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Subject: Computerized Assessment of Cognitive Fatigue in Survivors of Paralytic Poliomyelitis
From: Scout <Scout@SKALLY.NET>

[ of note.. Dr. Vasconcelos, the senior study author published a
study done with Dr. Halstead and others not too long titled:
Modafinil for treatment of fatigue in post-polio syndrome: a
randomized controlled trial

DG News - USA
By Jacquelyn Beals WASHINGTON, DC -- October 11, 2007 --

http://tinyurl.com/27n7dt

[ From a presentation at the American Neurological Association (ANA)
132nd Annual Meeting held Oct. 7-10, 2007,  in Washington DC
Presentation title: Computerized Assessment of Cognitive Fatigue in
Survivors of Paralytic Poliomyelitis. Abstract M-113]

excerpt:

The results indicate that, while post-polio subjects do not have
diminished mental function when they are well rested, they experience
a "precipitous decline in mental function" after even moderate mental
fatigue. Further studies with age-matched normal controls are needed
to clarify the causes of the increased reaction time.

----- 
Subject: New study for Ambien I have known this for years. I think clear
on Ambien
From: Daniel <dan_32312@yahoo.com>

Insomnia Drug Can Improve Brain Function


Caroline Cassels
Information from Industry
Assess clinically focused product information on Medscape.
Click Here for Product Infosites -- Information from Industry.


March 13, 2007  A new study reports that the insomnia drug zolpidem
(Ambien, Sanofi Aventis) temporarily improved brain function in an
adult patient with akinetic mutism caused by anoxia.

The 48-year-old woman suffered akinetic mutism related to a
postanoxic encephalopathy a few days after a suicide attempt by
hanging.

Two years later, she was prescribed zolpidem to treat a bout of
insomnia. Within 20 minutes of receiving a 10-mg dose of the drug,
the subject, who had been unable to speak or walk and was fed by a
gastrostomy, was able to communicate, walk, and eat without
assistance. These effects lasted for up to 3 hours.

"This phenomenon was so reproducible that caregivers used to give her
up to 3 tablets each day without sleepiness as a 'side effect,' " the
authors note.

The study is published online March 13, 2007 in Annals of Neurology.

Motor Performance Markedly Improved

To evaluate the drug's efficacy on motor and cognitive function and
explore its effect on brain activity, researchers, led by Christine
Brefel-Courbon, MD, from the University Hospital in Toulouse, France,
conducted a crossover trial in the 48-year-old patient that was
randomized, placebo controlled, and double-blind.

The schedule consisted of 6 modules of either drug or placebo
separated by an interval of 24 hours. During each module, the patient
received 20 mg of zolpidem or placebo through her gastrostomy
catheter.

In the first 2 modules  1 with placebo and 1 with zolpidem =97 a
blinded clinician administered motor and language tests at baseline
and 30 minutes after drug administration.

In the final 4 modules, the patient underwent 2 brain-imaging
studies, a brain metabolism measurement using the 18-
fluorodeoxyglucose positron emission tomography (FDG-PET) method and
a cognitive activation study using the H215O PET method.

According to the authors, zolpidem markedly improved motor
performance, enabling the patient to stand up and to walk. At
baseline and after placebo, a complete mutism coexisted with relative
sparing of auditory and visual comprehension for single words.

Although spontaneous language remained absent after receiving
zolpidem, the patient was able to repeat single words and sentences
aloud, read words, and name and/or repeat the names of objects.

Utility of Single-Patient Studies

Baseline findings on FDG-PET imaging showed a decrease of brain
metabolism in large, bilateral rostral/subcortical territories,
especially in the medial and lateral frontal cortex and thalamic
areas.

However, after zolpidem therapy, cerebral metabolism increased in the
postrolandic territories by 30% (and limited portions of the lateral
frontal cortex) and, to a lesser extent, in anterior cingulate,
medial, and orbitofrontal cortices and thalami (by 25%), the authors
report.

During the H215O PET session performed under placebo, the naming task
did not induce any significant change in regional cerebral blood flow
(rCBF), and patient performance was poor.

In contrast, with zolpidem therapy, there was a similar improvement
in the patient's naming/repetition performance. An rCBF image
analysis showed a drug-induced activation mainly localized in the
anterior cingulate and orbitofrontal cortices.

Although previous studies have shown the positive effect of zolpidem
on catatonic conditions, the authors state that "to our knowledge
this is the first study assessing the impact of zolpidem on
postanoxic brain injury using modern standards of clinical
pharmacology."

The authors also note that single-patient drug trials such as this
can provide a way to identify uses for drugs, especially in the case
of rare or orphan diseases.

Ann Neurol. Published online March 13, 2007.

-----
Subject: Re: [PPM] Poliovirus replication and spread in primary neuron
 cultures???Eddie?
From: Eddie Bollenbach <edward.bollenbach@SNET.NET>

Suzanne wrote:

            You're Welcome.
Do you suggest a possible therapy involving the removal or blockage of
cytokines?  Can you elaborate on how that might be accomplished and
how it might work?

 I was doing some research on immunoglobulin and it appears there are
many different types including non-intravenous.  Do we know what type
of immunoglobulin they are using in these trials?

   From: Eddie Bollenbach <edward.bollenbach@SNET.NET>

I happen to believe that PPS is immune activated and also sustained by
immune activity against damaged neurons of the central nervous system.
There is a lot of evidence for this. It has also been known for a long
time that immune and autoimmune problems often follow a viral infection.
We shall soon.see for polio. In our survey work we found a subgroup of
polio survivors who had the onset of PPS clearly associated with
physical or emotional stress. For example, as on this list recently,
many people said they fell or broke a limb, or that they had a death in
the family which served as a trigger for the start of PPS. This has been
reported for years and may have even been reported by the early Red
March of Dimes book on PPS edited by Halstead and Weichers in the early
1980's,

What we found further about this phenomenon, which is new, is that those
who had their PPS begin with an event also had several other things in
common with each other about their disease. For example, this group
clearly had more fatigue and a more aggressive form of PPS. They
generally have a course that involves progression of weakness and then
periods of leveling off of their downward spiral. These individuals
also, when compared to the other group that had PPS not associated with
an event,  tended to have periods of illness, when they overdid or had,
as we called it, polio crashes,  where they felt generally ill as if
they caught a bug.  People who developed PPS without an associated event
tended to have a more uniform slow progression of weakness.

So in summary, there is a subgroup of people with PPS who report its
first appearance coincided with a stressful event or injury.
These individuals in that subgroup seem to have a different progression
sequence and often feel ill as if they have a mild flu when they
overdue. In our opinion these differences are due to more
immune/autoimmune events within the spinal cord.

Eddie

-----
Subject: Re: Autoimmune component
   From: Eddie Bollenbach <edward.bollenbach@SNET.NET>

Suzanne wrote:

>>
>> I happen to believe that PPS is immune activated and also sustained

by immune activity against damaged neurons of the central nervous
system. There is a lot of evidence for this. It has also been known for
a long time that immune and autoimmune problems often follow a viral
infection.

>
>
> My question is, if pps is immune activated what kinds of treatments
> might be possible?
>
Hi Suzanne:

The one that is receiving a lot of attention right now is intravenous
immunoglobin. One session every few weeks seems to reduce the
inflammatory biochemicals in the spinal cord of PPS patients to normal.
Measured now they are of the same magnitude as those in an MS patient. I
think, if the reduction in inflammatory chemicals can add some
resiliency to motor neurons under immune attack we may be able to
improve strength and lessen fatigue levels both Central and Local. There
is also the possibility of anti inflammatory drugs that target the
particular cytokines present in the cord for PPS. Ibuprofen and
indomethecin seem both to target Tumor Necrosis Factor which seems to be
there now. We know that from an understanding of the NSAIDS but there is
no evidence that Ibuprofen or indomethecin can brighten the picture for
PPS. I'm sure either the IVig or some other new anti-inflammatory could
be a help.

Eddie

-----
Subject: Re: Accident then PPS
   From: Eddie Bollenbach <edward.bollenbach@SNET.NET>

Sandra Parsons wrote:

>
> Eddie - I was very interested in your piece linking the onset of PPS

with > physical and emotional stress linked with an auto immune
response.  You described my symptoms perfectly.  I have these crashes
and 'flu-like' symptoms.  I wonder if there is a link or a contact you
can give me so that I can read up on the research you mentioned.

> ========================================
 

Try these pointers and references. You will have to get them at a
medical library or search medline for the abstracts:

Read these excerpts from the Karolinska Institute. They may peak your
interest in reading the entire page at:

http://www.phs.ki.se/rehab/news/index_en.html
 

  Promising anti-inflammatory treatment for post-polio syndrome

Patients with post-polio syndrome are shown to have significantly higher
levels of cytokines TNF-a, IFN-g and IL-10 in CFS, compared to a control
group. The values are at the same level as in patients with multiple
sclerosis (MS), which is known to be a CNS inflammatory disease.
Trials are going on now.  There are also several papers on the topic of
inflammation within the cord causing PPS mentioned below are a few.
Read this page too:

http://www.phs.ki.se/rehab/research/postpolio_syndrome.htm

Further References:

1. Dalakas, Pro-inflammatory cytokines and motor neuron dysfunction: is
there a connection in post-polio syndrome? J Neurolog Sci. 205:5-8, 2002

2. Gonzalez et al. Prior poliomyelitis-IvIg treatment reduces
proinflammatory cytokine production. J Neuroimmunol. 150:139-144, 2004.

3. Patarca, R. Cytokines and chronic fatigue syndrome. Ann NY Acad Sci.
933:185-200, 2001.

4. Black, PH. Stress and the inflammatory response: a review of
neurogenic inflammation. Brain, Behavior and Immunity 16:622-653, 2002.

5. Farbu et al. Intravenous immunoglobulin in postpolio syndrome.
Tidsskr Nor Laegeforen. 124:2357-2358, 2004.

6. Gonzalez et al. study in progress. (My Comments: A reference to an
ongoing double blind multi-center placebo controlled study designed to
stabilize the immune system of people with PPS is reported at Karolinska
shows preliminarily (not published yet) to support an ongoing
persistent poliovirus infection . Hopefully, results will be published
soon.

   From: "kindhelper2004" <kindhelper2004@yahoo.com>

For those who weren't able to see the video on Milwaukee Public
Television, it is available by calling 800-496-3198. or go to
http://www.kera.org

The video is one hour long and was made in Texas in 2002. The cost
is $19.95 plus $4.00 shipping and handling.

It is a good overview and history of the polio epidemic. There
weren't as many personal stories as I would have hoped, but the ones
they had were very meaningful. There were a lot of old film segments
of iron lungs. Lots about Sister Kenny, FDR, and Doctors Salk and
Sabin, and some older film stars and celebrities. There was only a
brief mention about post-polio. On the whole, the video was very
upbeat and encouraging and honoring of polio survivors. I am not
Ebert and Ropert, but I would give it one thumb up!

----- 
Subject: Re: men vrs women and pps a interesting article
From: The Old Hobo <hobostick@comcast.net>
     ANN ARBOR, MI - Most Americans think of polio as a thing of the past. Although the disease has largely been eradicated, about one million Americans are polio survivors. For these men and women who contracted the disease through epidemics of the 1930s, 1940s and 1950s, many are experiencing the late effects of their struggle with polio. The University of Michigan's Post-Polio Clinic is studying the way age and gender are effecting this population.

      "Polio survivors are definitely an under-served population," asserts Sunny Roller, a polio survivor.

      Roller contracted polio in the early 1950s when she was four, spending nine months in the hospital recovering from the initial phase of the disease, which included extreme paralysis.

      "I went through rehabilitation until I was 18 years old. I had to learn to walk all over again and do as many things as I could for myself," she remembers. "I worked really hard. It almost killed me, but I learned how to come back from that disease."

      Roller did 'come back,' but in middle age began experiencing new symptoms of pain, fatigue and weakness. Of the people who contracted polio in the United States from the 1930s on, approximately 40 percent of those still living had paralytic polio like Roller. These are the survivors at higher risk for developing late-effect problems, or post-polio syndrome (PPS).

      According to Ann Laidlaw, M.D., a physical medicine and rehabilitation specialist at the U-M Health System, to some degree, researchers don't know what's going to happen to polio survivors as they age. This is why there is increasing focus on understanding the process and, consequently, developing the best forms of treatment.

      "It is still not clear how many survivors might show the effects of PPS. Depending on the study, it ranges from 25 percent of survivors up to 75 percent," says Laidlaw.

      The extent to which polio survivors will suffer from PPS depends on how seriously they were affected by the original polio attack. Patients who had only minimal symptoms from the original attack and subsequently develop PPS will most likely experience only mild PPS symptoms. People originally hit hard by the polio virus, and left with severe residual weakness, may develop a more severe case of PPS. Those who experienced paralytic polio are most susceptible to severe PPS.

      Claire Kalpakjian, Ph.D., believes there may be gender differences in how post-polio syndrome affects men and women. Currently she and other experts are conducting a study looking at the impact of menopause on women who are polio survivors, as well as the differences between men and women who experience the syndrome.

      "One of the reasons we want to study this is because there are so many changes that go on in a woman's body. One of our particular concerns is osteoporosis for women with disabilities who may not be as physically active. Women who aren't strengthening their bones by exercise or even walking are at higher risk for developing osteoporosis, and that risk increases as they enter menopause. If you factor in post-polio syndrome, these woman will likely have many special needs," Kalpakjian says.

      Patients are seeing the benefit of this expanding scientific knowledge. Roller, who is 55, remembers her first experience with PPS and her attempts to find answers. Almost ten years ago, she started going through the gradual stages of menopause, but also the late effects of polio. Over several years, Roller went to five different physicians looking unsuccessfully for answers about the new, debilitating pains she was experiencing, and solutions for how to deal with PPS. Currently, she is a patient at the U-M Post-Polio Clinic.

      "I feel I have more control of my situation now. At least we know a little bit more about what to expect and we know help is there. And, I've helped the medical community learn more about managing, alleviating and even sometimes preventing the late effects of polio," she says.

      This study is funded by the International Polio Network.

      To find out about research taking place at the University of Michigan Health System call 734-936-7052.

      Facts about polio:

        a.. Polio is a virus that has been eradicated with a vaccine introduced in the mid 1950s.

        b.. The virus was attracted to the neurons in the spinal cord and brain stem.

        c.. Symptoms included headache, neck ache, fever, muscle soreness and weakness and, occasionally muscle paralysis and difficulty breathing.

        d.. Nearly 2 million Americans were affected by polio in the 1930s, 1940s and 1950s.

        e.. Polio is largely eradicated in countries like the United States, where the polio vaccine is widely available. However, polio can still be found in under-developed regions of the world and among children adopted from these areas.
      Facts about post-polio syndrome:

        a.. Post-polio syndrome occurs about 20 years after the initial onset of polio. Those who experienced paralytic polio are more susceptible to post-polio syndrome.

        b.. Symptoms include muscle fatigue, muscle atrophy, joint pain, difficulty sleeping or swallowing, and weakness in the limb that was affected by polio, and occasionally in a limb that was thought to be unaffected by polio.

        c.. Health professionals are still learning about post-polio syndrome and how it affects people, in order to help guide the development of treatment and to focus on the most significant symptoms.

        d.. The U-M Post Polio Clinic addresses the needs of those who once had polio, including assessment, physical rehabilitation and education.
      For more information, visit the following Web sites:

      U-M Post-Polio Clinic
      www.med.umich.edu/pmr/clinical.htm#polio

      MEDLINEplus: Polio and Post-Polio Syndrome
      www.nlm.nih.gov/medlineplus/polioandpostpoliosyndrome.html

      Learn more about U-M's role in the history of polio prevention and treatment
      http://www.med.umich.edu/medschool/chm/polioexhibit/index.htm

      National Institute of Neurological Disorders and Stroke: Post-Polio Syndrome Fact Sheet
      www.ninds.nih.gov/health_and_medical/pubs/post-polio.htm

      International Polio Network: Polio and Post-Polio Fact Sheet
      www.post-polio.org/ipn/fact.html

      International Polio Network: Information about the Late Effects of Polio
      www.post-polio.org/ipn/aboutlep.html

      Written by Mary Beth Reilly




       ERecent Press Releases



The Old Hobo

-----
Subject: 50TH Anniversary Articles about Polio Vaccine
   From: Carl Cortez <ccortez@sw.rr.com>

Hello Everyone,

If you do feel like reading, here are many articles which have been out
in the last few days.  The third one can be watched on RealPlayer.

Good Readings,
Carl
 

Polio Vaccine - 50th Anniversary
Broadcast Monday 24 March 2003
with Norman Swan
http://www.abc.net.au/rn/talks/8.30/helthrpt/stories/s815749.htm

Fifty years of polio vaccine
26 March 2003
with Norman Swan
http://www.abc.net.au/health/minutes/stories/s816475.htm

Kathleen Murray gives history of the Salk Institute. 2004 will mark the
50th anniversary of the introduction of the Salk Polio vaccine...WATCH
IT ON REALPLAYER:
http://www.ucsd.tv/library-popup.asp?showID=7378

"A Fight to the Finish: Stories of Polio"
premieres nationally on public television in April,
coincides with 50th anniversary of polio vaccinations
Critically acclaimed documentary chronicles a terrifying,
yet triumphant chapter in American medicine
http://www.kera.org/media/polio/main.lasso

The Jonas Salk Trust
http://dot-polio-50.org-247777.namezero.com/thejonassalktrust/

--
Carl Cortez
PPSR - Post Polio Syndrome Resources:  http://ppsr.com
Doctors, Hospitals, Clinics, Support Groups:
http://ppsr.com/infolocator.html
InfoPolio Message Board:  http://groups.yahoo.com/group/infopolio
Email: Mailto:ccortez@sw.rr.com

-----
Subject:  Exhibit: Every Mother's Fear: Alberta's Polio Experience
   From:  Scout <Scout@SKALLY.NET>

The Provincial Museum of Alberta 12845-102 Avenue, Edmonton, Alberta Exhibit

Every Mother's Fear: Alberta's Polio Experience (February 7 to September 12 2004)

"This fourth installment in the Spotlight Gallery series commemorates the 50th anniversary of Alberta's worst polio outbreak. Learn about Alberta's history with the Salk vaccine trials and experience the stories of polio survivors. "

There is a PDF file on site telling more about the exhibition

http://www.pma.edmonton.ab.ca/gallery/temp/info.htm#polio

-----
Subject: US Polio Epidemics of the '50s
   From: Larry Kohout <lkohout@MN.RR.COM>

There has been a lot of talk about the polio epidemics and what was the greatest.  Also talk about who got polio when and in relation to when the vaccine became available.  Doctor Salk orchestrated the field trials of his vaccine in 1954.  On April 12th, 1955 (10 years to the day after Roosevelt died) Dr. Francis announced the results of those tests, stating that the vaccine was safe and effective.  Basil O'Connor had taken a gamble on the effectiveness and spent $5,000,000 of the March of Dimes money on manufacturing vaccine ahead of the announcement.

Once the announcement was made O'Connor immediately made the vaccine available to the nations doctors and they started mass inoculations. Even so, as can be seen in the following statistics, polio continued to be a problem for some time.  The year 1952 was greatest only in that it was the year with the highest number of recorded cases here in the US.  As for me, I belong to that little class of 1953.

Year    No. of Cases
1950    33,300
1951    28,386
1952    57,829
1953    35,592
1954    38,476
1955    28,985
1956    15,140
1957    5,485
1958    5,787
1959    8,425
1960    3,190

For what it is worth,

Larry (from the land of loons)

----- 
Subject: Pyridostigmine (Mestinon) in postpolio syndrome:
    From: Scout <scout@SKALLY.NET>

 J Neurol Neurosurg Psychiatry. 2003 Dec;74(12):1655-1661.

 Pyridostigmine in postpolio syndrome: no decline in fatigue and limited functional improvement.

 Horemans HL, Nollet F, Beelen A, Drost G, Stegeman DF, Zwarts MJ,
Bussmann JB, De Visser M, Lankhorst GJ.

 Department of Rehabilitation Medicine, VU University Medical Centre,
Amsterdam, Netherlands. Department of Clinical Neurophysiology,
University Medical Centre Nijmegen, Netherlands. Department of
Rehabilitation Medicine, Erasmus MC, University Medical Centre
Rotterdam, Netherlands. Department of Neurology, Academic Medical
Centre, University of Amsterdam, Netherlands.

 OBJECTIVES: To investigate the effect of pyridostigmine on fatigue,
physical performance, and muscle function in subjects with
postpoliomyelitis syndrome.

 METHODS: 67 subjects with increased fatigue and new weakness in one
quadriceps muscle showing neuromuscular transmission defects, were
included in a randomised, double blind, placebo controlled trial of 60
mg  pyridostigmine four times a day for 14 weeks. Primary outcome was
fatigue  (on the "energy" category of the Nottingham health profile).
Secondary  outcomes included two minute walking distance and quadriceps
strength  and jitter. Motor unit size of the quadriceps was studied as a
potential effect  modifier. The primary data analysis compared the
changes from baseline in  the outcomes in the last week of treatment
between groups.

 RESULTS: 31 subjects treated with pyridostigmine and 31 subjects
treated  with placebo completed the trial. No significant effect of
pyridostigmine  was found on fatigue. The walking distance improved more
in the  pyridostigmine group than in the placebo group (by 7.2 m (6.0%);
p<0.01).  Subgroup analysis showed that a significant improvement in
walking  performance was only found in subjects with normal sized motor
units.  Quadriceps strength improved more in the pyridostigmine group
than in the  placebo group (by 6.7 Nm (7.2%); p = 0.15). No effect of
pyridostigmine  was found on jitter.

 CONCLUSIONS: Pyridostigmine in the prescribed dose did not reduce
fatigue in subjects with postpoliomyelitis syndrome. However, it may
have a  limited beneficial effect on physical performance, especially in
subjects with  neuromuscular transmission defects in normal sized motor
units.

 PMID: 14638885 [PubMed - as supplied by publisher]

   ...Cleo  scout@skally.net

   From: Scout <scout@SKALLY.NET>

> My PPS doctor just suggested 5 grams morning and night to maintain
> muscle fiber and give me more energy. I thought I read there was some
> research studies on this for people with PPS - maybe Dr. Jacqueline
> Perry for one.

Barbara.. you can find two studies on the use of creatine for those with
neuromuscular disease by doing a search for creatine on PPS Central
http://www.skally.net/ppsc/search.html

I've found no studies regarding Polio survivors with PPS using
creatine.. quite a few showing questionable diagnostic abilities in
using creatine levels to diagnose PPS or level of PPS and that's about
it.

be very careful with this stuff and read up on the possible problems...
files like

http://www.healthandage.com/html/res/com/ConsSupplements/Warnings/Creatinecs.html

need to be read and understood so YOU can evalute the risks vs possible
benefits according to your own individual health, conditions and
medications you take.

  ...Cleo  scout@skally.net

-----
Subject: New Book - "Postpolio Syndrome"
   From: rawrew@WVADVENTURES.NET

I received this letter from Dr. Julie Silver and thought that if there are any Post Polio Support Group Leaders within these two groups that I am Forwarding this email to, you may want to contact Dr. Silvers either by email or by phone and see if you could request a copy of this book for your support group......

Please read the contents of this e-mail and if interested, contact her department......

I can not get you a copy, it has to be you.

Becky White, President
Mid Ohio Valley Post Polio Support Group
West Virginia

----- Original Message -----
From: "Silver, Julie K.,M.D." <JSILVER@PARTNERS.ORG>
To: <rawrew@wvadventures.net>
Sent: Monday, August 25, 2003 1:51 PM
Subject: PPS

> August 25, 2003
>
> Dear Becky,

 One of the things I have heard time and again from polio surivors is that their  doctors and therapists do not understand Post-Polio Syndrome.  This is  distressing and needs to change.  There are a number of things that we can do to  help educate healthcare providers by providing them with interesting and  up-to-date information on the medical needs of polio survivors.

 Which is why when my colleague and fellow polio doctor, Anne Gawne,  approached me about editing a book together that would be written for doctors  and therapists, I readily agreed.  Dr. Gawne and I worked hard on this book and  invited many of the top people in polio healthcare to collaborate with us. This  book, Postpolio Syndrome (Hanley & Belfus, 2004) just came out, and I would  greatly appreciate it if you would
help us get the word out that this book is now available.

 The publisher has kindly agreed to send you a complimentary copy of the  book if you are willing to review it in your newsletter and/or post information  on your website.  Some of the information you may want to mention includes:

 *Just released and the most-up-to-date book currently available
 *Written for healthcare providers who need to be educated about polio issues
 *Extremely useful information for polio survivors despite some medical terminology
 *Written by many of the top polio doctors and therapists in the world
 *This is a great holiday gift for your doctor or therapist
 *This is a terrific holiday gift for a loved one who is struggling with PPS

 Sadly, Dr. Gawne died very suddenly from a heart attack while we were in the  middle of putting this book together.  She was in her forties and left behind a  husband and two school-age children.  I finished this book with the help of my  colleagues who wrote chapters, and now I am working to make sure that our shared  goal of helping to educate healthcare providers and polio surivors about the  late effects of polio is realized.  I would greatly appreciate your help in this  mission.
Please let me know if you are interested in receiving a complimentary  copy of the book to review.  You can respond to this e-mail or call my office at  the number listed below.  Please be sure and let me know to what address you  would like the book sent.  Thank-you for all that you do to help polio surivors.

 Sincerely,

 Julie K. Silver, MD

 Assistant Professor
 Harvard Medical School
 Department of PM&R

 Medical Director
 Spaulding Framingham Outpatient Center

 Director
 International Rehabilitation Center for Polio

 570 Worcester Road
 Framingham, MA  01702
 508-872-2200 (ext 241)
 e-mail: jsilver@partners.org

----- 

Subject: Our Collective Brains
   From: Eddie <edward.bollenbach@SNET.NET>

^ Jill points out, correctly, about the plasticity of the brain after
injury. I saw a PBS show a while back about a kid who had an entire
brain hemisphere removed, yet he seemed to function adequately to the
amazement of his physicians. The brain is still, to a large extent, a
mystery. In addition to plasticity though, the brain is loaded with stem
cells which begin a process of neurogenesis, vigorously and effectively
in particular areas after injury, and not so vigorously in other areas.
The following quote is taken from The Neuroscientist, Vol. 9, No. 4,
261-272 (2003): "Neural precursors generate neurons throughout life in
the mammalian^ fore*brain* subventricular zone (SVZ)-olfactory bulb
pathway and^ hippocampal dentate gyrus. Accumulating evidence indicates
that^ various *brain* insults increase *neurogenesis* in these
persistent germinative zones". So, in addition to plasticity we do have
neurogenesis to a considerable extent in some places. In other areas the
problem of renewing tissue isn't so much that neurogenesis doesn't occur
as much as inflammation and "faulty cells" begin to populate the wound
resulting in scaring and other abberations. Further, in the
sub-ventricular forebrain area " neural precursors migrate to regions of
focal or^ global ischemic injury and appear to form appropriate
neuronal^ subtypes to replace damaged neurons."

The substantive question for us here is whether all survivors of
paralytic polio have significant injury to the brain? Does central
fatigue, which occurs in polio but which occurs in many other diseases,
result from specific lesions in the brain, and how important is the
brain in the symptomatology of Post-Polio-Syndrome? After reading
extensively, publishing, and lecturing I can honestly say I don't know.
There is a problem, though, that has to be addressed: Why, when
peripheral skeletal musculature begins to fail, in only about 40% of
people with the stigmata of paralytic polio, do many people also report
cognitive problems seemingly with brain function, from word finding
(when we try to write eloquently we find we must use the "ugly sisters"
of the words we may have wanted to use"). There is a New York Times
article on memory loss with aging on its site, the woman writing the
article seemed much worse in this regard than me but after neurological
and psychological tests was deemed to be functioning normally.

I've tried to turn this phenomenon over in my mind. Is it aging, stress,
pain, fatigue, or a direct problem with the brain. If it is a direct
problem with the brain why in the world would it raise its head exactly
when muscle extremity difficulties appear even though the brain tissues
involved are composed of different cells, nurtured by more glia, and are
often unremarkable when examined on autopsy. If there is a focus of
cognitive difficulties I have come to think that the only thing that
would explain this is if the inflammatory theory of the origin of PPS is
true. That way, in the intrathecal space of the spinal cord, where the
spinal fluid circulates, we would find Tumor Necrosis Factor, several
interferons, and other inflammatory cytokines which would affect the
entire Central Nervous System.

Hopefully, early in 2005 will come the paper that I am waiting for with
baited breath, about the use of immunoglobulin to mitigate the symptoms
of PPS. If my thoughts are on track the mental symptoms some of us
suffer should respond to this treatment as well as the fatigue and new
weakness in our bodies. Let's hope. This happy development will not only
take us outside the brain when looking for therapies for PPS, but will
begin the process of directing our efforts in a more fruitful direction
toward alleviating all of our symptoms. Although I am old enough to know
Murphy is often loitering in the wings waiting to educate us about his law.

Eddie

   From: "GG Genereau" <genereau@vbe.com>

>From Chris Rutty on the Polio History List:
I thought members of this group might be interested in this story  that appeared on the BBC website yesterday. Just click on the link,

 http://news.bbc.co.uk/1/hi/health/3182096.stm

** 'My life with an iron lung' **
John Prestwich, paralysed from the chin down, is 64 - and holds the dubious distinction of being the longest surviving beneficiary of iron lung technology in the UK

----- 
Subject: International Post-Polio Task Force
   From: cmareb@aol.com

International Post-Polio Task Force
at the International Centre for Post-Polio Education and Research
Englewood Hospital and Medical Center

PostPolioInfo@aol.com
http://www.postpolioinfo.com/postpolio/

SOCIAL SECURITY ADMINISTRATION RELEASES DISABILITY RULING FOR POST-POLIO SEQUELAE.

Polio survivors win five year battle with the Social Security Administration.
 

The new Social Security Ruling for Post-Polio Sequelae was released on July 2, 2003 by Social Security Commissioner Jo Anne Barnhart.  "This is what we've been working for since 1998," said Dr. Richard Bruno, the architect and driving force behind the Social Security Ruling.  Bruno is Chairperson of the International Post-Polio Task Force and Director of the International Centre for Post-Polio Education and Research and The Post-Polio Institute at New Jersey's Englewood Hospital and Medical Center.

In 1985 Bruno co-wrote the POMS for “The Late Effects of Poliomyelitis," the original Social Security Administration guideline that made it possible for polio survivors to receive Social Security Disability Income (SSDI).  However, Bruno discovered in 1987 that the POMS had been shelved.  He traveled to Capitol Hill to lobby for its release and, through the intervention of New Jersey Senator Bill Bradley, the POMS was released in August, 1987, allowing polio survivors for the first time to be eligible for SSDI.

In spite of the POMS release untold numbers of polio survivors have been denied SSDI.  "Social Security officials, from adjudicators at local offices to disability determination doctors and officials at the state level -- even the SSA Appeals Council in Baltimore -- either didn't know that the POMS existed or didn't follow its guidelines," said Bruno.  The POMS also did not include research on PPS done after 1985, especially the finding that brain fatigue, and not muscle weakness, was the leading cause of work disability.

In 1998 these issues were brought to New Jersey Congressman Steve Rothman.  Over the next five years Rothman wrote to SSA officials asking that denials be reviewed, that the POMS include the latest information on PPS and that all SSA officials be trained about PPS and be required to follow the POMS.  In March, 2001 the Social Security Commissioner agreed to all of Bruno's and Rothman's requests.  In spite of this agreement it has taken constant pressure from Congressman Rothman, and in the past months from Pennsylvania Congressman Don Sherwood, to push the Social Security Administration to finish writing and to release the Ruling.

"The Social Security Ruling replaces the POMS for the Late Effects of Poliomyelitis (24580.010), in that it is 'binding on all employees of the Social Security Administration and relied upon as precedent in adjudicating cases,'" said Bruno, quoting the Ruling.    The Ruling defines postpolio sequelae as "the documented residuals of acute polioencephalomyelitis, caused by one of three types of polioviruses affecting the brain and spinal cord.  No matter which neurons are attacked by the virus, the severity of any residual deficit depends upon how many cells within a specific area are destroyed.  Even though some polio survivors may have had previously undetected motor residuals following the acute polio infection (so-called "non-paralytic" polio), they may still report postpolio sequelae later in life."

"The Ruling is more inclusive than the POMS and uses 'Postpolio Sequelae' to describe all of the late-onset symptoms polio survivors experience," said Bruno, "not only the 'post-polio syndrome' -- new muscle weakness in those who had paralytic polio -- but also 'early advanced degenerative arthritis, sleep disorders, respiratory insufficiency, and a variety of mental disorders (having) an etiological link to either the acute polio infection or to chronic deficits resulting from the acute infection."  According to the Ruling "any one or a combination of these disorders...will constitute the presence of 'postpolio sequelae'" and can be grounds for granting SSDI.

The Ruling is based on research since 1987 done by Bruno and his team at The Post-Polio Institute and The International Centre for Post-Polio Education and Research.  "The Ruling highlights our findings of the significant effects of polio on the brain," said Bruno. "For the first time sleep disorders, 'problems with attention, reduced concentration capacity, inability to persist in tasks, or memory problems' are recognized as causes of disability," said Bruno.Â

The Ruling also incorporates research from The Post-Polio Institute regarding the psychological effects of polio and PPS, saying that "traumatic psychological experiences associated with acute polio infection are revived when polio survivors recognize the onset of further weakness and functional loss.  Many polio survivors endured a life-threatening infection as young children. They may have spent extended periods away from their homes and families while hospitalized with paralysis or respiratory dysfunction, or while undergoing multiple
orthopedic surgeries. Often they endured many months, or sometimes years, of hospitalization and rehabilitation. The psychological effect of perceiving the onset of further weakness, fatigue, respiratory dysfunction or joint pain, many years following the acute infection, can be significant" and lead to disabling "anxiety and depression...mood changes and social withdrawal."  Any of these symptoms can be the cause of inability to work and grounds for granting SSDI.

The Ruling also recognizes that "many individuals with medically severe polio residuals have worked despite their  limitations"  The Ruling states that 'the new onset of further physical or mental impairments (even though they may appear to be relatively minor) in polio survivors may result in further functional problems that can limit or prevent their ability to continue work activity. Postpolio sequelae may effectively alter the ability of these individuals to continue functioning at the same level they maintained for years following
their initial polio infection."

The Ruling states that polio survivors' history of symptoms and limitations documented by their own physicians and psychologists are the primiry factors when it comes to diagnosing PPS and determining inability to work.  "The EMG and functional capacity evaluations have been removed from the evaluation process for PPS, "said Bruno.  "Also, the Ruling makes clear that "Consultative Examinations"-- polio survivors being required to go to a doctor appointed by Social Security to make the PPS diagnosis -- are only to be used if the polio survivor's own physician and psychologist cannot answer questions about the patient's condition." The Ruling states that only in "select cases, where severity of the impairment is unclear, an examination by a physician or psychologist who is knowledgeable about polio and postpolio sequelae is appropriate, if such a specialist is available."  "Polio survivors' doctors must write a report to SSA describing the patient's PPS symptoms and the work impairments they cause," said Bruno. "Written case notes or even a typed history and physical are not sufficient.  "The doctors' reports to SSA must include "the severity of any residual weakness, as well as the onset, pattern, and severity of any new physical or mental deficits," using the wording in the Ruling.  A description of current functional limitations and restrictions on physical and mental activity' must also be included.

Even with the new Ruling there remains the problem of Social Security personnel -- local and state adjudicators, disability doctors and Administrative Law Judges  -- not knowing that the Ruling exists.  "Since 1987 polio survivors' SSDI denials were not due as much to a failure of the POMS to describe disability caused by PPS, but more to SSA personnel not knowing that the POMS existed or not following the POMS guidelines," said Bruno.  Bruno is working with the Social Security Office of Medical Policy to insure distribution of the Ruling to all SSA personnel, to create an Interactive Video Training program about Post-Polio Sequelae and the Ruling, a quality assurance program for compliance and a mechanism to monitor the adjudication of cases in real-time to prevent continued erroneous initial denials.  Bruno is also working to identify an ombudsman in each state SSA office to facilitate education within SSA, expedite adjudication, prevent unnecessary consultative examinations and inappropriate denials, and underscore the importance of adjudicators, DDS doctors and ALJs all complying with the Ruling.

Bruno is asking that all polio survivors and post-polio support groups send a copy of the  Ruling to the directors of their local SSA offices.  "It is vital that every Social Security Administration employee knows that the new PPS Ruling exists," said Bruno.  Polio survivors applying for SSDI, and those who have been denied, should immediately send a copy of the Ruling to the Social Security Administration personnel working on their cases -- including Administrative Law Judges -- as well as their Congressperson and Senators so that all disability determinations will be based on the latest policy.

(The Ruling can be found at:
http://a257.g.akamaitech.net/7/257/2422/14mar20010800/edocket.access.gpo.gov/2003/03-16719.htm
)

"I am very grateful to Congressmen Rothman and Sherwood for their efforts and perseverance in helping to move closer to fulfilling the promise of SSDI for polio survivors," said Bruno.  "But, although this battle has been the won, we still have many more to fight."  Bruno and the International Post-Polio Task Force are continuing to work with Congressmen Rothman and Sherwood, Pennsylvania Senator Arlen Specter and other members of Congress on a federal agenda for polio survivors that will also help seniors and anyone with a mobility impairment.  The agenda includes a modification of Medicare regulations to allow polio survivors and others to more easily receive power wheelchairs to prevent loss of arm function, no-interest loans to purchase wheelchair accessible vans so that power wheelchair users can continue working, a Department of Justice regulation to require adjustable-height examination tables in doctors offices and health care facilities, establishing a waiting list preference to expedite Section 8 housing approval for wheelchair users, declaring 2004 the “ International Year of Polio Awarenessâ€� and educating polio survivors and health professionals about polio vaccination and PPS.   Said Bruno, "The Social Security Ruling and federal PPS agenda may finally allow polio survivors to receive the care they so desperately need and make the International Post-Polio Task Force motto a reality:Â

"EVERY CHILD VACCINATED.
EVERY POLIO SURVIVOR -- AND DOCTOR -- EDUCATED."

-----
Subject: Would Like to be Listed on Your Site
   From: "Stephennie Rosendorf" <Stephennie@cfl.rr.com>

I am writing you as Vice President of the INTERNATIONAL POST POLIO SUPPORT ORGANIZATION (IPPSO).  As you can tell by our name we are a post polio sequale (PPS) support organization that is based on the internet; we offer support to those suffering from PPS through a medical library, social security help, a chat room for people who wish to talk to others with PPS and many other various things which can be found on our web site   http://www.ippso-world.org .

We are asking you add us to you web site so that people may find the help they need with PPS.  We grew out of what was the PRYS foundation after it had to be shut down due to Sparkie Lujan's health.  If you have PRYS listed on your site we are asking that you refer them to IPPSO as most of the former PRYS members are still with IPPSO.  Also, Sparkie was kind enough to give us all the information on the former PRYS site so we could carry on the work she had started.  Harlad Hasle, Norway, and myself Shari Fulton, Oregon, are co-founders of this IPPSO.

We would appreciate your making the changes we have requested.  If you have any questions you can write to Stephennie Rosendorf our Asst. Secretary Stephennie@cfl.rr.com who will be handling this project for us at this time.  If you have personal questions you would like to direct to me please feel free.

We at IPPSO appreciate your help and would appreciate an answer back to Stephennie as you make the changes.

Very sincerely yours,

Shari Fulton, Vice President (IPPSO)
INTERNATIONAL POST POLIO ORG.
102 Victoria Way, Central Point, OR 97502
Email:  sharifulton@charter.net
MSN: sharifulton@charter.net
Phone/Fax:  541-664-4348
Website:  http://www.ippso-world.org

and

Harald Hasle, President (IPPSO)
Email:  president@ippso-world.org
 

 Medical professional site: http://www.emedicine.com/pmr/topic110.htm
PPS doctor locator: http://ppsr.com/infolocator.html

-----
Subject: Sir Arthur C. Clarke writes
   From: "Gail Genereau" <genereau@vbe.com>

We have received a thank-you note from Sir Arthur C. Clarke. It was written June 13, 2001 and mailed through his Singapore office on his Sri Lanka stationery.

Here is what it says:

"Dear correspondent,

  Thank you for your letter; I am sorry that having been affected by Post-Polio Syndrome since 1984, I now require daily physiotherapy, which puts major demands on my time and energy. I can no longer walk unaided, and need a wheelchair to move any distance. As I have to sleep every  afternoon, I can only manage a 10 hour working day; even with nine secretaries in three continents, dealing with mail and faxes absorbs virtually the whole of my time. So I hope you will understand the need for this form letter.

Sincerely,"
(signed AtrCClarke)

He did write a postscript to the form letter:

"Thanks for 'Post Polio' book - rec'd just after I'd written the enclosed review - You are welcome to quote but not to print - "

He then included a type-written review of Dr. Silver's book that he had written for the British Polio Fellowship.

I am so pleased that he took the time to thank us. It made me chuckle that he is now forced to work only 10 hour days! So typical of a survivor! And he is 83 years old!

This is the last paragraph of his review:

"Now that I am completely wheel-chaired, I wish I had more time to spend in the delightful zero gravity environment of the sea - or better still, in orbit. As long ago as 1942, Robert Heinlein wrote a famous short story 'Waldo', describing how a crippled scientist was able to function in a space station. Well, last month, I had a half-serious invitation from the organization, which put Dennis Tito into orbit. They now have an extra seat. Would I like to go along?   I am thinking it over....."

It's so nice to feel his enthusiasm and his letter reveals a wonderful sense of humor! Just maybe, all your letters of encouragement, brought him confidence in knowing he's not alone. This little project reminded me that I am not alone;

We, all, are in this together.
 Gail in Appleton, Wisconsin

-----
Subject: The polio narratives: dialogues with FDR.
   From: Scout <scout@SKALLY.NET>

Bull Hist Med 2001 Autumn;75(3):488-534

The polio narratives: dialogues with FDR. Fairchild AL.

As a group of accounts that span the decades from the mid-1940s to the present,  the published polio narratives enable us to align their shifting perceptions of disability with social, cultural, and technological change. This paper identifies two distinct groups of narratives. Authors of the first group, writing between the mid-1930s and mid-1950s--a period of relative prosperity, conformity, and homogeneity--were uncomfortable with radical movements, diversity, and conflict; their narratives typically told of either full or substantial recovery.  Beginning in the mid-1950s-- the period of both McCarthy and the Civil Rights  movement--a second wave of narratives begins to tell stories of partial to serious disability; typically, they reflect on a lifetime of coping with chronic disability.

Both sets of narratives, however, represent a dialogue with Franklin Delano Roosevelt. Roosevelt himself, journalists, and the National Foundation for Infantile Paralysis all helped to create and promote a core polio narrative featuring FDR's triumph over disease and disability that would become a national myth. Yet while the early narratives reinforced the core elements of the Roosevelt myth, the later ones began to challenge them.

PMID: 11568488 [PubMed - in process]

  ...Cleo  scout@skally.net

-----
Subject: When you found out about PPS
   From: Richard Daggett <richarddaggett@MEDIAONE.NET>

Someone on this list mentioned the 1986 article in Family Circle magazine. That brought back memories. Wow!

In late June 1986 I started getting letters from people asking about the late effects of polio. The first day there were three. The next day there were three more. Then seven. I thought, 'What's going on here. Who are these people, and how did they figure out where to write?'

About the fourth or fifth day one of the letter included the clipping from the Family Circle. Then I vaguely remembered talking by telephone with a reporter from the magazine months earlier.

The article was titled "The Polio Scare Returns". It wasn't very long, just about three paragraphs, and at the bottom it said you could get more information by writing to the Polio Survivors Association. AND DID PEOPLE WRITE!

The letters kept pouring in. For about a week I answered each one individually. This was not going to work! I was being inundated with mail! There was no way I was going to be able to write a separate letter to everyone. I composed a form letter and wrote the first draft of what became the Poliomyelitis Fact Sheet. I gathered some volunteers together and we stuffed envelopes . . . . and we stuffed envelopes . . . and we stuffed envelopes.

The biggest single day we received ninety-six letters. From late June to early September we received over 3600 letters. (I still get an occasional letter from someone who put the clipping away and something
about their deteriorating health prompted them to dig it out).

The Polio Survivors Association was incorporated in 1975 to enhance the well-being and improve the quality of life for severely disabled polio survivors. Up to that time our operations were mostly in southern California. The Family Circle article changed things dramatically.

Richard Daggett, President
Polio Survivors Association   http://www.polioassociation.org/

-----   
Subject: On DaWeb..
   From: Scout <Scout@SKALLY.NET>
 

Sylvia Smith's Post-Polio Information & More: MULTIFRAMES and lots of graphics  http://www.fortunecity.com/meltingpot/eagle/1135/

  ...Cleo  scout@skally.net

-----
Subject: Music & PPS
   From: Roger Brown <rbrown7@BIGPOND.NET.AU>

I've at long last got around to putting a small section in my website about PPS and how it relates to me as a musician.

Nothing to write home about considering the problems most of you people cope with, but if the subject interests you, please visit (URL below).

  Roger
 

Roger Brown
rbrown7@bigpond.net.au
http://rogerbrown.tripod.com/

----- 
Subject: Dynamic water exercise in individuals with late poliomyelitis
   From: tommy <tlcon@WEBOUND.COM>

http://www.archivespmr.org/scripts/om.dll/serve?action=searchDB&searchDBfor=art&artType=
full&id=aapmr0820066action=searchDB&searchDBfor=art&artType=full&id=aapmr0820066
(join above lines)

A PDF version is also available.

-----
Subject: [PPM] On DaWeb
   From: Scout <Scout@SKALLY.NET>

The American Academy of Orthotists & Prosthetists
http://www.oandp.org/
Many of their Journal articles online in full

The Virtual Health Care TeamTM is a collection of interdisciplinary cases sponsored by the School of Health Professions and the School of Medicine, University of Missouri, Columbia.
http://www.hsc.missouri.edu/~shrp/vhctwww/

These are facinating presentations, showing a "team approach" to treatments.. really neat design on these pages.. two of them on PPS..

Assistive Devices: "the role of assistive devices in compensating for fatigue, pain, loss of strength, mobility, and energy in the daily life of a person with post-polio syndrome."
http://www.hsc.missouri.edu/~shrp/vhctwww/case499/

and Post-Polio Syndrome [in Spanish too]
http://www.hsc.missouri.edu/~shrp/vhctwww/case399/
Síndrome Post-poliomielítico
http://www.hsc.missouri.edu/~shrp/vhctwww/case399sp/

Imagen Virus Polio 1: Three-Dimensional Structure of Poliovirus1
http://teleline.terra.es/personal/nnunez/imagenviruspolio1.html
and
http://teleline.terra.es/personal/nnunez/indexviral.html
Indice Viral (Spanish)

  ...Cleo  scout@skally.net

-----
Subject: New on DaWeb
   From: Scout <scout@SKALLY.NET>

Pool/Exercising
http://www.skally.net/ppsc/swim.html

This is a revised, by author, version of a post Peggy Bran made to PPMed about the Post Polio Awareness & Support Society of British Columbia water exercise program.  Big time thanks to Peggy for allowing this info to be available to even more people ;-)
--

El Síndrome de la Pospoliomielitis (Spanish)
http://www.ninds.nih.gov/health_and_medical/pubs/el_sindrome_de_la_pospoliomielitis.htm
 

A New Challenge for Former Polio Patients -Zamula 1991
http://www.fda.gov/bbs/topics/CONSUMER/CON00006.html
 

  ...Cleo  scout@skally.net

-----
Subject: Articles published Nov 15,2000 in San Diego Union Tribune!
   From: Linda Dempster <DEMP12@AOL.COM>

http://members.tripod.com/sandiego_polio/SanDiegoUT.htm

Thanks Steve for this link.
GREAT ARTICLES!!! Recommend all to read. I will be happy to copy and paste and send out to a folks who might want them but can not access the internet. Let me know......

BLESSINGS, Linda Dempster, the one in the CA Desert near Palm Springs

Articles published Nov 15,2000 in San Diego Union Tribune! ALL Well worth reading for yourself, family and friends!

Articles are named:

San Diego Union Tribune Article
1. <A HREF="http://members.tripod.com/sandiego_polio/Pfaff-UT.htm">
<Recurring Nightmare</A>
 

2. <A HREF="http://members.tripod.com/sandiego_polio/MC-UT.htm">
<Cure in the Long Term</A>
 

3. <A HREF="http://members.tripod.com/sandiego_polio/Sauer-Perlman.htm">
<Interview with Dr. Susan Perlman</A>
 

4. <A HREF="http://members.tripod.com/sandiego_polio/MaryClarePPS.htm">
< Interview with Mary Clare Schlesinger</A>
 

5. <A HREF="http://members.tripod.com/sandiego_polio/TrackingPPS.htm">
<Tracking PPS by Dr. Sam Pfaff</A>
 

6.<A HREF="http://members.tripod.com/sandiego_polio/novel_approach.htm">
<"A Novel Approach to Breathing"</A>
by Mary Clare Schlesinger
 

HREF="http://members.tripod.com/sandiego_polio/index.htm">
<Home</A>

-----
Subject:  Holiday Tips
   From: "Grace R. Young" <gryoung@PACBELL.NET>

Hi All,

Check my web site for tips on coping with the holidays.

Grace

--
For info on energy conservation click here for Grace Young's web site
http://www.geocities.com/graceryoung/

-----
Subject:  CPK
   From:  Linda <ljghost@THEWORKS.COM>

 Yes... the CPK test is one of the diagnostic tool for overuse in PPS and to diagnose PPS.  A heart attack will register high in one kind of CPK.  Skeletal muscle damage will register another.  It can be determined as to what kind of muscle is being damaged and should be separated out in the test so they don't call it a heart attack in error.  You can LOWER your CPK by stopping all that overuse of your wiped out muscles.  It means MUSCLE DAMAGE!!  It's the one of the best ways to tell you to slow down.  Have you also seen an EMG where your motor neurons are taxed from overuse?  The remaining, struggling motor unit might fill the screen instead of being this nice neat action in the middle of the screen.  And newly orphaned cells crying out with a 'blip blip....where are yoooooou.........' What an impression that made on me!!

Pay attention to those tests.
            'Slow down you're goin' too fast....etc'
Linda in CA

-----
Subject: Letter to the editor
   From: Helen Bergan <HBergan@CS.COM>

Hello,

Most of us wish there were some way to increase public awareness of PPS. I saw a chance last week when the Washington Post had an article about losing energy at about age 60.  Here's the letter I wrote.  They printed it today. Maybe if even a couple people realize this may be their problem, it will be useful information. I'm going to keep trying to get the Post to do a full article on PPS.

Dear Editor:

Your article, "Energy: Using It, Losing It, Getting it Back," June 6, 2000, overlooked one possibility for decreased energy at age 60. Doctors who hear patients say they are "slowing down much too much" should ask one simple question, "Did you ever have polio?" If the answer is yes, even if there were no lasting paralysis, it can mean the patient has post-polio-syndrome, a progressive muscle disease that occurs 30-40 years after those polio epidemic years. The best guess why it is happening is that weakened muscles are now giving out.

I know the symptoms because I spent a long time wondering why I was getting weaker before I heard of PPS.  Although polio left me disabled, I never expected to experience increased weakness all these years later.

Helen Bergan

-----
Subject: How Much can you earn and still be on SSDI? Plus some tips on applying
         Date: Fri, 25 Jun 1999 17:23:46 -0600

Just yesterday or the day before, Lea Curry posted a terrific file on Social Security Disability Insurance: How Much can you earn and still be on SSDI? Plus some tips on applying

She obviously did a heck of a lot of research and shared her findings, plus some of her personal experiences.. and has given kind permission for that post to be placed on the web:

http://www.skally.net/ppsc/ssdi-2.html

 -----
 It appears the Canadian Post-Polio clinics have a healthy perspective in dealing with BOTH the physical and psychological aspects of Post-Polio Syndrome.

  <http://www.tv.cbc.ca/healthshow/pastitem/postpoli.html>

Deborah

-----

In doing research for my fourth book, I came across an article written by a polio survivor.  Dependent upon an iron lung and totally in a wheelchair, Mark O'Brien describes how he tried to get an interview with world renowned physicist Stephen Hawking, who has ALS.  It is lengthy -but you will enjoy the story immensely and some of the insights about disability are worth pondering.

   http://www.pacificnews.org/marko/hawking.html

   Viola Pahl

 -----

IndependenceFirst: This one is going to be great I think.. super idea!
http://www.IndependenceFirst.org/

-----
  Subject:  Overturning PPS SSDI Denials
     Date:  Wed, 7 Apr 1999 12:11:20 EDT
     From:  Harvest Center <HarvestCtr@AOL.COM>

PLEASE FORWARD TO ALL POLIO SURVIVORS . . .

On February 7, 1999 . . .

. . . Congressman Steve Rothman received a letter from Social Security Administration Associate Commissioner Charles Mullen.  Thanks to YOUR letters, SSA has agreed to our request to convert certain portions of the POMS for "The Late Effects of Poliomyelitis" into Social Security Rulings that bind administrative law judges decisions about disability determinations for polio survivors.   SSA states it will "determine if additional language needs to be included in the rulings to ensure that all the potentially disabling features of post-polio are included."

Although administrative law judges' rulings have been generally favorable with regard to polio survivors, the education that will accompany the release of an Social Security Ruling should educate local adjudicators about the "The Late Effects of Poliomyelitis" POMS and may prompt them to more frequently make informed disability determinations.

SSA has also agreed to review the neurological listings in the Listing of Impairments and is considering revisions to include "The Late Effects of Poliomyelitis."  Issuing such a listing would help enforce local adjudicators proper use of the POMS to determine disability.   However, after the review, a listing for "The Late Effects of Poliomyelitis" may not be created.

I have been contacted by an SSA neurologist who requested 100 SSDI denials in early March for her review, providing data to guide the creation of a Ruling or Listing.  To help her, and create our own database of denials, would you please send me copies of your SSDI application forms and denial letters from SSA, ESPECIALLY IF YOUR DENIAL WAS OVERTURNED.  I will log your symptoms, the reasons for denials and forward your materials to SSA for review.  (There's a mailing label below for you to use. Please write SSDI on the envelope if you don't use the label.)

With your help, and that of our  Congresspeople, we have come remarkable far in changing the SSDI system for PPS in a very short time.

Thank you for all your help!

Sincerely,

Dick Bruno

Dr. Richard L. Bruno, Chairperson, International Post-Polio Task Force

PPSENG@AOL.COM

Go to:

http://members.aol.com/harvestctr/pps/polio.html

for the POMS and SSDI information

Dr. Richard L. Bruno, Director,  The Post-Polio Institute
Englewood Hospital and Medical Center
350 Engle Street, Englewood, New Jersey  07631

             SSDI INFORMATION

 -----
Subject:  Article by Arthur C. Clarke
    From:  "Ron Amundson" <ronald@hawaii.edu>

Here's a piece by PPS veteran Clarke. He's still got a science fiction take on life, but his disability is influencing his thought.  It starts:

"It all started a couple of thousand generations ago, when some genius-type Flintstone realized that a forked branch could be used as a third limb, relieving a leg that was temporarily disabled."

http://www.forbes.com/asap/99/1004/143.htm

Ron

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  Subject: A Post Polio "Normal's" Reconciliation with the Ghost of Polio Past
     From: Angus <angus1@CRIS.COM>

 Sandy and the Polio Network News have graciously allowed us to place a revised version of a very interesting 2-part article that was first published in the Fall 1989 and  Winter 1990 editions of the Polio Network News..

A Post Polio "Normal's"