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Information on Intravenous Immunoglobulin for post-polio syndrome is here.
-----
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&nb