to my back and abdominals. My physiatrist tells me that
his EMG showed polio damage in every muscle he tested. He was very
thorough. He tested muscles I didn't know I had. When I had a hip
replacement in my "good" leg the rehabilitation afterward was a serious
issue. I had to have the replacement because my hip joint was gone. It
was to the point I had a very hard time even transferring. The
orthopedist who did the replacement did not believe post polio exists.
He expected me to rise and walk or at the very least go direct to
outpatient therapy. Didn't happen. He was frantic after the surgery
because it was obvious I could not come anywhere close to his
expectations. I could not get out of bed, or sit up for that matter.
That leg does everything.
Fortunately, the physiatrist had arranged for me to go to his rehab
hospital after the surgery. They got me moving again. In order for
Medicare to pay for rehab, I had to do a certain number of hours per day
of therapy. The rehab hospital put me on rotating exercises - very small
number of repetitions - up to 5, different muscle groups throughout the
day. They interspersed those with sessions of gardening and other
non-physical therapy. I never had to do the same exercises twice in one
day, nor did I have to do the same exercises two days in a row. That
regimen got me up and moving pretty fast. Then I was discharged to
outpatient PT. They put me on a regulation therapy regime with energetic
exercise and increasing repetitions. I decompensated immediately. At
that point I seized control of my own rehab at my own pace. I based it
on the rehab place's regimen. That worked.
I was been in and out of PT for years before this surgery, also did lap
swimming on my own. The swimming made me feel better but it sapped my
strength. I ended up with a net energy loss and net strength loss. Every
time I'm put on a rigorous regular PT schedule, I _always_ get worse. I
take a lot of flack from therapists and others who think the answer is
in exercise. I don't think it's helpful to take that tack. It is
demoralizing to me and the discussion ends there because I know it
doesn't work. For me. I think had I been discharged directly to regular
PT after my surgery I may never have recovered. I think we each have to
figure out what works for us.
Loreen
-----
Subject YouTube
From Richard Daggett <richarddaggett@CA.RR.COM>
Hi -
I just posted two polio related
videos on YouTube. Actually, only one is
a compilation of videos. The other is a slide show that was made with
Photoshop for a digital photography
class I took last year. If you get on YouTube, type "polio pavane" in
the search box for the video and
"polio journey" for the slide show.
Let me know what you think.
Richard
-----
Subject Nerve Growth Treatments
From Tom <polio1946@gmail.com>
Alumnus Robert Morris '76 Featured in The Deal Newsweekly
Hamilton College News - Clinton,NY,USA
As soon as next year, he says, the foundation expects
to publish its results on nerve growth treatments in
mice in hopes of curing post-polio syndrome. ...
<http://www.hamilton.edu/news/more_news/display.cfm?ID=14902>
-----
Subject Moving message from son of polio veteran
From PPRG <together@pprg.org>
I received the following email from the son of one of our PPRG members,
who recently died. It was very moving to me, and there's a good message
in it for all of us. Gene has graciously given permission for me to
share this with all of you. He is not on our list, however, so if you
wish to reply to him, send it to me and let me know that you want me to
pass it on to him. Here is his letter:
Hello,
My name is Gene Herdeman. My father Henry(Hank), was a life member of
the PPRG, and a polio survivor. He passed away November 3^rd of this
year, after battling colon cancer for a very short four months. As long
as I can remember, our family has felt that we were “in tune” with the
affects of my Dad’s condition. Throughout the last thirty years of his
life he was constantly making adjustments to his lifestyle, always
compromising as little as possible along the way. Tenaciously holding on
to every activity he enjoyed for as long as possible.
The reason I feel compelled to write to you, is that very simply, my
Dad, our family, (and his doctor) misread the symptoms of the cancer as
the next progression of his Post-Polio symptoms. The fatigue, and
associated breathing difficulties were looked at as just another step in
the general weakness and premature fatigue he had lived with most of his
adult life. The tenderness and soreness that came on relatively
un-noticed were also something that he had felt many times before and
gone away. They might have been due to over-exertion in some muscle
group or just over activity. We had become so accustomed to his
post-polio being responsible for the physical changes he experienced,
that we ignored the larger set of possibilities that “the rest of the
world” would have considered or been pre-emptive about.
Nothing may have changed my Dad getting colon cancer. But, looking back,
I see that there is another danger and symptom of Post Polio that many
people may underestimate, or not be aware of. Please be sure that your
members are aware, or reminded, that their health care is complicated,
and they must always look at themselves as their best advocate and
care-giver. They need to look at the post polio as an ADDED burden or
responsibility, and continue to keep an open mind about what their
bodies may be telling them. Unfortunately, my Dad was always trying to
convince people that his PP symptoms were real, and the affects were in
fact due to him having Polio decades ago. The psychological affects and
mental fatigue of having to argue that point alone over the years cannot
be underestimated as a symptom or consequence of PP. There are so many
other diseases and health issues that can hide under the broad condition
of post polio. The danger lies in doctors and patients not looking at,
and testing for, all the possibilities, each and every time. In a way,
the colon cancer snuck in, and used my Dad’s PP symptoms to allow itself
to become developed. A non-PP person may have noticed that they were
suddenly fatigued, whereas, my Dad was fatigued for years. Once the
cancer had established itself, and it’s own symptoms overshadowed the
PP, we looked at it as a progression of PP complicated by my Dad’s age
of 76 years. By the time other symptoms were evident, the cancer was
advanced to the point where it was terminal. The bottom line is that
Polio survivors face a greater risk of not identifying other illnesses
as soon or as easily as non-PP individuals, and that can be very dangerous.
I hope that this explanation and opinion of my fathers battle with
cancer and how it may be related to his Post Polio might cause some
other Polio survivors to look closely at how they manage their overall
health, and otherwise scrutinize doctor’s and their own diagnoses of
their different health conditions.
Sincerely,
Gene Herdeman
--
Michael Odle
PPRG Internet Coordinator
Together@PPRG.org
http://PPRG.org
-----
Subject Shoes
From Judith <jramhorst@YAHOO.COM>
National Odd Shoe Exchanges matches
folks with mis-matched feet with others who have the opposite size.
There is a fee. When I have to buy
two pair, I donate the unused pair to them for a tax deduction.
Also, in the East, Nordstrom's will
sell you a mis-matched pair at the cost of one pair.
--
From Scout <Scout@SKALLY.NET>
another for mis-matched shoes:
Odd Shoe Finder - buy and sell mismatched pairs of shoes
http://oddshoefinder.com/
------
Subject Polio survivor shares her childhood
From Scout <Scout@SKALLY.NET>
Polio survivor shares her childhood
University of Toledo's Independent Collegian (subscription) -
Toledo,OH,USA
http://tinyurl.com/5umtqr
Excerpt:
~ Shreve, who was diagnosed with polio when she was 1 year old while
living in Toledo, will talk about her book, "Warm Springs: Traces of
a Childhood at FDR's Polio Haven" today at 1 p.m. in the Ward M.
Canaday Center for Special Collections in Carlson Library.
Shreve said Warm Springs offered a child like her plenty of freedoms,
but she was a bit of a brat.
"I was a troublemaker, and I was a little bored, so I used my free
time to cause a little trouble; that's what the book is about," she
said. "You know, it was chasing boys, trying to get some activities
going, doing things that were considered wrong - not bad trouble, but
you know … trouble is trouble," she said. ~
-----
Subject Physiatrists
From Helpenstell's <hstell@PEAK.ORG>
I researched the Northwest and found a wonderful physiatrist who
specializes in PPS. He was the first doctor to take my hypothesis of
PPS seriously and is now the very center of my support team. I learned
about physiatrists in a section of the book Post-Polio Syndrome, A guide
for Polio Survivors and Their Families. I've included excerpts below.
Bonnie
Oregon
Post-Polio Syndrome, A guide for Polio Survivors and Their Families.
page 30
"Physiatrists are physicians who specialize in Physical Medicine and
Rehabilitation (PM&R). The specially was created in the 1930's and
expanded quickly in the 1940's owing in large part to (1) wounded
military personnel and (2) the polio epidemics. ....
The need for physicians who understood rehabilitation principles and
were able to manage both acute and chronic injuries and illnesses was
intensified by the polio epidemics. ..... Because physiatrists were
particularly knowledgeable about prescribing exercise therapy for
patients, they became know as 'the physical therapy doctors.'" ......
concerned, not exclusively to be sure but in large measure, with the
chronic management of physically disabled patients.
All Physiatrists are trained to treat polio related issues; in fact
demonstrating competence in treating PPS is integral to passing the
medical specialty board examinations in PM&R. However, not all
physiatrists are interested in pursuing PPS as a clinical and research
interest, so their expertise does not extend beyond the initial
training. Bottom line is that regardless of specialty training, it is
highly desirable to find a doctor who has taken a special interest in
treating polio survivors. Many physiatrists are excellent polio doctors
because of both their early training and their clinical and research
interest in all aspects of polio and PPS."
-----
Subject Polio survivor's book just published, 10-1
From "Jann" <arojann@yahoo.com>
New Polio book: Seven Wheelchairs: A Life Beyond Polio by Gary
Presley. I have not read it yet, but have a friend who knows the
author, and has read the book, and recommends it highly.
Gary was interviewed on Iowa Public Radio. The whole interview is
about 45 minutes: http://tinyurl.com/3jgqeb
More info on Gary:
http://internetwritingworkshop.blogspot.com/search/label/Gary%20Presley
Also on the website is info and support for other aspiring
authors...Jann Hartman, now out on the west coast in WA State.
I have not yet updated my story, but for anyone interested here is
My Polio Story: http://www.geocities.com/arojann.geo/poliostory.html
-----
Subject (Fwd) WE'RE STILL HERE! Press release
From Scout <Scout@SKALLY.NET>
Contact:
Joan L. Headley
314-534-0475
http://www.post-polio.org
Ann Lee Hussey
603-767-6134
http://www.rotarypoliosurvivors.com
FOR IMMEDIATE RELEASE
Post-Polio Health International kicks off WE’RE STILL HERE!
for October 12-18, 2008
St. Louis, Missouri - In an effort to spread understanding of polio's
long-term effects, Post- Polio Health International (PHI) urges all
polio survivors and post-polio support organizations to tell their
personal polio stories at local Rotary club meetings.
Polio Survivors and Associates (PSA), a Rotary Action Group, made up
of individual polio survivors and Rotarians with a special interest
in polio, such as volunteer participants in current polio vaccination
programs, is asking clubs to tell the polio story in their own
community through the experiences of their own community survivors.
Both organizations believe this interchange of experiences and
information will increase public awareness of the current effort by
Rotary International to eradicate polio worldwide. The groups also
want to emphasize the need to create rehabilitation programs that
provide healthy and productive lives for individuals with physical
disabilities.
“Our goal is to offer Rotarians a better understanding of the long-
term after effects of having had polio as well as the initial
effect,” said Joan L. Headley, Executive Director of PHI. Headley
continues, “Rotary International’s commitment to eradicating the
poliovirus from the world is unyielding. PHI and the extensive post-
polio network carry on from there, assisting those for whom the
vaccine was too late.”
Ann Lee Hussey, Chairperson of PSA, said, “As Rotarians who are also
polio survivors, we know personally the significant difference
rehabilitation made in our lives and how it contributed to our
success in life. Our goal is to ensure that younger polio survivors
have the same opportunity.”
According to an analysis done by PHI, there are 920,000 survivors in
the US, with 500,000 experiencing new problems in maintaining their
quality of life. Most debilitating is new weakness that may require
new assistive devices, such as new bracing, custom-made shoes,
wheelchairs and scooters. Some are in need of home health care and
new breathing machines, such as bi-level devices and ventilators.
Additionally, aging polio survivors are in need of health
professionals who understand how to manage their health issues.
Because of the success of the eradication effort, the total number of
survivors worldwide has dropped considerably. The exact number is
unknown, but polio survivors worldwide are in need of programs that
provide rehabilitation, which is key to getting an education and to
participating in society.
Experts are concerned about the recent cases of polio in Nigeria,
India, and Pakistan, and the effects of conflict on the vaccine
campaigns. Hussey states, “Polio is a distant memory for many, but we
need to remind everyone that it has never been eradicated in some
parts of the world and that contributions of manpower and funds can
help finish that job and turn our focus to rehabilitation.”
Post-Polio Health International’s website, http:// www.post-polio.org/
is home-base for facts, ideas and the latest updates on
the WE’RE STILL HERE! campaign, with a link to Polio Survivors and
Associates at http://www.rotarypoliosurvivors.com/
Post-Polio Health International is a nonprofit organization based in
St. Louis that serves as international resource for health
professionals and both polio survivors and users of
home mechanical ventilation. PHI and PSA can facilitate media
interviews.
Post-Polio Health International
Including International Ventilator Users Network
4207 Lindell Blvd, #110
St. Louis, MO 63108
314-534-0475
314-534-5070 fax
http://www.post-polio.org/
-----
Subject Re: Anesthesia info. for Physicians
From Helpenstell's <hstell@PEAK.ORG>
The following articles are available from the Post Polio Health website
and were helpful for me during my recent colonoscopy and surgery last
year. I am gathering from my recent experiences that most
anesthesiologists and doctors know about PPS, but not extensively and
appreciate the additional information.
Summary of Anesthesia Issues for the Post-Polio Patient
http://www.post-polio.org/edu/hpros/sum-anes.html
The following publication titled Post Polio Syndrome - Management and
Treatment in Primary Care might also be helpful for any of our
health professionals.
http://www.post-polio.org/edu/hpros/pubs-med.html
Just as a heads up - I have also found that my biggest surgery related
problem is the automatic use of opiate derivative drugs following
surgery. I've had problems with such meds (reduced capacity to move
easily and breath freely) for years and with my recent diagnosis of PPS
I now understand why and wear a medical bracelet. I also used
ibuprophen following the removal of my ovaries and was able to
discontinue them 24 hours later. The big pain meds guns aren't always
necessary following surgery - especially for those of us who are
accustomed to managing pain over the years.
Bonnie
Oregon
-----
Subject Neck and its many vulnerabilities
From eddie <ebollenbach6400@CHARTER.NET>
One cause of neck soreness is, as another poster explained, a tight
trapezius muscle. The muscle goes from the neck over the shoulder and
covers the shoulder blade as previously explained. Your neck soreness
may come from this muscle particularly if you have Kyphosis, that is
your upper body curves forward so that your head is not directly over
your shoes on top of a straight body. In this situation, with neck pain,
the remedy is stretching out the Kyphotic upper body. I mentioned laying
on your back on the floor, putting a towel under the shoulder blade with
shoulders remaining stretched to the floor and so on. If the cause of
neck soreness is kyphosis stretching your neck this way and that will
not be effective.
I would also caution people about the recommendation to stretch the neck
in a way where you move your head sideways as if you are trying to touch
your ear to your shoulder. If you do this the neck disks between the
vertebrae tend to bulge out on the opposite side of the stretch and if
there is a bulging disk already on the side of the stretch it can be
pinched. This can cause big problems. You can touch your chin to your
upper chest and rotate your chin left or right, leaving it down. I
would be careful about the bending directly sideways stuff.
Eddie
-----
Subject Re: Neck and its many vulnerabilities
From Richard Daggett <richarddaggett@CA.RR.COM>
I've been reading the posts relating
to the neck and fatigue. Eddie and a couple of others mentioned the
Trapezius muscle. Another muscle that can become overworked is the
Sternocleidomastoid. This muscle attaches to the base of the skull,
right behind the ear, and travels to the breast bone (sternum). Some
people, without really being aware of it, use this muscle to augment
deep breathing. There might be some on this list with reduced pulmonary
function who compensate for weakened breathing muscles (diaphragm and
intercostals) by using their neck muscles. This is actually quite
common. Over time these muscles become
strained, causing pain, headaches, and fatigue.
Those of you who experience "brain fog" or related fatigue issues should
have your pulmonary function tested.
Richard
-----
Subject Englewood Hospital & Medical Center
From Jean <hnjutzi122@EJOURNEY.COM>
http://ehmc.mediaspa.com/medservices.cfm?pageid=437&bc=0,8,158,198,425
Read about SSDI and SSI for post polio
Jean
-----
Subject polio story
From Jean <hnjutzi122@EJOURNEY.COM>
I just finished reading "We Are All Welcome Here" by Elizabeth Berg.
This is a story about a a post polio lady who used breathing machines to
stay alive while living in her home back when not many were allowed to
do this. A quick read, but very humbling.
Jean
-----
Subject Polio Biology of Fatigue, is there New Hope?
From Scout <Scout@SKALLY.NET>
Polio Biology 12
Polio Biology of Fatigue, is there New Hope?
By Edward P. "Eddie" Bollenbach, M.Sc
http://www.skally.net/ppsc/BiologyOfFatigue.html
excerpt:
"The first thing I thought of was... all of us with PPS. A 10% to 20%
improvement in muscle endurance could take us from exhaustion to
comfort. And maybe, just maybe, new drugs of a similar type could do
even better in the near future."
-----
Subject (Fwd) Re: Disability Insurance
From Scout <Scout@SKALLY.NET>
------- Forwarded message follows -------
From: "dkf001"
I had to face the prospect of going on disability in my mid-50's. I
was fighting it tooth and nail, but my physicians were becoming
pretty adamant most particularly because of the falling in spite of
using braces and a cane.
I also had the double diagnoses of post-polio and fibromyalgia.
My rheumatologist scheduled me for a Functional Ability Evaluation.
The test takes two days and about 3 hours. It was administered by a
specially certified physical therapist at a work fitness center.
Unfortunatly the cost is not covered by insurance and it was several
hundred dollars (don't remember the exact amount). It had two
outcomes for me.
First, it put into a quantified and qualified format my precise
condition. Not so good, as it turned out. Thus, my applications for
long-term disabililty and then for social security disability went
through without a glitch. But, secondly, it really put me into a bit
of a tailspin because I had kept trying to "psyche" myself into
believing that I would get better if I could just manage myself
better.
It has taken a continuing process of re-inventing myself to maintain
a positive quality of life because I have pretty much defined myself
by what I could do in spite of my body, rather than planning my
activities after adjusting to my body. I am now starting into a
power chair - and quess what?
My world has again expanded. I am able to go places and see things
that I had given up.
Hang in there! Things change, but they also continue to get better.
Good luck!
Dianne
------- End of forwarded message -------
-----
Subject Post-Polio Clinics, Centers and Health Professionals
From Scout <Scout@SKALLY.NET>
One of the best locators on the web can be found on
https://www.post-polio.org/net/pdirhm.asp
Post-Polio Health International's Post Polio Directory ..
unfortunately it's in pdf file format, you'll need the adobe or foxit
free reader to access the different sections.. a link is provided on
page.
then check The Physiatrist's Professional Association's locator:
http://www.e-aapmr.org/imis/imisonline/findphys/find.cfm
Physiatrists are physicians with special training in Physical and
Rehabilitative Medicine and often are the most up to date in the late
affects of Polio.. diagnosis and treatment.
Of note.. MOST Centers and Clinics will work and play well with your
primary physicians so you don't really have to live very close to
take advantage of their expertise.
-----
Subject Adult stem cells rejuvenate muscles
From Valleystorm <valleystorm@yahoo.com>
http://news.bbc.co.uk/2/hi/health/7463466.stm
This is an encouraging article. However, it's easy for us to forget that
polio is a nerve disease, not a muscle disease. Even so, I'm thinking
it might put less stress on the fragile nerves if the muscle tissue
could quickly repair itself. A danger might be PPSers thinking that
healthier muscle tissue means greater strength. It won't...... because
the nerves that serve muscle tissue are still weak and fragile and must
not be stressed beyond ability to survive.
-----
Subject PHI Conference
From "GG Genereau" <genereau@vbe.com>
From Joan L. Headley, Executive Director PHI
We now have dates for the Post-Polio Health International (PHI)
Conference to be held in Warm Springs, Georgia. It will be April 23-25,
2009.
Join us at Roosevelt Warm Springs http://www.rooseveltrehab.org/ , Warm
Springs, Georgia.
The extensive program will provide polio survivors tools to live well
with the late effects of polio; offer a forum for the exchange of ideas
among survivors, families and health care professionals; and explore the
history and legacy of the polio epidemics and its survivors. (The
conference is scheduled to begin at 1:00 pm on Thursday, April 23, 2009.
The final educational session will end at 4:00 pm on Saturday, April 25,
2009, but there will be a social event on Saturday evening. Hotel
accommodations will vary in cost and luxury. We will notify you as
soon as the details are finalized.
Interested in a pre-conference retreat that will go one-step beyond
re-rehabilitation and focus on health and wellness? A Post-Polio
Wellness Retreat is being planned for Sunday, April 18, 2009 - Thursday,
April 23, 2009. It will be modeled after the popular retreats held at
Bay Cliff Health Camp in Big Bay, Michigan. Want to know more? Watch the
10-minute DVD “Holistic Health and Wellness Retreat for Polio
Survivors.” http://www.baycliff.org/site/
Joan L. Headley, Executive Director
-----
Subject Shingles
From Post-Polio Health International <director@POST-POLIO.ORG>
Post-Polio Health International has been asked about the shingles virus
and has circulated the following:
Polio Survivors Ask…
Nancy Baldwin Carter, Omaha, Nebraska
Q: I keep hearing about the shingles vaccination. Should polio survivors
get one?
A: Currently there is no experimental data regarding polio survivors
getting this vaccine. PHI polled nineteen doctors (experienced in
treating polio survivors) about your question and received a variety of
responses. The most prudent thing to do seems to be to study the
information we provide below, talk with our doctors about our individual
circumstances, and then each make our own decision.
THE VACCINE: In the year 2006 a vaccine called Zostavax was licensed to
prevent shingles in people over age 60. In the clinical trial, the
vaccine was successful in 51% of the participants 60 and older and was
most effective in those aged 60 to 69. Shingles-related pain may also be
reduced in many of those receiving the vaccine.
PRECAUTIONS: The Centers for Disease Control says those who should not
get this vaccine are people who have had a life-threatening allergic
reaction to gelatin, the antibiotic neomycin, or any other component of
shingles vaccine. They advise those who have severe allergies to inform
their doctor about this.
They also recommend certain people do not get shingles vaccine (which
contains live though weakened chickenpox virus): Individuals who have a
weakened immune system because of HIV/AIDS or another disease that
affects the immune system, treatment with drugs that affect the immune
system, such as steroids, cancer treatment such as radiation or
chemotherapy, a history of cancer affecting the bone marrow or lymphatic
system, such as leukemia or lymphoma. Those with active untreated
tuberculosis and those who are pregnant or might be pregnant should not
get the vaccine.
Individuals who are moderately or severely ill (including those with a
temperature of 101.3º or higher) should wait to get their vaccine until
they are well.
THE DISEASE: Approximately one million cases of shingles (also known as
Herpes Zoster) occur in the United States each year. The same virus that
causes chickenpox causes shingles. When people recover from chickenpox,
the virus lies lurking in the nervous system for the rest of their
lives. Certain circumstances (perhaps stress or immune deficiency or
something else) reactivate this virus and cause shingles. This usually
occurs after age 50.
Shingles may begin as a sensitive or burning feeling in the skin that
turns to a rash, usually down a certain nerve on one area and one side
of the body. Shingles blisters then form for a number of days before
they pop and finally crust over and heal. The entire process can take
several weeks.
SYMPTOMS AND COMPLICATIONS: Fever, chills, upset stomach, and headache
can indicate shingles. Very rarely, shingles can result in pneumonia,
hearing difficulties, blindness, encephalitis, or death.
A common complication of shingles is nerve pain. When this pain
continues for more than a month, it’s known as postherpetic neuralgia,
which occurs in more than 40% of those over 60 who have had shingles.
This can be devastating. In some cases, certain medications may be used
to alleviate the situation.
INTERESTING FACTS: People who've had shingles can get it again. Only
people who had chickenpox or chickenpox vaccine can get shingles; the
chickenpox virus stays in the body forever. Shingles is not contagious.
However, a person who never had chicken pox or the chickenpox vaccine
can get chickenpox from someone with shingles.
COST: A number of factors determine what the shingles vaccine costs
individuals. For example, in Omaha, Nebraska, the vaccine is
administered in pharmacies for the cash price of $220. Plan D picks up
from $25 to the full amount, depending on the coverage one has chosen.
Medicare itself won't pay for the vaccine, though it will pay a $20
administration fee. Getting a firm price may take a few phone calls in
each separate locality.
Source: Post-Polio Health International, www.post-polio.org
-----
Subject Dianne Odell
From Richard Daggett <richarddaggett@CA.RR.COM>
Reading the story about Dianne Odell
gives rise to many feelings:
sadness at a person's death; joy at a life lived well, despite
exceptional
hardship; and compassion for her family and friends who
tried so hard to keep her alive.
http://news.yahoo.com/s/ap/20080528/ap_on_re_us/iron_lung_death;_ylt=AkThD0qAYeMRkJs1POLy67IXIr0F
It also evokes many "what ifs". What
if her generator had started? What if
there were enough people around, with strength and knowledge, to hand
pump her iron lung. What if? What if?
But 'what ifs' won't bring Dianne back. And 'what ifs' won't comfort her
friends and family.
I used an iron lung for six months following polio's onset. I now have a
tracheostomy and use a small, portable respirator (PLV100). I use my
respirator 24/7. I also have a
generator that starts automatically if the electricity
fails. It is powered by natural gas, which is cleaner
and more reliable than gasoline.
In addition I have an ambu bag in my home and in my vehicle. I've never
needed one, but it is good insurance.
Life is good, but life can also be fragile. An Olympic athlete can be
competing one minute and become a
quadriplegic the next instant.
Dianne's death reminds us that we should live each day to the fullest.
Richard Daggett, President
Polio Survivors Association
richarddaggett@ca.rr.com <mailto:richarddaggett%40ca.rr.com>
or Richard@polioassociation.org <mailto:Richard%40polioassociation.org>
www.polioassociation.org
-----
Subject Hypoventilation does not explain the impaired quality of
sleep...
From Scout <Scout@SKALLY.NET>
Scand J Caring Sci. 2008 Jun;22(2):236-40.
Hypoventilation does not explain the impaired quality of sleep in
postpolio patients ventilated noninvasively vs. invasively.
Klang B, Markström A, Sundell K, Barle H, Gillis-Haegerstrand C.
The Red Cross University College of Nursing, Department of
Neurobiology, Care Sciences and Society, Karolinska Institutet,
Stockholm, Sweden.
In a previous study, it was found that patients treated with
noninvasive ventilation (NIV) reported larger dysfunctions in sleep-
related parameters as assessed with the Sickness Impact Profile (SIP)
and Health Index questionnaires than those treated with tracheostomy.
The aim of the current study was to further evaluate these sleep
limitations and relate these limitations to blood gas analyses in the
groups to investigate, if the differences could be related to
differences in the efficacy of ventilation.
We compared postpolio patients treated with tracheostomy (PPT, n =
17), NIV (PPN, n = 14) and patients with neuromuscular disorders
treated with NIV (NMN, n = 15).
Significantly fewer patients in the PPT group scored large
dysfunctions in the SIP sleep (SIP score >10 points) compared with
the PPN and NMN patients. The PPT patients scored significantly
higher regarding quality of sleep and less sense of tiredness than
the PPN and NMN patients.
No differences were found between the groups regarding blood gas
parameters neither before nor during or after the study period.
In conclusion, postpolio patients treated with invasive home
mechanical ventilation seem to experience better sleep and less sense
of tiredness than patients on NIV. These differences cannot be
explained by differences in alveolar ventilation as assessed with
blood gas analyses.
PMID: 18489694 [PubMed - in process]
-----
Subject Use of intravenous immunoglobulin and plasma exchange in
neurological disease
From Scout <Scout@SKALLY.NET>
NOTE: Full text can be accessed for ?? via
http://tinyurl.com/5eqgjo
(have to register first)
Curr Opin Neurol. 2008 Jun;21(3):358-65.
Use of intravenous immunoglobulin and plasma exchange in neurological
disease.
Linker RA, Gold R.
Department of Neurology, St Josef Hospital, Ruhr-University, Bochum,
Germany.
PURPOSE OF REVIEW: The most relevant indications for the use of
intravenous immunoglobulins and plasma exchange in neurological
disorders are described, with special emphasis on the data from
clinical trials and aspects of specific importance for clinical
routine.
RECENT FINDINGS: Much therapeutic success in neuromuscular and
neuroimmunological diseases came with the therapeutic introduction of
intravenous immunoglobulin and plasma exchange. Today, intravenous
immunoglobulins and plasma exchange are preferentially used to treat
acute Guillain-Barré syndrome, myasthenic crisis, acute or chronic
inflammatory demyelinating polyneuropathy, or stiff person syndrome.
Intravenous immunoglobulins also proved valuable for refractory
dermatomyositis or multifocal motor neuropathy.
Owing to their generally mild side effects, intravenous
immunoglobulins have now been tested in many more indications,
sometimes with surprising clinical effects as in the case of
postpolio syndrome.
While intravenous immunoglobulin is not the treatment of first choice
in many immune-mediated disorders of the central nervous system,
plasma exchange has become an integral part of escalating relapse
therapy in relapsing-remitting multiple sclerosis.
SUMMARY: In recent years, our knowledge on neurological disease
mechanisms has broadened and more specific treatment alternatives
have become available.
Yet, established therapeutic options such as intravenous
immunoglobulins and plasma exchange are still high on the list for
many neuroimmunological disorders.
Controlled trials have led to a refinement of the application of both
treatment modalities, whose targets can be sometimes congruent, but
in other cases also very distinct.
PMID: 18451723 [PubMed - in process]
-----
Subject Accessible Home
From Connie <csisson3@STNY.RR.COM>
fyi
http://www.disaboom.com/Living/Lifestyle/accessiblehome/Articles.aspx?
-----
Subject (Fwd) Biological Link Between Pain And Fatigue Discovered
From Scout <Scout@SKALLY.NET>
Forwarded message follows
Subject: Biological Link Between Pain And Fatigue Discovered
I figured this would be a pleasant thing for you to post in that
fatigue doesn't originate in the brain at all. The muscle fatigue
comes with pain in over 90% of the time in all neuromuscular and
fatigue syndromes.
http://www.sciencedaily.com/releases/2008/04/080407153037.htm
if that wraps to two lines use this one
http://tinyurl.com/5euzxt
-----
Subject Competitive Bidding
From "Marilyn" <marilynkcgw@yahoo.com>
Another change that will affect purchase of durable medical equipment
is called Competitive Bidding. Please read the article and find out
why we need to follow up and Get Involved.
Competitive Bidding, A Federal Leap of Faith
http://www.wheelchairjunkie.com/competitivebidding08.html
Get Involved
http://www.pridemobility.com/competitivebidding/
-----
Subject Importance of Post Polio Communication
From Ppsofsouthfl@aol.com
It is important for all to keep telling their medical professionals about
Post Polio Syndrome.
If they hear it enough from multiple patients, they will take notice.
That's why it's also so important that we share information and keep
up-dated on what is happening to those with PPS.
The more medically-educated we sound when we talk to anyone in the medical
community, the more they will take notice.
It's also important to have contact information for others in our PPS
community that have convinced other doctors who can talk to our doctors.
"Never doubt that a small band of commited people can change the world,
indeed, it is the only thing that ever did..." Margeret Meade
Barbara, IPPSO
-----
Subject NIPP IT Campaign
As polio reurns to the US, polio
vaccinination decreases among toddlers. The "NIPP IT" CAMPAIGN is
announced to prevent America's next Polio epidemic.
http://www.englewoodhospital.com/medservices.cfm?pageid=622&bc=0,27,145
----
Subject NIPP IT and Minnesota Polio out break Info
From "Marilyn" <marilynkcgw@yahoo.com>
Report of Polio in Minnesota, October 2005
http://www.post-polio.org/edu/pol-mn.html
Very good read with questions and answers on the subject.
-----
Subject Book by Walt Balenovich
From James <jdebondi@yahoo.com>
Hi
Came across http://www.bluechairbook.com about a polio man
who has traveled extensively by wheelchair. His
website gives more information.
James
-----
Subject Polio Books at Alibris
From Linda Wheeler Donahue <LinOnnLine@AOL.COM>
Hope everyone in polioville is fine on this winter day.
I just spent some time at Alibris books and found 93 books dealing with
polio! It's fascinating to look at all the titles and book descriptions.
Check it out:
http://www.alibris.com/booksearch?subject=polio
Linda sending Kind Wishes
~~~
Linda Wheeler Donahue
The Polio Outreach of Connecticut
Southbury, Connecticut USA
~~~
-----
Subject Actual and perceived
activity levels in polio survivors and older controls:
From Scout <Scout@SKALLY.NET>
[Full text of this paper can be accessed for US$30 via:
http://tinyurl.com/247293 ]
[Longitudinal study = a correlational research study that involves
repeated observations of the same items over long periods of time,
often many decades. ]
Arch Phys Med Rehabil. 2008 Feb;89(2):297-303.
Actual and perceived activity levels in polio survivors and older
controls: a longitudinal study.
Klein MG, Braitman LE, Costello R, Keenan MA, Esquenazi A.
Moss Rehabilitation Research Institute, Philadelphia, PA; Thomas
Jefferson University, Philadelphia 19141, USA. mklein@einstein.edu
OBJECTIVE: To examine factors associated with daily step activity,
perceived activity, maximum walking speed, and walking speed reserve
over time in polio survivors and older adults with no history of
polio.
DESIGN: Longitudinal study.
SETTING: A research clinic and the community.
PARTICIPANTS: Polio survivors (n=96; 65 in postpolio syndrome [PPS]
group, 31 in non-PPS group) and older adults (n=112) with no history
of polio.
INTERVENTIONS: Not applicable.
MAIN OUTCOME MEASURES: Daily step activity, perceived activity,
maximum walking speed, and walking speed reserve.
RESULTS: Results showed decreases in perceived activity over time in
the PPS group. However, there was no change in average daily walking
activity.
Overall, polio survivors walk less and have a smaller walking speed
reserve than controls. Knee strength was positively associated with
maximum walking speed and walking speed reserve in all groups.
Weight and age were associated with daily step activity in controls
but not polio survivors.
CONCLUSIONS: Daily walking activity did not change statistically over
the 3-year study period, although perceived activity and the walking
speed reserve decreased among polio survivors with PPS.
On average, polio survivors appear to function with minimal
functional reserve, as their preferred walking speed was close to
their maximum speed.
Publication Types:
* Research Support, U.S. Gov't, Non-P.H.S.
PMID: 18226654 [PubMed - in process]
-----
Subject Biomechanical effect of
electromechanical knee-ankle-foot-orthosis...
From Scout <Scout@SKALLY.NET>
Med Biol Eng Comput. 2008 Feb 8 [Epub ahead of print]
Related Articles, Links
Click here to read
[Full text of this paper can be accessed, for USD $32 via
http://www.springerlink.com/content/16h11501167h01u5/
Biomechanical effect of electromechanical knee-ankle-foot-orthosis on
knee joint control in patients with poliomyelitis.
Hwang S, Kang S, Cho K, Kim Y.
Department of Biomedical Engineering, Institute of Medical
Engineering, Research Institute for Medical Instruments and
Rehabilitation Engineering, Yonsei University, Wonju, Gangwon, 220-
710, South Korea.
In this study, an ideal electromechanical KAFO, satisfying stability
in the stance and knee flexion in the swing phase during walking, was
developed. Biomechanical evaluations were performed on four polio
patients by means of three-dimensional gait analyses and energy
consumption studies.
>From the three-dimensional gait analysis on poliomyelitis patients, a
considerable amount of knee flexion during the swing phase was
observed in controlled-knee gait, which resulted in approximately 33%
less energy consumption than in locked-knee gait.
The developed electromechanical KAFO in this study was helpful in
poliomyelitis patients having partial or complete paralysis of the
lower extremity, providing both stability in the stance and free
swinging of the knee. This unit was efficient in the transfer of
energy.
PMID: 18259793 [PubMed - as supplied by publisher]
-----
Subject Re:
Social Security - disability-related programs
From nielsenwilliams <nielsenwilliams@YAHOO.COM>
Hello - There are two quite distinct federal disability-related
programs in the U.S. People often confuse them.
To qualify for SSI, a person must be both so disabled they can't work
and also have very low family income and assets. SSI provides
relatively low benefits, but in most states a person who qualifies for
SSI will also qualify for Medicaid (the medical program for people with
very low incomes).
The other program is Social Security Disability Insurance (SSDI).
SSDI is an insurance program that's similar to Social Security
Retirement Insurance. To qualify for SSDI, a person have a disability
serious enough so they can't work now - but they must also have a
history of working in jobs covered by Social Security. The person must
have worked long enough to qualify - and their work must be fairly
recent, working 5 out of the past 10 years. SSDI benefits are linked to
work history. The longer you've worked and the higher your wages, the
higher your benefits from SSDI. Also, SSDI has no limit on other income
or on assets.
Two years after getting SSDI, a disabled person also qualifies for
Medicare -- an outrageously long wait for many people unless they have
other medical insurance.
Check the Social Security Administration web site for descriptions of
both of these programs. If I remember correctly, the URL is:
http://www.socialsecurity.gov.
Margaret in Michigan
-----
Subject: "Rolling": An Interesting Documentary
From: "GG Genereau" <genereau@vbe.com>
This isn't directly PPS but might be very interesting.
I have often thought of putting a
camera on my chair and recording a
day's events. I am curious to see the reactions of people I "run into".
Gail
"Rolling": A Documentary:
Physician and filmmaker Gretchen Berland gave video cameras to three
Los Angeles residents who use wheelchairs and asked them to document
their everyday lives. The result is Rolling, a frank and witty
documentary that sheds light on the daily challenges of living with
limited mobility. Galen Buckwalter, a clinical psychologist who became
paralyzed when he was 17, is one of the participants in the film. He
mounted a camera to his wheelchair and chronicled his life - from
doctor's visits to family camping trips. The documentary was featured
on National Public Radio's "Talk of the Nation" and more information
and short clips from the documentary can be found at their
web site, http://www.npr.org/templates/story/story.php?storyId=17993638
-----
Subject Re: Handbook on the Rights of Persons with Disabilities
From Ernest ernest.hinds@COMCAST.NET>
This link worked.
http://www.unhchr.ch/huridocda/huridoca.nsf/(Symbol)/E.CN.4.RES.2000.51.En?Opendocument
Ernest
--
From: Cleo <scout@SKALLY.NET>
Thanks Ernest.. for many of us the url was put on two lines.. combine
them into a one line address or.. use this link
http://tinyurl.com/yo2kkw
The original url is broken because the site changed the file name and
location .. which is a shame. We'll see how long they can leave this
one alone.
-----
Subject: Scientists Identify Gene Responsible for Statin-Induced Muscle Pain
From: "Marilyn" <marilynkcgw@yahoo.com>
http://www.newswise.com/articles/view/535643/?sc=dwhp
-----
Subject: re: exercise and other things
From: Valleystorm <valleystorm@yahoo.com>
http://www.ott.zynet.co.uk/polio/lincolnshire/library/cc_2_3.html#bollenbach_biology4
The link above is to many articles that will go far to answering many
of the questions that have come up in our group lately. Eddie is a
scientist who had polio and is experiencing post-polio and is putting
his knowledge and skills to work understanding the beast. And in
language accessible to those of us who aren't scientists! LOL Just give
all the articles a good read, much to think about in them.
Peggy
-----
Subject: Mobility Matters for Polio Victims
From: Michael Odle <Mr.Odle@sbcglobal.net>
Mercy Ships helping those with polio in Africa:
http://www.assistNews.net/stories/2007/s07100201.htm
--
Here is a link to a slide show about Mercy Ships' help for people with
polio in Sierra Leone:
http://www.mercyships.org/site/c.ehKHI0PJIqE/b.3512745/k.A446/World_Polio_Day.htm
--
Michael Odle
Personal web site
http://freepages.genealogy.rootsweb.com/~quixote/LaMancha.htm
Post-Polio Resource Group web site
http://pprg.org
We're all in this together.
-----
Subject: Re: Identifying unaffected muscles/neurons
From: eddie <ebollenbach6400@CHARTER.NET>
I think your advice to cautiously begin any exercise program is wise.
Just walking to my car to the office is becoming a struggle.
The point I want to make is that you are giving advice of caution for
exercise while exercising the wrong muscles too vigorously now.
Obviously you are getting fatigued by walking because the anti-gravity
muscles are being overused for their present strength and endurance. Get
off the legs and exercise without them and watch your fatigue level fall
and your endurance level improve. The easiest way is a wheelchair and a
pool. I always wince when people say they are reticent about exercise
while they are overexercising walking muscles. If you do this you will
experience local fatigue, pain, and Central Fatigue. The most difficult
for me to understand is when people are walking, fatigued by doing so,
and recommend strongly against all exercise for any polio survivor. We
all have different spatterings of damage. The virus didn't care where it
landed and did it's dirty work. Your job is to find out what is damaged
and act to improve endurance, lessen pain, and improve fitness. Most
doctors won't do this for us; some will help and advise. If possible we
have to do it. It's trial and error. If you make an error back off, use
other muscles, and utilize ingenuity. Making muscles sore or fatigued a
couple of times trying to find a way toward better health is nothing
compared to "struggling" by walking every day.
My two cents,
Eddie
-----
Subject: Provigil for treatment of post-polio fatigue........
From: Marsha in Texas <marsha1945@AUSTIN.RR.COM>
PPS Forum
After a wait of more than a dozen years, the U.S. government=20
study of modafinil (Provigil) for treatment of post-polio fatigue
has been published. But wait! There's more.
PPS Forum
By Richard Louis Bruno
December 2007
see http://www.newmobility.com/articleView.cfm?id=11041
After a wait of more than a dozen years, the U.S. government study of
modafinil (Provigil) for treatment of post-polio fatigue has been
published. But wait! There's more. The University of Alberta beat the
Americans and published their own study of modafinil and post-polio
fatigue. Does Provigil reduce post-polio fatigue, you eagerly ask? Well,
that depends on whether you read the actual study or listen to the
author's interview about the study. Let's start in Canada, where cooler
heads prevail. [con't]
-----
Subject: A whole bunch of stuff
From: eddie <ebollenbach6400@CHARTER.NET>
As is mentioned in the extract and table of contents for Dr. Halstead's
book, he doesn't know what PPS really is. I have often had the same
thoughts when reading the biomedical literature. For example, Cashman in
Montreal damaged the nerve mass to a muscle in a rodent and then
overused the muscle and the muscle got weaker. So, from his work he
concluded that the cause of PPS is overuse. But then we have Sharief, in
London, along with researchers at the Pasteur Institute in Paris and
Dalakis at the National Institutes of Health here all wondering why they
find the genetic material of polio virus, apparently being duplicated,
but mutated, inside the spinal fluid of patients with the symptoms of
PPS but not in patients who have had polio but do not show PPS. And
that's another thing: Why do some patients who have had polio with
varying apparent degrees of damage not develop PPS? Why do some
experience flu like symptoms and others not? Why do many develop the
illness after and injury or surgery while others develop PPS gradually?
Dr. Marcia Falconer and I found a statistically significant relationship
between those who developed PPS after trauma and then having flu like
symptoms during episodes of PPS fatigue. We also co wrote a paper
published in the American Journal of Physical Medicine describing the
occurence of PPS in patients who had polio but were never paralyzed. In
the same issue Dr. Halstead and Dr. Bruno wrote similar articles. You
don't even have to have been paralyzed?
And while we are at it why did Dr. Borg at the Karolinska Institute in
Sweden and his graduate students find inflammation producing chemicals
called Cytokines (which just mean "cell changers" in the spinal fluid of
those with PPS but not in those who had polio but no PPS? I have,
somewhere, the doctoral thesis of the individual who suggested using
intravenous immunoglobulin to treat PPS because it eliminates the
cytokines. Results of this have been mixed and disappointing. I
understand clearly Dr. Halstead's comment that he doesn't know whether
PPS is one disease or a couple of diseases. Actually, when I read that
I secretly wondered if his thinking was influenced to any extent by our
paper at Lincolnshire. Probably not, but if you understand the
biochemistry of PPS there are many things that remain unexplained and
the "overuse theory" that we all accepted and some still accept is
probably not the complete story because it doesn't explain too many
things about many of the aspects of PPS.
Now, I don't know too much about the topic of evaluating nerve damage. I
do know that EMG, where needles are stuck into muscles and then you
contract a muscle, results voltage changes that can be read on an
oscilloscope thingy and that this can tell the tester how much damage
you had when you first had polio. I do not believe this test can tell
how much you don't have due to PPS, nor would it be fruitful to have
people overuse and then demonstrate that overuse is the cause of PPS.
And that's another thing: Some people don't show much damage at all on
EMG and have PPS that severely limits their lives while others have
limbs that show a damage quotient of 4 out of 5, where 5 means the limb
is dangling and useless, but these same polio survivors don't seem to
have the fatigue and new weakness characteristic of PPS. PPS is a
cluster of symptoms. We don't know why they develop in some and not
others and we don't know if some with it have muscle changes which
results in PPS while others lose innervation to the muscles. Several
neat micrographs are available in Dr. Halstead's first March of Dimes
sponsored work that show individual muscle fibers in a cluster withering
while the cluster remains intact. This seems to indicate that end fibers
are being lost but if they are it may be that the entire neuron is sick.
I've read some of the letters in response to my earlier posts and thank
Cleo for her interpretations to those who became reactive. I feel badly
that a person is fatigued and burned out physically and mentally because
of unavoidable activities: laundry, cooking, cleaning, shopping and so
on, and cannot conceive of acting in a way to make things better. Or,
cannot see how things can ever be better. That is sad and I am sure it
is true for some..
Here are some of the things I did which you may or may not be able to do
to stop overusing polio affected muscles to the point of fatigue:
1. Had a roll in shower built
2. Put the washer and dryer upstairs in the bathroom instead of
downstairs in the basement
3. Switched to a wheelchair for mobility
4. Had my house ramped and doors widened.
5. Together with my wife found jobs that I could do to contribute to the
household using my strengths while she does the ones that use her strengths
6. Went to the Bureau of Rehab in my state and bought, with their help,
a ramp van with hand controls (the ramp motor just broke as a Christmas
present to me) A corollary of Murphy's law is: If an expensive
piece of equipment is going to fail the highest probability of failure
is when you need money for a lot of other stuff..
7. I went to physical therapy, take my stretching and posture
seriously, and am participating in a 4 man 800 meter relay at a swim
meet on Saturday which would not have remotely been possible 10
years ago..
8. I have never had my spinal fluid checked but I would bet dollars to
donuts that areas of my spine are inflamed.
9. Improvements I have made did not happen overnight. I tread water for
over a year back a decade ago and have had PPS for 25 years. As a matter
of fact Bob Mauro and I started the first internet Polio list before
Windows had become readily available with it's graphical and easily used
software interfaces. So, I am not a flash in the pan, as it were. Back
then I had to use DOS and a VAX computer from the College where I taught
Microbiology and Chemistry.
Nighty Night
Eddie
-----
Subject: Shoe website for people with disabilities
From: GG Genereau <genereau@vbe.com>
I was notified of this new, free, website. Maybe it would be of interest
to several on the list.
GG
http://www.oddshoefinder.com
-----
Subject: "Stem cell breakthrough....."
From: Valleystorm <valleystorm@yahoo.com>
http://news.yahoo.com/s/ap/20071120/ap_on_sc/stem_cells
These stem cells from human skin cells can be programmed to be brain
cells, nerve cells in the muscles, cells in the spinal cord, etc, etc.
This is the first truly hopeful news I've ever heard for us. There
are several areas of the brains and spinal cords of PPSers that were
damaged by the polio virus.....it boggles the mind to think those cells
may be replaced. Just had to share this with everyone, even though
application to patients like us is probably far into the future.
Peggy
-----
Subject: Wheelchair design
From: James <jdebondi@yahoo.com>
Hi all
Take a look at
http://www.carmagazine.co.uk/first_drive.php?sid=1216&page=1
- you might need to cut and paste.
It shows what can happen when a big company - in this
case Toyota - starts thinking.
Enjoy
James
-----
Subject: Local newspaper story on polio survivors
From: Margaret <nielsen@MSU.EDU>
The Lansing State Journal (in
Lansing, Michigan) published this front-page story about Post Polio
Syndrome after interviewing two members of our local post polio support
group. We had contacted the reporter in response to Polio Health
International's call to let people
know "We're Still Here!"
The story is fine, although its headline doesn't quite fit.
Here's the link. Hope it works.
http://www.lsj.com/apps/pbcs.dll/article?AID=/20071008/NEWS01/710080344/1001/news
Margaret
-----
Subject: New Medication for PPS;
From: breezee52 <breezee52@yahoo.com>
New medication for fatigue and pain.
http://biz.yahoo.com/prnews/070919/ukw013.html?'
I do hope this link works.
Sandy
-----
Subject: (Fwd) Now available Polio Voices: An Oral History...
From: Scout <Scout@SKALLY.NET>
------- Forwarded message follows -------
Julie Silver and Daniel Wilson, Polio Voices: An Oral History from
the American Polio Epidemics and Worldwide Eradication Efforts
(Westport,CT: Praeger, 2007). It is available at both Amazon and
B&N. Me Birders.I didn't check.
------- End of forwarded message -------
-----
Subject: Papers: Polio survivors' later challenge
From: Scout <Scout@SKALLY.NET>
Polio survivors' later challenge
Washington Times - Washington,DC,USA
By Ann Geracimos
http://tinyurl.com/39qhf8
Excerpt:
"Dr. Lauro Halstead, semiretired at age 71, knows what it is like to
cope in this manner. A founding director of the Post-polio Clinic at
Washington's National Rehabilitation Hospital (NRH), he had what he
calls a good recovery from polio until about 20 years ago, when he
began to get some weakness in his legs and found it harder and harder
to walk long distances. Today, his right side is handicapped to the
point that he relies on a motorized scooter to get around.
He became interested in what he calls "the whole problem" while
working at the Baylor College of Medicine in Houston, where he
started his first clinic. Coming to Washington in 1986 — at one point
in charge of spinal-cord injuries at NRH — he begin the post-polio
program that since has had several thousand polio survivors as
outpatients."
Picture of Dr. Halstead is also in this article.
-----
Subject: Red Rice Yeast
From: eddie <ebollenbach6400@CHARTER.NET>
The fermentation product within Red Rice Yeast, a few years ago, was a
statin like Lipitor. I don't know what the dosage was but that is why
some people had luck with it in lowering cholesterol. One batch may have
been different from another because nutrient supplements aren't
regulated as prescription drugs are. The FDA, I believe, now requires
that Red Rice Yeast in the United States not have the statin in it, so I
am sure it's cholesterol lowering effect has been emasculated.
On the other hand If you have a cholesterol problem, say a value of 300
total cholesterol, you have a probability of cardiovascular disease,
including death by myocardial infarction, stroke, or the cognitive
decline of dementia at a rate of about 15 percent greater than someone
who has a normal cholesterol.
Statins, according to several studies, which have been published, and
assume we are all the same, states that muscle aches sometimes do occur
and very rarely a serious muscle breakdown can occur. The statins
inhibit the enzyme that makes a chemical called ubiquinon convert to
Coenzyme Q10. Coenzyme Q10 is in the blood and inside every cell of the
body, within little membrane enclosed structures that manufacture energy
for the cell to operate. Generally, the muscle problems that occur in
the few normal individuals who take statins is determined genetically
so, knowing that, one could say that post-polio people have no greater
chance for muscle aching due to statins than anyone else. However, there
have been studies done with high performance athletes, like competitive
swimmers, who exhaust their muscles during training. In these groups the
aches and pains from statins are greater than for normal sedentary
people, although a good percentage of them can tolerate the statin and
continue their workouts. A good percentage cannot tolerate them either.
It is logical to assume a couple of things:
1. People with PPS are using their weakened muscles as much or more than
top athletes are using theirs and a greater percentage of them will not
be able to tolerate statins when compared to normals. In all the
athletes who couldn't tolerate statins, due to muscle aching, after
discontinuing the statin they returned to normal in a short time. The
aching subsided. So none of the damage was permanent. I think we can
assume that with PPS the same thing would happen.
2. In a good percentage of people with PPS and high cholesterol can take
a statin is with no untoward effect and nothing will change except the
cholesterol will go down. I would encourage people to take CoQ10 200 mg
or more while taking the statin because all statins work by greatly
slowing its production inside cells. Q10 is further broken down to
produce energy so in it's absence less usable energy is produced. For
example, after taking a statin the blood concentration of CoQ10 goes way
down. Supplementation with CoQ10 should keep it up so you are just
skipping the step where ubiquinon changes to CoQ10 by bypassing the
enzyme that the statin inhibits.
If you have a high cholesterol and an increased risk of the disastrous
consequences mentioned above, try one out at low dose and see what
happens. You may be surprised. Personally, I take Lipitor and have not
experienced any worsening of muscle discomfort. The reason I take
Lipitor is because it is a lipid (or fat) soluble statin so it can get
into the brain. That way if I am lucky I can keep my brain working right
a little longer. Drugs that are lipid soluble (even blood pressure drugs
like the ACE inhibitors), have varying degrees of lipid solubility and
the ability to get into the brain. I use the ones that are more lipid
soluble.
I took a chance and it seems to have worked out..................Eddie
-----
Subject: Re: Social Security Disability ruling
From: Brenda <BLBL966@MSN.COM>
Here's the link and some of the info. in the article.
Brenda
http://www.englewoodhospital.com/medservices.cfm?pageid=425&bc=0,8,158,198
Getting SSDI for Post-Polio Sequelae.
Dr. Richard L. Bruno
Chairperson, International Post-Polio Task Force
Director, The Post-Polio Institute
The International Centre for Post-Polio Education and Research
Englewood (NJ) Hospital and Medical Center, USA
Toll Free: 877-POST-POLIO; (201) 894-3724
E-Mail: postpolioinfo@AOL.COM
It is not true that it is Social Security Administration (SSA) policy to
deny Social Security Disability
Income (SSDI) payments to polio survivors. In 1985 we wrote the
document that allows polio survivors to get SSDI, called the POMS for
Evaluation of the Late Effects of Poliomyelitis (24580.010).....
-----
Subject: When swallowing food becomes a problem
From: Scout <Scout@SKALLY.NET>
When swallowing food becomes a problem
PakTribune.com - Pakistan
Thursday July 26, 2007 (1712 PST)
http://paktribune.com/news/index.shtml?185122
excerpt:
"The Stages of Swallowing
One person in 17 eventually develops dysphagia. The symptoms vary
with the cause, but they can include chest pain upon swallowing and
the ability to swallow only very small amounts of food, only liquids
or only solids, or no food at all. Some people feel as if food is
stuck in their throats or chests. Choking, coughing or regurgitating
small amounts after swallowing are other symptoms." (goes on to list
the 4 stages).
-----
Subject: This should be an interesting book...
From: ET <eeetsel@gmail.com>
http://www.nytimes.com/2007/08/05/books/review/Combes-t.html?_r=1&8bu&emc=bu&oref=slogin
A Time to Heal By ABBOTT COMBES Published: August 5, 2007
'Warm Springs: Traces of a Childhood at FDR's Polio
Haven'<http://www.nytimes.com/2007/08/05/books/review/Combes-t.html?8bu&emc=bu>
By SUSAN RICHARDS SHREVE
Reviewed by ABBOTT COMBES
A memoir of a childhood, an illness, family and friendship in the 1950s.
-----
Subject: Newspaper article
From: Richard Daggett <richarddaggett@CA.RR.COM>
Hi all -
Please check out this link:
http://www.thedowneypatriot.net/articles/articles04.php
A couple of minor inaccuracies, but I thought it was nice. The newspaper
wanted to highlight the work being done at Rancho Los Amigos National
Rehabilitation Center, and they
thought it would be more appropriate in
the context of a human interest story.
Richard
-----
Subject: Statins
From: David <dmschroeder@shaw.ca>
My doctor has prescribed some statin drugs for me to avoid a possible
stroke. I seem to recall that statins are not good for polio surviors.
My question is, is there any information avaiable on the effects of
statin drugs on polio survivors? Let me know.
--
From: Scout <Scout@SKALLY.NET>
David.. The Post-Polio Health International site is being revamped..
but somewhere in the archives of the issues of their newsletter is a
wonderful article by Dr. Julie Silver titled something like "myths..
"
http://www.post-polio.org/edu/pphnews/pph18-2.html#pol
Many polio survivors on the PPMed list have been taking statins for
years without any ill affects and like the non-polio population some
have had bad side affects from those drugs. All drugs have possible
side affects.
Of note.. one possible side affect of statins is increased muscle
weakness.. so if you take a statin, this is something to watch out
for for sure.
If it were me, and I'm *not* a health professional, I would either
give the statin a try and just watch for side affects or ask for
alternative therapies... including life style changes and/or other
drugs perhaps.. but I would do something, you don't want a stroke for
sure.
As I said, all drugs have possible side affects, you shouldn't take
any drug without doing at least 2 of 3 things..
1) ask the perscribing physician about possible side affects and
drug/food interactions
2) ask your pharmasist about possible side affects and drug/food
interactions
3) look the drug up on the internet :-)
I'm glad you wrote, there is a lot of misinformation out there, some
of it very dangerous and too much of it written by so called
"experts".
As far as I know there have been no reputable studies on statins and
polio survivors.
Good luck!!!!!!!!!!
--
From: PHartke@AOL.COM
Regarding statins, the San Francisco Bay Area Polio Survivors (SFBAPS)
had Dr. Sandel speak about this topic at our April 2007 meeting. A
transcript of that presentation we printed in our SFBAPS May 2007
Newsletter, along with an excellent article of interview with Dr.
Golumb that is on the Internet. Several post-polio support groups are
reprinting Dr. Sandel's presentation article in their newsletters. If
anyone wants to view it or Dr. Golumb's article, please contact
_SFBAPS@aol.com_ (mailto:SFBAPS@aol.com) ..
Phyllis Hartke, SFBAPS
-----
Subject: Statins and Co-Q-10
From: Kathryn <krosenth@TECKSTUDIO.NET>
As long as we're talking about statins, this is FYI re. statins &
Co-Q-10:
Kath
FDA Public Health Advisory on the Statin Drug Crestor (rosuvastatin)
The following information was published by the U.S. Food and
Drug Administration, (FDA) on March 2, 2005
Astra-Zeneca Pharmaceuticals today released a revised
package insert for Crestor (rosuvastatin). The changes to the label
highlight important information on the safe use of Crestor to reduce the
risk for serious muscle toxicity (myopathy/rhabdomyolysis). At this
time, the FDA is also making statements about the muscle and kidney
safety of Crestor based on extensive review of available information.
-
ALL statins can block the synthesis of Coenzyme Q10
The Following Information is from epic4health.com NOT the FDA.
Crestor (Rosuvastatin), Lipitor (atorvastatin), Zocor
(simvastatin), Pravachol (pravastatin), Lescol (fluvastatin) and Mevacor
(lovastatin) are in a class of cholesterol lowering drugs known as
statins. Most statins appear to do a terrific job lowering cholesterol
in the majority of individuals taking those products as prescribed.
However, all statins can block the synthesis of Coenzyme Q10 in the body
which may lead to sub-optimal CoQ10 levels which can then lead to a
number of physical problems the most common being muscle aches and
weakness so supplementation with Q-Gel Coenzyme Q10 is a prudent
approach when undergoing "statin" therapy.
--
Subject: Re: Statins and Co-Q-10
From: eddie <ebollenbach6400@CHARTER.NET>
Kathryn wrote: Co-Q-10:----------
Some of us that had to suffer through the biochemistry of energy
production inside cells and inside small football shaped objects called
mitochondria know all too well about CoQ10. As a matter of fact, if
memory doesn't fail me, CoQ10 is the substance produced when ubiquinone
loses a hydrogen and gets what we call oxidized inside cells. The
statins inhibit that reaction so CoQ10, which is oxidized ubiquinol, is
inhibited more or less depending on the dose of statin. CoQ10
concentration drops rather precipitously during statin therapy. It is
normally used within the mitochondria to produce energy for all kinds of
cells, not just muscle cells. So everything downstream from CoQ10 slows
down from statin use. These are the reactions that result in the
production of energy for all cells.
Whether or not you have symptoms from the use of statins doesn't have to
do with polio as much as it has to do with heredity. If your parents
took statins and have had muscle problems (weakness or soreness) this is
a larger predictor if you will have problems than the fact that you had
polio. Notwithstanding that if we do have weakness it will be overlayed
on polio, which is bad.
Since the Q10 concentration in plasma and cells drops with statin
therapy it would be prudent to take the supplement. I would take more
than 100 mg. 200mg is good. This should restore your plasma Q10.
The statins have been very good in that they not only reduce cholesterol
but stifle some inflammation that can have a deleterious affect on
cardiac and brain function. Recently I was put on Lipitor 10 mg. I swim
every day very hard and have not noticed anything.
There are statins that dissolve in water (hydrophilic) and statins that
dissolve in fats (lipophilic). Lipitor is a lipophilic statin. That
means it dissolves in fat and can cross the blood brain barrier. So, in
addition to preventing heart disease and stroke there is some data in
the research community that a lipophylic statin may just help with
dementia later on, although there are also some reports that cognitive
declines (small) are seen with the lipophylic statins.
Eddie
-----
Subject: Ireland: Post polio book launched
From: Scout <Scout@SKALLY.NET>
Post polio book launched Irish Health - Ireland
http://www.irishhealth.com/?level=4&id=11860
Excerpts:
"A new book launched yesterday is aimed at informing health
professionals who treat the thousands of Irish people suffering from
post-polio syndrome. ...
... Launched by the Minister of State for Health and Children, Dr
Jimmy Devins, the post polio syndrome book aims to increase the
awareness and knowledge of health professionals who treat polio
survivors suffering from the syndrome. ...
...The book 'Post Polio Syndrome - Management and Treatment in
Primary Care' contains up-to-date information on most aspects of the
care requirements of the thousands of Irish people displaying the
symptoms of post polio syndrome. ...
...The book will be distributed free of charge and will be a resource
providing multidisciplinary information for GPs, physiotherapists,
occupational therapists, social workers, and nurses both in hospital
and community environments. "
--
From: Mary Ellen <metormey@COMCAST.NET>
For David and anyone else interested:
The booklet is available for downloading in its entirety as a pdf and
is 65 pages long.
http://www.ppsg.ie/dloads/PostPolioBooklet.pdf
Warm regards,
Mary Ellen
--
From: Judith Pipher <Pipher@execpc.com>
March of Dimes has created one for us to use here in the US. Contact
your nearest MOD for some copies. They're no-charge.
- JB
-----
Subject: Marguerite Vogt, 94, Dies; Biologist and Researcher on Polio Virus
From: ET <eeetsel@gmail.com>
http://www.nytimes.com/2007/07/18/science/18vogt.html?ex=1342411200&en=bf4f0e9b912a146e&ei=5089&partner=rssyahoo&emc=rss
ET
-----
Subject: Polio support [conferences/get-togethers]
From: JKH <arojann@YAHOO.COM>
Well, having lived in three very diverse areas of the US, I will give
my 2 cents on conferences and support groups with apologies to any toes
I might inadvertantly step on. I found it hard in Baltimore to find a
support group in such a large city where I found out the closest one was
south of the city at the library in Columbia, MD. There is a nice
support group in Ocala, FL, where I went a few times when we where
there. But, I have not yet found an active group out here in the great
Pacific NW, but there is supposed to be one south of me down the I-5 in
Everett, I believe. If anyone from there is reading this list, please
email me!
As for conferences/retreats, there are many around the country (and
abroad, too). I have attended the St. Louis one last time (2005, I
believe) and it is the largest and definately not cheap. We stayed at
the casino in our RV and found the metro very accessible. Most, of
course, were at the hotel. It was a fun gathering full of great,
up-to-date information. I enjoyed it and would go again. My problem
now is the challenge of travelling alone.
Richmond, VA area has an annual retreat in Sept. so if anyone is in
the area and wants to meet some special, friendly PPSers, it is a great
group. They have a speaker(s) on Saturday afternoon, but usually
someone local (Dr. Halstead did attend one year I was there). I enjoy
the laid back atmosphere and meeting fellow PPSers in a smaller group.
I have just received their info for this year, if anyone is
interested, let me know.
Just attended the Miami, FL, conference in April. It was my first
time there, and it was well done and attended by many. Good speakers,
both local and from abroad (Australia, England, etc). I was in Florida
at the time and my brother drove me down to the conference from north
central FL. Always a bonus for me not to have to fly in. I also was
able to do the cruise after the conference with another Polio survivor
from TX, and we had a great time. The Boca Raton Group does one or two
"accessible" cruises each year leaving from the port of Miami. It is a
nice cruise for anyone who would like to give it a try and mostly
accessible on-board, especially. But, not all the ports of call are
accessible. But, at least NCCL is trying to be accomodating.
We also timed a European Vacation, by train, to attend Hilary's group
in England one September. It was great being able to meet with them on
our first trip there. It was an AGM, not a conference, so it was group
business, but some interesting speakers as well.
I find the get-togethers with others as good for me as the speakers.
Have never been to Branson, so I do hope to be able to find a way to
do that one next year. So, if anyone else will be going. See you
there....Jann
-----
Subject: Beating the odds -- PPS -- an awesome story.
From: cmareb@aol.com
Beating the odds
http://www.dailysouthtown.com/news/459243,081NWS1.article
July 8, 2007
By Vickie Snow Staff writer
After smacking the skins to 22 songs by the likes of Lynyrd Skynyrd, ZZ
Top and the Red Hot Chili Peppers, drummer Kevin Laverty starts inging,
too, without sounding one bit out of breath.....
-----
Subject: Re: Radio broadcast on PPS
From: PPRG <together@pprg.org>
"Remembering Polio" on 'Ideas' - CBC Radio One documentary
"The polio epidemics of the 1950s struck thousands of Canadians,
especially children. Braces, wheelchairs and the Iron Lung became
symbols of the polio threat. By 1960, thanks to new vaccines, the
virus was under control. Why then, almost fifty years later, are
concerns about polio surfacing again? Maria Meindl traces the legacy
of polio, a disease we thought we’d left behind."
It was certainly one of the best, if not the very best, of any such
programs I have heard. They had a good mix of personal stories, informed
commentary, and clear, complete explanations by very good PPS doctors.
This episode (the last of 2) dealt with PPS and somewhat with the polio
eradication efforts.
I'm sorry I missed the first part, because this one was so good. The
fact that it was about polio in Canada made it no less relevant to those
of us in the U.S. In fact the great majority of the program was relevant
to people anywhere in the world.
They do offer CDs of both programs through the website. Just fill in the
request form for the 2 CDs "Remembering Polio" at
http://www.cbc.ca/ideas/transcripts/index.html#orderform
There is a description and some great pictures online at:
http://www.cbc.ca/ideas/features/polio/index.html
They also have links there for ordering transcripts, audio tapes, or cds.
Thanks for the heads-up, Judith.
Michael
--
Michael Odle
PPRG Internet Coordinator
Together@PPRG.org
http://PPRG.org
We're all in this together.
-----
Subject: IVIG
From: Sarah <sarahbee@OLDWIZ.NET>
I am reading NewsMax again and found another interesting article to
share, as we have discussed Intravenous Immunoglobulin in our letters.
This particular article refers to the help it may give to Alzheimer's
patients but the last paragraph may show some benefit for us.
1. Natural Defense Against Alzheimer's Found
A research team of physicians and scientists at New York-Presbyterian
Hospital/Weill Cornell Medical Center has discovered naturally
occurring antibodies in human blood that possibly defend against
Alzheimer's and other neurodegenerative illnesses.
The antibodies zero in on specific types of proteins that are toxic to
brain cells. The antibodies target masses of beta amyloid proteins
called "oligomers," while ignoring single-molecule forms of the very
same proteins. These "oligomers" have the potential to grow into
insoluble "fibrils" that cluster around brain cells, and are a
hallmark of Alzheimer's.
Lead researcher Dr. Norman Relkin said the team has been testing
Intravenous Immunoglobulin (IVIG), which is an antibody-based
immunotherapy, as a possible new treatment for Alzheimer's. Laboratory
studies confirmed that IVIG bound very little of the single-molecule
protein ("monomers") while it indeed bound up the aggregate form
("oligomers").
The antibodies apparently recognize the aggregate form by its shape.
"That was a surprise, because most antibodies work by recognizing some
aspect of the chemical structure of their target -- not their shape,"
said study co-author Dr. Paul Szabo. "That means that even though beta
amyloid monomers and oligomers have the same fundamental chemical
makeup, human anti-oligomer antibodies can distinguish between them.
The antibodies recognize a particular shape that proteins assume only
when they become these toxic aggregates."
Dr. Relkin said the antibodies can also recognize other unhealthy
forms of proteins such as those associated with Parkinson's, Lewy body
dementia, and the human form of "Mad Cow" disease, as well as other
illness-causing forms of proteins. While the scientific findings are
clear, the relationship of the findings to actual benefits to patients
requires much more study, the team concluded. However, experts say
that this discovery is a big step forward in our understanding of
Alzheimer's and other neurodegenerative diseases.
http://news.newsmax.com/?pUYaDKMB6J3p3irSCwT.jnPKkXp&http://www.newsmax.com/email.shtml
-----
Subject: Total knee arthroplasty in patients with poliomyelitis
From: Scout <Scout@SKALLY.NET>
J Arthroplasty. 2007 Jun;22(4):543-8.
Total knee arthroplasty in patients with poliomyelitis.
Jordan L, Kligman M, Sculco TP.
Hospital for Special Surgery, New York, New York.
Between 1991 and 2001, 17 primary total knee arthroplasties were
performed in 15 patients with limbs affected by poliomyelitis. Eight
patients had a constrained condylar knee design, 8 a posterior
stabilized design, and 1 a hinged design. Mean follow-up was 41.5
months. The mean Knee Society knee score improved from 45
preoperatively to 87 postoperative. Knee stability was obtained in
all patients, including 4 patients with less than antigravity
quadriceps strength.
Radiologic evaluation showed satisfactory alignment with no signs of
loosening. Complications included 1 case of deep venous thrombosis
and 2 knees that required a manipulation for stiffness.
Pain relief, functional improvement, and knee stability can be
achieved after constrained total knee arthroplasty in patients with
poliomyelitis despite impaired quadriceps strength, and osseous and
soft tissue abnormalities.
PMID: 17562411 [PubMed - in process]
-----
Subject: custom shoes
From: kavanow <kavanow@COX.NET>
For those who are searching for a company that makes quality custom
shoes, look into "Noonan Custom Footwear" in Warren RI. This company has
taken over Luzzi Shoes that has closed because of retirement. I was a
customer of Luizzi since the mid 80's and have since had four pr's of
shoes made at Noonan's These are not "space shoes" but fantastic
looking shoes. I am always pleased with the fit and look. I know that I
would not be walking as good as I am able if not for these shoes. I hope
this info will help those looking for shoes.
Gary B.
www.noonanshoe.com
-----
Subject: Modafinil for treatment of fatigue in post-polio syndrome.
From: Scout <Scout@SKALLY.NET>
Neurology. 2007 May 15;68(20):1680-6.
Modafinil for treatment of fatigue in post-polio syndrome: a
randomized controlled trial.
Vasconcelos OM, Prokhorenko OA, Salajegheh MK, Kelley KF, Livornese
K, Olsen CH, Vo AH, Dalakas MC, Halstead LS, Jabbari B, Campbell WW.
Department of Neurology, Uniformed Services University of the Health
Sciences, Bethesda, MD, USA. ovasconcelos@usuhs.mil
OBJECTIVE: To determine if modafinil can improve fatigue in patients
with post-polio syndrome.
METHODS: We used a randomized, placebo-controlled crossover trial.
Intervention with modafinil (400 mg/day) and placebo occurred over 6-
week periods. Primary endpoint (fatigue) was assessed using the
Fatigue Severity Scale as the main outcome measure. Other measures
included the Visual Analog Scale for Fatigue and the Fatigue Impact
Scale.
Secondary endpoint (health-related quality of life) was assessed
using the 36-Item Short-Form. Analysis of variance for repeated
measures was applied to assess treatment, period, and carryover
effects.
RESULTS:
Thirty-six patients were randomized, 33 of whom (mean age: 61 years)
completed required interventions.
Treatment with modafinil was safe and well-tolerated. After adjusting
for periods and order effects, no difference was observed between
treatments.
CONCLUSION: Based on the utilized measures of outcome modafinil was
not superior to placebo in alleviating fatigue or improving quality
of life in the studied post-polio syndrome population.
Publication Types:
* Research Support, U.S. Gov't, Non-P.H.S.
PMID: 17502549 [PubMed - in process]
-----
Subject: Re: medicine
From: eddie <ebollenbach6400@CHARTER.NET>
Between 1951 and 1953 William McDowall Hammon carried out the first
trial to prevent polio. He collected a protein component of the blood
that we call gamma globulin from patients who had polio and had
therefore produced antibodies to the polio. The globulin fraction of
blood proteins is the part where we find antibodies . It can be
extracted from clear blood sera after the blood cells have been removed
by adding various chemicals to drop out the globulins and leave the
albumins and other proteins behind. If the albumins are then subjected
to an electric field on porous paper or a gelatin like material called
agar the component separates into alpha, beta, and gamma globulins.
Gamma globulin can be further treated to result in mostly antibodies of
the IgG class. This is called immunoglobulin.
I believe some kids were injected parenterally ( Not through the
intestine --- I believe these preps were inoculated, not drunk). So the
entire group of antibodies that a person or group of persons who are
donors was distilled to the gamma globulin portion and injected, further
distillation produces IVIg or intra venous Immunoglobulin which is
currently being used for lupus and other autoimmune diseases, and there
have been trials in PPS which have shown mixed results. It is possible
that a fraction of IVIg will be more helpful with PPS. Possibly pure IgG
or IgA or something like that. These antibodies require the pooling of a
large amount of donor blood.
The gamma globulin with antibodies against polio from people's immune
sera would help if all three serotypes of polio were present and the
passive immunity would only last for a short time. I think the stuff you
may have been drinking may have been vitamin or cod liver oil or
something like that. If you take globular proteins orally a lot of them
get broken down and digested. Eddie
PS below you will find an abstract of Hammon's paper
http://www.ajph.org/cgi/content/abstract/95/5/790
-----
Subject: Easy diet?
From: JKH <arojann@YAHOO.COM>
Well, not to put down the "easy" diets as it would be great to have one
that works, but anyone who knows me at all knows I have been dealing
with nutrition (and weight loss) for a very long time...and I am
learning every day how much I don't know, LOL. There is an amazing
amount of help on the internet for diabetes education, weight loss and more.
Try googling" "Joslin Diabetes." They have a great website, and
discussion group.
I would suggest that anyone wanting to eat better should start with
nutrition, a basic book or course. There are many free courses taught
at hospitals and clinics (usually for diabetes, or heart health). You
might want to call around and see what's available in your area. I love
the recipes (nutritious and good) from a book called "Power Nutrition
for Your Chronic Illness" by Kristine Napier. It can be ordered through
any of the bookstores (often available used).
The thing I don't like about the "diabetic" recipes is that they
often just take a calorie ladened recipe and try to substitute an
artificial sweetener for sugar. They often do nothing at all about the
carbs in the flour. You need to read labels and nutrition facts. I
look for carbs per serving (15 is generally my limit per serving). They
do a lot of carb counting with diabetes since carbs (which are
necessary) do drive your blood sugar up. Also, be sure to increase
fiber, as that is very necessary for regularity of blood sugar and other
things, too. An apple with its peel is better for you that even the
sauce (which is best with no added sugars). Cinnamon seems to be good
for you, too (and may help lower cholesterol some).
WIth recipes you can change your favorite ones to make them more
heart healthy (better fat choices), less salt (using other flavorings,
etc), and good carbs (less carbs). For instance, I no longer make (or
eat) pies for various reasons, but do make the custard fillings (with a
nutty streusal topping or even a nut crust pat-in-a-pan, for special
ocassions). Nuts are a source of protein, fiber, and good fats...just
be careful as they do count with calories.
Every one of us with PPS needs to try to limit portions and make
better food choices in order to at least maintain our weight. I
encourage people to take one step at a time...to maintain weight and
once they are good at that, then try to lose weight. Eating the best we
can is essential to our health. And, all of this would work so much
better if we could do some meaningful exercise. Even getting outdoors
with our power chairs and scooters is helpful. Swim, if you can.
Not easy for us, but if we do the best we can, it will just benefit
our overall health. I for one don't want to be eating a bunch of
artificial foods (or drinking my calories), I want food that tastes good
and is good for me...including ocassional chocolate treats! Well,
that's my 2 cents on the subject for now...Jann
-----
Subject: The problem of fatigue in neurological disorders
From: Scout <Scout@SKALLY.NET>
Wiad Lek. 2006;59(9-10):685-91.
[The problem of fatigue in neurological disorders]
[Article in Polish]
Kumor K, Pierzchala K.
Z Katedry i Kliniki Neurologii w Zabrzu Slaskiej Akademii Medycznej w
Katowicach. kum2@poczta.onet.pl
Fatigue or piercing feeling of weakness, lack of strength and energy
or total exhaustion is a common complaint of patients with
neurological disorders.
From 40 to over 90 per cent of individuals with multiple sclerosis,
Parkinson disease, amyotrophic lateral sclerosis, neuroboreliosis,
post polio syndrome or stroke confirm its experience. It is not
infrequently numbered among most disabling complaints.
A separate entity, with fatigue as a cardinal sign, is a chronic
fatigue syndrome, a disorder, though controversial, more and more
frequently diagnosed. Fatigue ought to be discriminated from
fatigability, paresis, somnolence and, first of all depression which
commonly coexists in chronic disorders.
The assessment is almost entirely based on self-estimate scales
filled in by a patient. Attainable results of neuroimaging,
electrophysiological, polisomnographic, vegetative, psychological and
biochemical surveys have not allowed yet to define the pathogenesis
of fatigue.
The treatment basis consists of behavioral therapy, psychotherapy and
a proper treatment of the basic disease.
Publication Types:
* English Abstract
* Review
PMID: 17338130 [PubMed - indexed for MEDLINE]
-----
Subject: any iowans on the board???
From: john <jkl7_2000@yahoo.com>
this is a website the state of iowa has put up to share their stories
and also those family/relatives who were around iowa in them times,,,,
they want to know how it affected them as well as the actual polio
patients,,,,,
http://www.iowapoliostories.org/index.html
-----
Subject: IvIg article is free
From: Post-Polio Health International <director@POST-POLIO.ORG>
The European Journal of Neurology
http://www.blackwell-synergy.com/loi/ENE
has as its Free Sample Issue the
January 2007 journal and it contains "Post-polio syndrome patients
treated with intravenous immunoglobulin: a double-blinded randomized
controlled pilot study" by the group of
physicians in Norway. This is the link for the html of the whole article
http://www.blackwell-synergy.com/doi/full/10.1111/j.1468-1331.2006.01552.x
Joan
-----
Subject: Resistance Training and Polio
From: Scout <Scout@SKALLY.NET>
Business Portal 24 (press release) - Bad Lausick,Sachseri,Germany
Article Dashboard
Resistance Training and Polio
By: Lanny Schaffer, Ph.D-4885
[Dr. Lanny Schaffer is an Exercise Physiologist and the President of
the International Fitness Academy.]
http://tinyurl.com/ypsdpo
Excerpts:
Polio victims have the capability to compensate for their condition.
This is done by two methods:
*Muscle fiber hypertrophy. This most likely occurs when a load is
placed on an already weakened muscle. The muscle responds similar to
heavy lifting. Muscle fibers significantly increase in size but not
in number.
*Nerve fiber re-innervation. Nerves are capable of re-innervating
four to ten times the number of muscle fibers they service. Polio
sufferers can acheive this phenomena through resistance training.
While Polio victims are capable of enlarging their muscle fibers just
like healthy people, endurance can be a problem as the mitochondria
(power houses of the cells) don't increase simultaneously. Endurance
training can result in a chronic fatigue-like syndrome and long
lasting weakness."
-----
Subject: Re: Web site (C-Pap)
From: Judith <Pipher@execpc.com>
Check out www.cpaptalk.com
There are veterans there who will
help you out with whatever questions you might have. Great site!!!!
(they even will teach you how to adjust
your machine yourself!)
- JB
----- Original Message -----
From: Rod
Hi
For those that use cpap or
bipap machines I found cpap.com a good site to visit. When
I first started with my bipap machine I was always getting sinus
infections site mentioned above gave me the answers to
solve the situation.
Rod
-----
Subject: Motor Neurons and Aging
From: Eddie Bollenbach <edward.bollenbach@SNET.NET>
There have been two recent papers on the "cause" of PPS, Sorenson et
alia, and last week another from the
University of Pennsylvania. It is very
important to get at the cause of PPS because it may be possible to
reverse
loss of function, pain, fatigue, and weakness, or at least mitigate
these symptoms
only if we know what started them. For example, if we find that Tumor
Necrosis
Factor is way too high in the spinal fluid in PPS and there is a
consequent loss of
end fibers to muscles because of this with PPS, and we remove TNF, it
may be
possible to halt damage and/or rehabilitate an individual. That is why
the two
papers that state PPS is due to aging alone are disappointing to the
average
PPS patient. Also, if this is so, I think this may dampen research that
can help.
Neither of the two preceding facts matter though if we are to find a
"cause".
To do that we must maintain an open mind and study all
the research.
I have reservations regarding both of these MUNE studies. For one thing
the Motor Unit Number Estimate technique betrays itself in the last word
of its name: estimate.If you are looking for numbers of motor unit loss,
that can compare normals with those who have had polio or have PPS, I
would feel comfortable with a measuring technique that has more
precision. A few years ago a researcher named McComas did a study using
MUNE and came up with double the number of lost motor neurons in PPS
patients than in normals that the last two papers did.
More to the point, any cause of PPS should explain certain questions
about PPS clearly and unequivocally. Here are a few:
1. Why do some people get PPS and others not? Some, with non-paralytic
polio, which is mild and does not cause flaccid paralysis, acutely
develop PPS. Others who had paralytic polio, like myself, must now use
wheelchairs and other adaptive devices that they didn't need during the
original infection. Many papers on PPS state that the incidence of PPS
among polio survivors is 20 to 40 percent. Why? Neither paper on Motor
Unit Number Estimates that state aging is the cause or explain this
observation. They don't even include a group of people who had paralytic
polio but not PPS as a control. I assume, the way the study was done
they would have found old polios without PPS lose motor units at the
same rate too. But the MUNE papers neglected to consider these facts so
evident in the post-polio literature.
2. Early on, in doctor Halstead's March of Dimes sponsored book, there
is a picture of a muscle bundle of myofibrils (muscle cells) from a PPS
patient. I believe, from memory so I may be wrong, that this microscopic
picture was done at NIH or at another reputable research center. Within
the bundle of maybe a hundred muscle cells there were 3 or 4 shrunken
atrophied cells but the rest of the bundle was intact and the cells
appeared normal. In ALS the entire bundle would atrophy and cease to
function. But in PPS only a few cells here and there, separated by
several other cells, dropped out. The interpretation of this photograph
is that end fibers of neurons, rather than the neurons themselves, for
the most part, were dying due to PPS. If an entire motor unit dropped
out, typically in ALS, the pattern of dead muscle cells would be
different and obvious. Why is this? We have seen under the microscope in
several publications morbidity of the end fibers of neurons rather than
the entire neurons. If enough end fibers drop out we would have PPS.
The assumption has been that overburdened neurons start losing the
ability to support excess end fibers. If so, logically, we get the
overuse hypothesis of the cause of PPS. But even that does not account
for the people damaged by polio but retaining a diagnosis of no PPS.
Personally, I think that loss of fibers creates a weakness that other
muscles cannot compensate for, at a point. That creates pain and overuse
syndromes and the discomfort we have all felt. Yet I, now using a chair
full time, manage to swim competitively, and have for the past 15 years,
winning many Masters Swimming races against my normal peers and those
even younger, although it has been a long road and I don't recommend it
to others. The point is that my gut tells me there is another factor or
factors that are active in the development of PPS. This to me is a very
interesting aspect of PPS and deserves further research. The two MUNE
papers mentioned offer a very simple explanation of PPS without
accounting for unexplained aspects of the disease and not mentioning the
muscle biopsy photos and scattered atrophy of individual fibers found
repeatedly in muscle biopsies of PPS patients.
3. On the scientific research side these two papers have not accounted
for the retrieval, from the spinal cord, of genetic material in the form
of defective RNA of poliovirus from the cords of those with PPS but not
in those old polios without PPS. This has been documented in London by
Shariff, at the NIH by Dalakis, and at the Pasteur institute in Paris by
several researchers. We do not know the significance of this. Old virus
that is defective has remained for years within the spinal cords of
those with PPS, and presumably those without PPS, but they do not show
up now in those without PPS who have had paralytic polio. Why, when
polio infections involve millions of particles (the virus is very small
as viruses go) and if aging results in death and/or lysis of motor
neurons we should have all those who had polio showing these particles
of polio's genetic material. But we do not. Sharieff even stated in his
paper that these defective provirus particles indicate infection as the
cause of PPS. Neither of our two MUNE papers discuss these phenomena.
Another development is the recent discovery that there are immune
chemicals called cytokines in the spinal fluid of those with PPS that
exceed in concentration those commonly found in Multiple Sclerosis.
Experiments by Borg and Gonzalez in Sweden at the Karolinska Institute
have shown that after removal of these immune chemicals from the spinal
fluid of those with PPS by using Intravenous immunoglobin ( IVIg) there
were small to moderate improvements in fatigue, in one paper, and
improvement in weakness in another. Personally, since PPS damages muscle
fibers, I wouldn't expect dead fibers to resurrect and function even if
the cause was eliminated. However, I would like to see comprehensive
rehabilitation and physical therapy after treatment with IVIG or some
other agent that can remove offending cytokines (there are several that
remove specific cytokines but not the total mix we find in PPS). Or it
is possible we can achieve the removal of this toxic mix with a
component or components of IVIg without the entire formulation. Insulin
type growth factor was tried early in the quest to help PPS but didn't
work. It was recently found that TNF blocks IGF receptors. Maybe it
could be tried after IVIg. The MUNE papers don't account for any of this
stuff. Another point that I have not failed to observe is that the
Shariff work on poliovirus RNA particles and the Borg Gonzalez work on
immune chemicals (cytokines) do support one another but aging doesn't
support either one. We all age but we do not all develop PPS, harbor
polio genomes, or cytokines in our central nervous systems..
4. Why do some of us develop PPS in our 30's or even earlier? How much
damage can aging do there? I believe that as we go forward past 60 years
there should be an additive problem caused by the loss of motor units
due to age, especially in those who have had polio. However, I am wary
that age loss is PPS. I know people in their 80s with limbs atrophied
from polio who still get around fine and do not complain of PPS.
It is for these reasons and others, I am sure will come to me later,
that I am having a hard time attributing PPS to aging. It's not that it
gives the wrong impression to the public and may stifle some research
that bothers me. But scientifically, it doesn't fit with earlier
research in any kind of elegant way. Watson and Crick, while working on
the structure of DNA in the 40's, commented that you always know you
have something in science when your model starts showing you things, and
accounts for properties, that you knew about before you started your
research. It's like everything starts to fall together. This is
certainly not the case with the two MUNE papers. I think we can do better.
Eddie
-----
Subject: alternating air mattress
From: Suzanne <highroller@CRUZIO.COM>
After using memory foam, which didn't work, my O/T got me an
'alternating air mattress' which is what they use for the terminally
ill to prevent pressure sores. I find it brilliant and can now lie
on my hip all night.
Great suggestion. In the hospice work I've done, this type of mattress
is used alot, especially for folks who can no longer move themselves.
None of our patients ever developed bed sores and were very comfortable
even when lying in the same position for many hours.
Suzanne
-----
Subject: Good Outcome With Joint Arthroplasty for Osteoarthritis in...
From: Scout <Scout@SKALLY.NET>
Good Outcome With Joint Arthroplasty for Osteoarthritis in
Poliomyelitis Patients: Presented at the 2007 Annual Meeting of the
American Academy of Orthopaedic Surgeons (AAOS)
DG (Doctors Guide) News - USA
By Jill Stein
SAN DIEGO, CA -- February 15, 2007
http://tinyurl.com/2ypkj5
Excerpt:
"SAN DIEGO, CA -- February 15, 2007 -- Total joint arthroplasty can
be a safe and effective treatment for osteoarthritis in patients with
sequelae of poliomyelitis, according to data presented here at the
2007 Annual Meeting of the American Academy of Orthopaedic Surgeons
(AAOS).
Harish S. Hosalkar, MD, resident, orthopaedic surgery division,
University of Pennsylvania, Philadelphia, Pennsylvania, reported
results in 19 patients with poliomyelitis who underwent 21 joint
replacement procedures for pain and arthritis. The procedures
included 10 knee arthroplasties, 9 hip arthroplasties, and 2 shoulder
arthroplasties."
-----
Subject: Wheelchair Segway
From: Eric Eales <eae@shaw.ca>
For those hazy crazy lazy days of summer? Or the present ice and snow?
http://nextlust.com/wheelchairs-segways-hotness
Eric (If I only had the stomach muscles) Eales
skype:ericeales?add
-----
Subject: Books on Tape
From: Carol <carollm@rockbridge.net>
Don't know how many of you are familiar with Books on Tape, but they
sure have brought a great deal of enjoyment to my life for several years
now.
It's a totally FREE service for the blind and handicapped and you can
get details and connect thru your local library. Takes a letter from
your doc that you are disabled, but that wasn't hard to get. Holding a
regular book for very long triggered muscle spasms and or strained arms,
shoulders and upper back. A truly massive number of books are available
on tape, and BoT keeps me supplied with 8 to 10 books at all times,
postage paid both ways. When I return one, they send another and I can
keep them for as long as I want. The special player is also provided -
for FREE - and can go where I do. It will run all day on battery power
or plug into an outlet. Also available are special fittings for pushing
the right buttons if you have limited power in fingers/ hands and a set
of earphones is yours for the asking so I can listen without disturbing
anyone else on nights when I can't sleep.
It's all provided thru the Library of Congress and absolutely
delightful. My bod can be here, but my mind can go adventuring all over
the world via these tapes. Any type book you might be interested in is
available from biographies to who dunit's to, well, anything. A good
many top quality magazines also provide issues on tape, again for free,
just for the asking. All you have to do is get contact your local
library to get info on Books on Tape, get a letter from your doc, sign
up and you're in business. Some times I listen to a book or so a day
and other times I go weeks or months enjoying only the magazines. One
of the very few things we PPS'ers get to do our way, at our pace! And
the tapes come straight to my home - I don't have to fight my way thru
the stacks at the library - when I can manage to get to the library here.
Do give this a try! I'll be very surprised if you don't find the same
pleasure and enjoyment in them that I do.
HUGS!!
Carol
-----
Subject: Turning the Queen Mary
From: Marsha in Texas <marsha1945@AUSTIN.RR.COM>
Post-Polio Forum January 2007
http://newmobility.com/review_article.cfm?id=1239&action=browse
Bob Kafka & Stephanie Thomas:
Turning the Queen Mary
By Josie Byzek
-----
Subject: (Fwd) Depression drugs weaken bones in elderly: study
From: Scout <Scout@SKALLY.NET>
Depression drugs weaken bones in elderly: study
By Andrew Stern
January 22, 2007 | Reuters via ScientificAmerican.com
http://tinyurl.com/yvn9fy
Excerpts:
"Tests on a group of Canadians aged 50 or older found those taking
selective serotonin reuptake inhibitors had 4 percent less bone
mineral density in their hip bones."
"The 137 people in the study who took the anti-depressants also
doubled their risk of suffering a bone fracture, compared to more
roughly 5,000 participants not taking the drugs.
About one in 10 of those who took the anti-depressants fractured a
bone over the 5-year study period -- often from minor falls -- said
the researchers from McGill University in Montreal, writing in the
journal Archives of Internal Medicine."
-----
Subject: Gimp On The Go
From: JKH <arojann@YAHOO.COM>
Thanks for the info on the Gimp
Store, Marsha. I would also like to suggest people check out
"Gimp on the Go" They have some really good info for those who
travel or like to even read the travel stories of others. There
are travel stories by at least two of us on there, so
FYI, check out:
Climbing Kilmanjaro (Helen
Bergan): http://www.gimponthego.com/dest6a.htm
Cruising (Jann Hartman):
http://www.gimponthego.com/dest19a.htm
I also hope to write up the
cruise I am going on in April (unless I
can get others to do it) with the Miami PPS Group.
I am looking forward to it as
it is promised to be delightful and
accessible by others who have done it...Jann
-----
Subject: Re: Drug Interaction Website
From: Ginger <rainingwolf@GMAIL.COM>
On 1/5/07, JKH <arojann@yahoo.com> wrote:
Does anyone know of a website
to check drug interactions? I remember it from the past on one of
the lists, so I was hoping someone here might
have it. TIA, Jann
=====
There is one on Medscape at:
http://www.medscape.com/druginfo/druginterchecker?src=ads
g
--
From: Donnie <mickiemc@FRONTIERNET.NET>
There is also a lot of info on this site:
http://www.rxlist.com
Donnie
--
From: Hilary Boone <hilary.boone@LINCOLNSHIREPOSTPOLIO.ORG.UK>
Hello JKH,
I also use Drug Digest..
http://www.drugdigest.org
Found a rare but known side effect for one of Richards drug
combinations and he had it, others did not, so I check Medscape and
Drug Digest and have also used the Pharmacy ones as well.
Hils.
-----
Subject: Check out "TBO News
Video - Tampa Bay News Video from TBO.com
- Post Polio Syndrome"
From: GRRoyce@AOL.COM
Tampa Bay (Florida) News Video about PPS and Polio survivors
http://www.tbo.com/news/reports/postpolio/
This is a 4.28 minute flash file
"Post Polio Syndrome"
Tampa Bay News Video
Some who survived the debilitating effects of polio are now affected
by post-polio syndrome. Hear the stories of some Bay area polio
survivors and watch a video highlighting the disease=E2=80=99s effect on
their lives, and the spirit and determination that has sustained
them."
-----
Subject: Good news from PHI: Grant Awarded
From: Judith <Pipher@execpc.com>
POST-POLIO HEALTH INTERNATIONAL
AWARDS RESEARCH GRANT TO UNIVERSITY OF ARKANSAS TEAM
FOR IMMEDIATE RELEASE
ST. LOUIS, Dec.19, 2006 - Post-Polio Health International,
headquartered here, announced that it has awarded a $25,000 research
grant to a team from the University of Arkansas for Medical Sciences
(UAMS), Little Rock. The researchers propose to determine whether
there is a unique signature, or disease biomarker, in the immune
system of individuals with post-polio syndrome (PPS) that would
enable a more definitive diagnosis of PPS.
PPS is a slowly progressive neurodegenerative disease that occurs
many years later in individuals previously affected by paralytic
poliomyelitis due to the poliovirus infection. The causes of PPS are
unknown but it is characterized primarily by new muscle weakness that
negatively affects the quality of life of survivors.
Biomarkers are biological measures found associated with specific
diseases. They are useful because they can assist in disease
diagnosis or provide a means of monitoring disease development and
progression.
The researchers at UAMS recently detected the increased presence of a
distinct immune cell population in the blood of individuals with PPS
but not healthy individuals, although the number of donors examined
was small. The detected cells represent a recently described subtype
of T cells, known as regulatory T cells (Tregs).
The research award from Post-Polio Health International will fund a
small pilot study that will determine whether development of PPS is
associated with increased numbers of Tregs and whether the Tregs
found in individuals with PPS have unusual properties as compared
with those in healthy individuals.
"We are very grateful to PHI for their support of this research.
Although the research is in its very early stages and our initial
results need to be rigorously tested in a much larger group of
individuals with PPS, a biomarker for PPS that can be potentially
measured in an individual's blood should enable a more rapid and more
definitive diagnosis of this debilitating disease." said Principal
Investigator Dr. Rahnuma Wahid, Postdoctoral Research Assistant,
Microbiology and Immunology Department, at the University of Arkansas
for Medical Sciences.
"A definitive diagnosis of PPS is difficult because it is based on
past history, which may be lost or incomplete, or dependent on
recall. The diagnosis is complex and unreliable because many
symptoms of PPS overlap those of other diseases including
osteoarthritis, fibromyalgia, hypothyroidism and a number of
neurological conditions. Because available treatments are limited,
finding a definitive test for PPS would not only help with a
diagnosis but would also help develop potentially more effective
therapies," said Joan L. Headley, executive director of Post-Polio
Health International.
Others on the UAMS team in addition to Dr. Wahid include Dr. Marie
Chow, Professor, Departments of Microbiology and Immunology, and
Pathology and Dr. Katalin Pocsine, Assistant Professor of Neurology.
Post-Polio Health International's Research Fund was established in
1995 to seek scientific information leading to eventual amelioration
of the consequences of poliomyelitis and/or neuromuscular respiratory
diseases. This is the fourth grant to be awarded. Complete reports
on the first three research studies - Ventilator Users' Perspectives
on the Important Elements of Health-Related Quality of Life ; Women
With Polio: Menopause, Late Effects, Life Satisfaction and Emotional
Distress; Timing of Noninvasive Ventilation for Patients with
Amyotrophic Lateral Sclerosis are available on Post-Polio Health
International's website, www.post-polio.org (click on Research).
Post-Polio Health International actively promotes education,
research, advocacy and networking among the post-polio community to
enhance the lives and independence of polio survivors and home
ventilator users.
http://www.post-polio.org/
-----
Subject: Re: Hidden barriers- Wheelchairs
From: Janelaural@AOL.COM
This appeared in the San Francisco Chronicle on Sunday. It gives a
glimpse of what one person who has suffered an injury and is in a
wheelchair temporarily experiences.
(http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2006/11/26/EDGRMLJISL1.DTL)
Jane
-----
Subject: Archive Webcast of Oshinksy Lecture on Polio Now Online
From: Scout <Scout@SKALLY.NET>
The Archive of the Webcast of Dr. David M. Oshinsky's Lecture on
Polio called "race for a cure" is now Online. You must downlaod the
Envivio Plugin to view the webcast, link to the plugin is on the web
page.
http://www.esi.utexas.edu/outreach/ols/lectures/Oshinsky/
"Dr. David Oshinsky, author of the 2006 Pulitzer Prize winning book
Polio: An American Story, will tell the enthralling story of
America's battle with polio, the terror it caused, and the intense
effort to find a cure."
-----
Subject: Book: The Post-Polio Experience
From: Scout <Scout@SKALLY.NET>
The Post-Polio Experience: Psychological Insights and Coping
Strategies for Polio Survivors and Their Families by Margaret E.
Backman, Ph.D.
"Margaret Backman, Ph.D., a Clinical Psychologist in New York City,
has written numerous articles and given presentations on the
psychological aspects of post-polio. She has now published a book
based on her more than 25 years of experience with those who had
polio.
Today many polio survivors find themselves with new symptoms
reminiscent of the earlier days when they first had polio-- these new
symptoms trigger frightening memories that had long been repressed,
along with anxieties about what the future holds.
In The Post-Polio Experience Dr. Backman, examines polio survivors'
psychological reactions to their earlier experiences and to their
current struggles with the late effects of polio. Topics include:
Understanding the early years
Issues of abandonment and anxiety, loss and bereavement
Facing the future
The Polio Personality: Does it exist?
Role changes from the perspective of significant others
The book also includes practical guidelines for survivors on:
Coping with the emotional and interpersonal aspects of PPS
Giving and receiving help, gracefully
Managing stress and depression
Negotiating relationships with family and friends
Developing a positive self-concept
Improving doctor-patient communication
Family and friends will also find the The Post-Polio Experience of
interest. In the book they learn how to deal with the changing roles
that they and the survivor now face and gain insight into their own
needs, which interact and sometimes conflict with the polio
survivor's needs.
Mental health providers, physicians, and other health professionals
gain a better understanding of their patients' psychological
reactions to Post-Polio Syndrome--paving the way for more effective
treatment. An entire chapter is specifically written for physicians
to aid them in their interactions with polio survivors.
The Post-Polio Experience can be purchased through the publisher:
www.iuniverse.com, or 1-800-288-4677, Ext. 501. The book is also
available through Amazon.com, Barnesandnoble.com, and through special
order at Barnes and Noble bookstores. The cost is $18.95, plus
shipping and sales tax, where applicable.
-----
Subject: Exercise and Gain?
From: Eddie Bollenbach <edward.bollenbach@SNET.NET>
I agree with Diana when she says burning within muscle is likely the
result of lactic acid and it's consequent anaerobic (without oxygen)
reactions inside muscle cells. Diana also mentioned that exercise in a
polio patient is all pain and no gain. I've never believed this as it
was counterintuitive to me and I felt that if one rested muscles too
much the same sort of damage polio did in the first place, that is if
the muscle is not completely paralyzed, would continue to occur. I was
37 when PPS struck and I went from a normal looking walking individual
to a wheelchair due to weakness in my back and legs. But I started
swimming (I have no respiratory loss) and now swim competitively in open
water distance swim races. I feel much better then when PPS ruled until
I "scientifically" started moving. I never went beyond a pain point I
thought would come back and bite me and I even discovered other cues
(like a tightening on the side of my lower leg) which told me I was
going to have pain for a few days. Most credentialed knowledgeable
physicians today recommend exercise for PPS patients. I was doing it
before this happened; the stubborn brute I am.
Below you will find a link to a paper in the Journal of Physiology which
took mice and destroyed up to 80% of their spinal cord including areas
of the cord that innervated their forelegs or hindlegs. They allowed one
group to move around freely in their cages (exercise group) and used a
paralyzing agent, Tetradoxin, to completely immobilize (rest) other
partially enervated muscle fibers. Guess what? The rest group produced
many fewer to no synapses (nerve end fibers) from damaged nerve to
muscle and lost more and more connections, while the normal movement
(exercise group) developed increased sprouting and even new axon
regeneration.So entire motor units were replaced. Hmmmmm!!! Other
papers by Cashman, et alia, avulsed (damaged) spinal cord and then
exercised mice to exhaustion every day and found they too lost more end
fibers --- this was stated as experimental proof for the no exercise at
all overuse theory of PPS. It is more complicated than that and this is
good news, not bad. As we find the reason some people get PPS and others
don't we can treat the cause.
http://jp.physoc.org/cgi/content/full/543/2/655
Eddie
-----
Subject: Mayo report
From: HBergan@CS.COM
Hello,
In the December issue of "New
Mobility" magazine, Dr. Bruno gives information on how the Mayo Clinic
research on post-polio was conducted. Quoting the study, headlines all
over the country read, "People who survive polio in childhood will not
suffer further effects later in life." Wouldn't that be nice? There was
no matching non-polio control group as is normally necessary.
Bruno concludes his PPS Forum with this comment, "Polio survivors are
not the sum of their dying motor neurons, that the researchers' methods
are faulty, their logic flawed, their conclusions unfounded." More
details in the January issue in which he
mentions the researches are arging among themselves.
To get the article, go to www.newmobility.com, then click on "Ask an Expert" and
Bruno's PPS Foum should appear. Whether or not you think of
Bruno as a post-polio expert, it is interesting reading.
Helen
-----
Subject: PHI and the Sorenson/Mayo Responses
From: GG Genereau <genereau@vbe.com>
Responses from Post-Polio Health International Medical Advisory
Committee Members
(Drs. Halstead, Silver, and Maynard)
http://www.post-polio.org/ipn/resmedadv.html
-----
Subject: Re: Question Mis-matched shoes
From: Steve's Account <stevel@FERN.COM>
Here's one:
http://www.oddshoe.org/index.php
and Nordstroms has a program that will provide mis-matched pairs if
your size difference is at least some minimum amount.. as I recall
a 1-1/2 size difference&