Post Polio Resource List

 This Additional Resources page contains links to posts on specific subjects,
and recent and/or informative posts of interest. .


Posts of Interest

  Can we do anything to prevent or stop PPS?
  Update on current and emerging treatment options for post-polio syndrome.
  Famous Polio List
  Don't Assume Your Symptoms Are PPS
  Put Your Feet Up!
  3 Types of Polio
  Who Got Polio
  Cold Feet  

Subject    Can we do anything to prevent or stop PPS
From        Edward Bollenbach

The cause of PPS is not completely understood. But there are things we do know. For example, if inflammation is not relevant to the start of PPS it is certainly relevant to the progression of PPS. There is no reason for denervation to continue if one does not over exercise or under exercise except for the presence of inflammatory chemicals, which have been found by numerous researchers. Of which the following is most recent:

Lancet Neurol. 2010 Jun;9(6):561-63.
Postpolio syndrome: unanswered questions regarding cause, course, risk factors, and therapies
Frans Nollet ....

Management of postpolio syndrome
Gonzalez H, Olsson T, Borg K.

Division of Rehabilitation Medicine, Department of Clinical Sciences,
Danderyd Hospital, Karolinska Institute, Stockholm, Sweden.


Cytokines, Tumor necrosis factor alpha, Interleukins, and other nasty actors are all found in the spinal fluid of people with PPS but not in the spinal columns of people without PPS. I would recommend anti-inflammatory chemicals, fish oil, Coenzyme Q10 and other known anti-inflammatory chemicals. Fish oil is probably the most effective non-prescription anti-inflammatory. Watch out taking it if you are anti-coagulated with coumadin. It is possible that inflammatory processes are kicked off in those of us who develop PPS. I think this is a very possible etiology because pockets of dead motor neurons from the original attack may be loaded with polio virus mutants left over. A release of these and subsequent sensitization in a patient may very likely start the ball rolling, so to speak. Over use may or may not be a primary cause but once muscles are weakened over use will make them worse. Under use will decondition below the threshold of muscle capability even though it is weakened. You have to find that balance if you are able to move. Water is an ally in this process.

So there are things one can do to maximize function and take action to improve health and possibly stave off PPS.

Eddie

-----
Subject    Famous Polio List
From        "arojann"

I have finally gotten the Famous Polio Survivors List where I can edit is once again. I set up a blog so it is available for anyone who would like it. There is also a list on Wikipedia, but I have not checked it for accuracy. A few names have been floating around who didn't have polio (like James Arness). I still believe FDR either had Polio or he believed he did, and he did so much on our behalf:

http://polioconnections.blogspot.com/

Comments, additions, etc. welcome. Enjoy!

-----
Subject    Moving message from son of polio veteran
From        PPRG;

 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. Here is his letter:

Hello,

 My name is Gene. My father Henry(Hank), was a life member of the PPRG, and a polio survivor. He passed away [awhile ago], 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

--
Michael Odle
PPRG Internet Coordinator
Together@PPRG.org

http://PPRG.org

-----
Subject    Re-Pain Management in the U.S.
From         Hilary

<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.

Hilary.

-----
Subject     Re (Fwd) 3 types of polio
From         Scout

 There are 3 types of polio virus.

    Type 1 (also known as Brunhilde)
    Type 2(Lansing)
    Type 3 (Leon)

They got their names from the cases in which they were first
isolated.

Type 1 is the type most often isolated from paralytic cases.

type 3 less so and type 2 least commonly.

Type 1 was most often the cause of epidemics. Infection from one type does not necessarily confer protection against the other 2 types hence cases occurred of people having a second attack. All 3 types are included in the vaccine. Most vaccine related cases are type 2 or 3.    -Mary

-----
Subject     3 types of polio
From         Post-Polio Health International <director@POST-POLIO.ORG>

Back in 1992, PHI published "The Three Types of Three Types of Polio" as
explained by physiatrist Dr. Ernie Johnson at The Ohio State University.  It is on page 6 of this newsletter -

http://www.polioplace.org/sites/default/files/files/Polio%20Network%20News%20Vol_%208%20No_%201%20Winter%201992.pdf


Also, here is a link to the types of Wild Polio Viruses showing the most
prevalent today.  It is WPV 1.

  http://www.polioeradication.org/Dataandmonitoring/Poliothisweek.aspx

-----
Subject:    RE: Who got polio.
From:       Mike

 I will tell you how to figure it.  I am a Microbiologist and a polio survivor.  I have been researching polio for over 25 years, and speak to support groups all over the country.

Here's the story. The polioviruses, I, 2, or all three of them had to attach to receptor sites on the nerve cells before they could do damage. Not everyone had these sites, or everyone might have gotten polio. You get these receptors through genetics. You inherit them from one or both parents.  Not all the children in the same family had these receptor sites, so even if all brothers and sisters, or your friends, were in contact with the polioviruses, only the ones that had these receptor sites on the motor nerve cells became infected.  It had nothing to do with one being stronger, older, healthier, or bigger than the other. Even in the case of twins, identical twins would have inherited the sites, but n non-identical twins, one might have inherited it, and the other might not.

Mike

-----
Subject:    Article on cold "polio feet"
From:        Gail

Article by Dr. Bruno re: cold "polio feet"

  http://www.upnaway.com/~poliowa/Blue%20Feet.html

I will continue to look for others. There are several medical opinions on "polio feet".

Gail in WI

-----