IPPSO
NEWS MAGAZINE
Vol 3 No. 2 February
2010
Editors: Mike and Yvonne Isaacson
It
is ability that counts - not disability
From The Editors Desk
For
those of you who don't already know, the IPPSO Board have voted that we should
have Co-Presidents. As a result, Barbara Gratzke and Shari Fiksdal are now
joint Presidents of IPPSO. Thanks are due to Barbara Gratzke for all the work
that she has done for IPPSO generally, and from me in particular, as Magazine
Editor, for her sterling work in beginning the compilation of an index to
articles in the issues of the magazine that have been posted onto our
website. Once that index is completed, it will be a valuable addition and there
will be no-one more pleased than myself.
Other
changes to Board members have also been made. Susan Kerr has been appointed
Vice-President (Susan, how do you manage everything including your New Zealand
PPS group as well!) and Dianne Ploussard has agreed to accept the post of
Treasurer after the loss of her only sister eighteen momths ago and also the
loss of her son just two weeks ago. It is not at all fair that so much sadness
should be borne by so valuable a person. You have our deepest sympathy, Dianne.
Shari
has been going through a pretty bad time health-wise these last few months, but
it seems that the Doctors in Boston might soon be able to help her regain her
strength and make breathing that much easier for her. Having recently organised
and taken a big part in the Salk conference on breating, Gladys Swenrud
has been a pillar of strength to Shari. Those of you who, like Shari, are
experiencing breathing problems will benefit greatly by visiting http://poliotoday.org/ and listening to
the Salk conference, on which we will be reporting in a later issue of
this publication. If you join this group, you will have access to "Ask the
Expert" in which Dr. Susan Perlman will answer your PPS question. We
have Gladys to thank for that too!
In
the meantime, although she has worked as a Secretary almost all her life, Shari
is having finger trouble and keeps hitting the wrong keys, so many of her words
are mis-spelled. .... hang in there Shari, hope is on the horizon! In the
meantime, always remember that.......
Aoccdrnig
to a rscheearch at Cmabrigde Uinervtisy, it deosn’t mttaer in waht oredr the
ltteers in a wrod are, the olny iprmoetnt tihng is taht the frist and lsat
ltteer be at the rghit pclae. The rset can be a total mses and you can sitll
raed it wouthit a porbelm. Tihs is bcuseae the huamn mnid deos not raed ervey
lteter by istlef, but the wrod as a wlohe. Amzanig
huh?
Mike
Isaacson Ed
Hehehe Corner
Laugh at your problems, everybody else does.
P.P.S. and Vocal Problems
From
Barbara Gratzke
Dr. Tamar Ference, who is now the Director of the Miami PPS
Clinic ran a similar Clinic in
Dr. Ference noticed that his stomach and diaphragm muscles had weakened and were causing the vocal problem. So she suggested that he wear a 6 inch wide corset around his waist and that simple solution did the trick for him. He demonstrated the 'before and after' effect by donning the corset whilst speaking to us, and his voice went from gravelly and whispery to a clear, loud sound.
Dr. Ference had cautioned him not to wear the corset all the time, because his stomach muscles would probably weaken even further with disuse and the effect on his ability to project his voice would be adversely affected.
Another of Dr. Ference’s patients told us about an injection she had been given, of cortisone together with a gel into her knee. Apparently, the cortisone alleviates pain and the gel is a lubricant that prevents the bones from rubbing against each other. Although this cannot be administered too often, it solved her problem and she was soon able to walk without pain. Yet another patient said she had had the same shot last August, still has no pain and can walk short distances easily.
Dr. Ference had another patient tell us about her severe allergic reactions to multiple drugs previously prescribed for the back pain that her severe scoliosis was causing. Dr. Ference prescribed a different type of pain medication, which had no adverse allergic reaction and she was now free of a lot of the debilitating pain that was keeping her unable to function on many days.
Whereas these remedies are all anecdotal and may not work at all in your own case, it really is refreshing to have a doctor try less invasive type treatments.
For more complete information on breathing and PPS go to PolioToday.org
Hehehe Corner
Behind every
successful man is his woman. Behind the fall of a successful man is usually
another woman.
Identification of Novel Candidate Protein Biomarkers for PPS.
Implications for diagnosis, neurodegeneration and neuroinflammation.
Gonzalez H, Ottervald J,
Nilsson KC, Sjögren N, Miliotis T, Von Bahr
H, Khademi M, Eriksson B, Kjellström S, Vegvari A, Harris R, Marko-
Varga G, Borg K, Nilsson J, Laurell T, Olsson T, Franzén B.
Division of Rehabilitation Medicine, Department of Clinical
Sciences,
Danderyd Hospital, Karolinska Institute,
Survivors of poliomyelitis often
develop increased or new symptoms decades after the acute infection, a
condition known as post-polio syndrome (PPS). The
condition affects 20-60% of previous polio patients, making it one of the most
common causes of neurological deficits worldwide. The underlying pathogenesis
is not fully understood and accurate diagnosis is not feasible.
Herein we investigated whether it was possible to identify proteomic profile
aberrations in the cerebrospinal fluid (CSF) of
PPS patients. CSF from 15 patients with well-defined PPS were analyzed for 1499
proteins.
The results were compared to data obtained from ten healthy controls and 33
patients with other non-inflammatory diseases which served as negative controls.
In addition, 17 samples from persons with secondary progressive multiple sclerosis (SPMS) were added as relevant
age-matched references for the PPS samples.
The CSF of persons with PPS displayed a disease-specific and highly predictive
(p=0.0017) differential expression of five distinct proteins: gelsolin,
hemopexin, peptidylglycine alpha-amidating
monooxygenase, glutathione synthetase and
kallikrein 6, respectively, in comparison with the control groups.
An independent ELISA confirmed the increase of kallikrein 6. We suggest that
these five proteins should be further evaluated as candidate biomarkers for the
diagnosis and development of new therapies for PPS patients.
Hehehe Corner
When tempted to
fight fire with fire, remember that the Fire Department usually uses water.
Thank You for your Time.
A young man learns what's most important in life from the guy next
door.
It had been some time since Jack had seen the old man. College,
girls, career, and life itself got in the way. In fact, Jack moved clear across
the country in pursuit of his dreams. There, in the rush of his busy life, Jack
had little time to think about the past and often no time to spend with his
wife and son. He was working on his future, and nothing could stop him.
Over the phone, his mother told him, "Mr. Belser died last night. The
funeral is Wednesday." Memories flashed through his mind like an
old newsreel as he sat quietly remembering his childhood days.
"Jack, did you hear me?"
"Oh, sorry, Mom. Yes, I heard you. It's been so long since I thought of
him. I'm sorry, but I honestly thought he died years ago," Jack said.
"Well, he didn't forget you. Every time I saw him he'd ask how you were
doing. He'd reminisce about the many days you spent over 'his side of the
fence' as he put it," Mom told him.
"I loved that old house he lived in," Jack said.
"You know, Jack, after your father died, Mr. Belser stepped in to make
sure you had a man's influence in your life," she said.
"He's the one who taught me carpentry," he said. "I wouldn't be
in this business if it weren't for him. He spent a lot of time teaching me
things he thought were important...Mom, I'll be there for the funeral,"
Jack said.
As busy as he was, he kept his word. Jack caught the next flight to his
hometown. Mr. Belser's funeral was small and uneventful. He had no children of
his own, and most of his relatives had passed away.
The night before he had to return home, Jack and his Mom stopped by to see the
old house next door one more time.
Standing in the doorway, Jack paused for a moment. It was like crossing over
into another dimension, a leap through space and time. The house was exactly as
he remembered. Every step held memories. Every picture, every piece of
furniture.... Jack stopped suddenly.
"What's wrong, Jack?" his Mom asked.
"The box is gone," he said
"What box?" Mom asked.
"There was a small gold box that he kept locked on top of his desk. I must
have asked him a thousand times what was inside. All he'd ever tell me was
"the thing I value most," Jack said.
It was gone. Everything about the house was exactly how Jack remembered it,
except for the box. He figured someone from the Belser family had taken it.
"Now I'll never know what was so valuable to him," Jack said.
"Oh well! I had better get some sleep. I have an early flight home,
Mom."
It had been about two weeks since Mr. Belser died Returning home from work one
day Jack discovered a note in his mailbox. "Signature required on a
package. No one at home. Please stop by the main post office within the next
three days," the note read.
Early the next day Jack retrieved the package. The small box was old and looked
like it had been mailed a hundred years ago. The handwriting was difficult to
read, but the return address caught his attention. "Mr. Harold
Belser" it read. Jack took the box out to his car and ripped open the
package. There inside was the gold box and an envelope. Jack's hands shook as
he read the note inside.
"Upon my death, please forward this box and its contents to Jack Bennett.
It's the thing I valued most in my life." A small key was taped to the
letter. His heart racing, as tears filling his eyes, Jack carefully unlocked
the box. There inside he found a beautiful gold pocket watch.
Running his fingers slowly over the finely etched casing, he unlatched the
cover. Inside he found these words engraved:
"Jack, Thanks for your time! - Harold Belser."
That was when Jack realised that the thing that Mr. Belser valued most was...my
time!
Jack held the watch for a few minutes, then called his office and cleared his
appointments for the next two days.
"Why?" Janet, his assistant asked.
"I need some time to spend with my son," he said. "Oh, by the
way, Janet, thanks for your time!"
"Life is not measured by the number of breaths we take but by the moments
that take our breath away."
And - Thanks for the time that you have given to MY
life, it has also made a difference.
Hehehe Corner
It's not the fall
that kills you; it's the sudden stop at the end.
Do Your Muscles Twitch???
Or Cramp?? Or Prickle??
Recent evidence suggests that using a combination of medications
that increase 5-hydroxytryptophan, nor-epinephrine, and GABA levels may be
helpful. Dopamine stimulation has also been used with mixed results. Other
modalities such as non impact aerobic exercise and cognitive behavioral therapy
may also be useful.
Involuntary twitching or jerking of the lower leg with symptoms
such as tickling, prickling or burning is another set of symptoms that may be
due to overexertion and fatigue. It may also be a result of vitamin B
deficiency, diabetes, caffeine, drug withdrawal or food allergies. Beneficial
supplements include: folic acid, vitamin E, iron, vitamin B complex. Reduce or
eliminate caffeine.
Nocturnal leg cramps may also present with leg and hip pain as
well as muscle twitching. Tingling, prickling or burning feeling under the skin
can be caused by overexertion, muscle spasm or exposure to cold damp weather.
This condition feels better with continuous movement and feels worse with rest.
Homeopaths have used Rhus Toxicodendron.
For leg cramps, Homeopathic physicians have prescribed arnica.
Commonly known as the mountain daisy, Arnica Montana's healing properties were
first discovered in the 16th century. Mountain climbers would chew the fresh
plant to relieve soar muscles or bruises from falls. Today pro athletes as well
as "soccer moms" use Arnica for the same indications in the
convenient pellet form. Some surgeons also recommend Arnica to speed up
recovery from soreness and bruising associated with surgery.
Like most homeopathic medicine in acute situations, Arnica works
best when taken at the onset of symptoms.
Drugs that may cause leg and hip pain along with muscle twitching
and cramping include cholesterol-lowering drugs (“statins”) and quinolone
antibiotics. Patients that suffer from cancer will often have bizarre
neurological symptoms and the chemotherapies they receive may also be
responsible for disturbing symptoms such as numbness, burning, muscle
twitching, and pain.
Post
polio syndrome, a condition that afflicts a disturbingly high number of
ex-polio patients, is also associated with ill-defined but severe limb pain and
muscle twitching.
Hehehe Corner
Some people say
"If you can't beat them, join them". I say "If you can't beat
them, beat them", because they will be expecting you to join them, so you
will have the element of surprise.
A trio
of genes added to mouse skin cells can transform them directly into functioning
nerve cells, a new study reports. With further research, this basic technique
may lead to treatments for Alzheimer’s, Parkinson’s disease and other
neurological disorders. (Of which polio surely is one........ Ed.)
The new
study builds on earlier research showing that adding just a few genes to
fibroblasts, a type of skin cell, can convert them into versatile cells called
induced pluripotent stem cells, or iPS cells. iPS cells share many
characteristics of embryonic stem cells. Both can grow indefinitely in a
laboratory dish, and both can theoretically change, or differentiate, into all
cell types found in the body. But the process of creating iPS cells and then
coaxing them into new cell types is time-consuming and inefficient. Typically,
only about 1 or 2% of cells successfully adopt a new identity.
Dr.
Marius Wernig and colleagues at Stanford University School of Medicine sought
to bypass the iPS step and convert already-differentiated cells directly a new
type. They were encouraged by the earlier success of an NIH-funded team at
Harvard, who in 2008 used 3 genes to convert one type of pancreatic cell
directly into another pancreatic cell that secretes insulin. The Stanford team
set out to reprogram skin cells directly into nerve cells. Their research was
supported in part by NIH’s National Institute of Neurological Disorders and
Stroke (NINDS).
As
described in the January 27, 2010, online edition of Nature, the scientists
identified 19 genes known to be involved in either cellular reprogramming or
neural development and function. The genes all code for transcription factors,
proteins that bind to DNA and turn other genes on and off. The researchers
inserted the genes into lentiviruses and added the viruses to fibroblast cells
from embryonic mice. A month later, the cells had the appearance of nerve cells
and were producing neural proteins.
The
scientists further narrowed the 19 genes down to just 3 that could quickly and
efficiently transform fibroblasts taken from either embryonic or young mice
into nerve cells. About 20% of the fibroblasts converted into neural cells in
less than a week. Tests showed that the newly transformed cells not only looked
but also behaved like neurons. They formed functional connections, or synapses,
with each other and with brain-derived neurons in a laboratory dish.
“We were
very surprised by both the timing and the efficiency,” said Wernig. “This is
much more straightforward than going through iPS cells, and it’s likely to be a
very viable alternative.”
The
technique can now be studied to learn more about how cellular identities are
determined and how they can be manipulated. Wernig and his colleagues are
attempting to make similar conversions with human cells. But they note that much
more research is needed before this type of procedure could be considered for
clinical use.
Hehehe Corner
Money can't buy
happiness, but it sure makes misery easier to live with.
Religious Encouragement to Vaccinate against
Polio
Leading Islamic academy issues edict
The International Islamic Fiqh Academy (IIFA) has issued a strong
statement encouraging vaccinations against polio as a matter of urgency, and
calls on Ministries of Health in Muslim countries to intensify their efforts to
eradicate polio. The statement calls on parents and guardians - to ensure that
their children benefit from all polio vaccination efforts- and on religious
scholars and mosque leaders to encourage communities to support polio
eradication campaigns.
The edict was researched at the request of the Secretary General of the
Organization of Islamic Conference, H.E. Prof. Ekmelddin Ihsanoglu. The request
reflects the OIC's concern that polio is still endemic in many of its member
states, and addresses the critical need to raise awareness in Muslim
communities about the benefits of polio vaccination campaigns. Quoting
extensively from the Qu'ran, the edict lays out the duty to protect children
when disease is preventable.
Hehehe Corner
I discovered that
I scream the same way whether I'm about to be devoured by a great white shark
or if a piece of seaweed touches my foot.
A Polio Story
It could almost be your own! .....Ed
Helen Smith (no real names are used in this article) has lived a
life filled with family, adventure and love, and whether it’s her German
heritage or a fierce determination of her own, nothing has kept her from
getting what she wanted out of life.
Until she stands up, revealing that she walks with a cane, you
wouldn't know she suffered from polio as a teenager, especially not after
listening to the stories she has to tell of raising two children and embarking
on overseas adventures.
Smith was stricken with the disease in
Smith
pulled through the illness, which oddly enough was not caught by anyone else,
neither family members nor the 40 young Girl Scouts with whom she had just shared
a tent.
She
spent a year in the hospital and, with the use of a cane, learned how to get
along with the limited function of her leg muscles. One year after she
contracted the disease, she and her family came to
"My
parents always had said that their children would go to college," she
said.
Smith
met her husband, Don, and together they had two children of their own. Her
troublesome "drop toe," a common symptom of polio that causes
sufferers to stumble and stub their toes, was repaired with an ankle fusion
operation just in time
"I
had the cast taken off in the morning, and that night, probably around
"All
the nurses were oohing and ahhing about you getting your cast off and scrubbing
your skin, but they didn't have much time for that," Don Smith remembered
with a laugh. It took years of wearing cumbersome leg braces before the ankle
fusion solved the problem and left Smith relatively unhindered, still walking
with a cane, until she had to receive artificial knees later in life.
Now, she
is facing an entirely new battle with the disease. "We used to be members
of the swimming club, but now all day I have to wear two braces, and they're
hard to get on and off," she said.
Smith is
living with post-polio syndrome, a recurrence of the disease that appears in
about 40 percent of patients, usually around 30 years after the initial
infection. Symptoms include loss of muscle strength and pain in areas where previously
there had been none.
"I
can do things for a while, but I don't have much strength," Smith said.
"I always managed. Now I keep a walker that folds up, and outside I use
crutches."
"In
polio, it's a fight to stand up," she added. "And in post-polio, you
go back ... and heaven forbid, there's the walker."
One
theory about post-polio syndrome, Smith said, is that certain muscles are used
so much in order to compensate for the weakness of others that years later they
just can't handle the strain any longer.
"Most
people with polio tend to be overachievers," Smith said, "pushing
straight through, saying, 'If I can't do it this way, I'll do it that way.' We
use our muscles to the fullest."
"It
is frustrating -- just when you think you've got the polio pretty well under
control, and you feel settled, there's the post-polio," said Martie Fox, a
post-polio syndrome patient who lives in
Fox grew
up in Readsboro and
She
spent one week in an iron lung, a piece of equipment designed to keep polio
patients from dying when their lungs became paralyzed.
Only the
patient's head is exposed, and he or she can only talk while the machine is
"breathing" out.
"It
was terrifying," Fox said.
Despite
the setback, Fox eventually recovered her ability to walk, with some paralysis
also occurring in her arms and hands. She spent most of her working years as a
secretary within her local school district. Many years later, she realized she
was suffering from post-polio syndrome when watching the late-night news.
"They
had a story taking about how post-polio syndrome has arrived," she said.
"I had been fatigued a lot more than usual and thought, 'Boy, am I getting
lazy,' but I saw (the news story) and said, 'Hey! It's not my fault!'"
Janet
Purdie, also had almost no trouble walking at all until she began to see the
symptoms of post-polio take hold of her ability to use her legs about 6 1/2
years ago.
Like
Fox, Purdie caught the disease in her hometown -- in her case,
"I
remember lying on the couch, and my arm hurt terribly," Purdie said.
"The doctor told my mother that I didn't have to go to the hospital, and
that I was out of danger."
She has
had weakness in one arm her whole life but still raised two children, whose
hair she kept short when they were young so that it would be easier to manage
with one hand.
She said
post-polio syndrome is often mistaken for other things; the slow, degenerative
loss of muscle function is much like ALS, the major difference being that ALS
ultimately causes breathing problems. Purdie now uses a wheelchair to get
around all of the time.
She said
she hopes that the disease can be eradicated soon. "It's been wonderful
(to see the disease controlled), but sometimes countries don't keep up; if no
one has it for a while, their leaders give up giving it them the vaccine."
she said. And she's right - despite vaccine being available for decades, in a
few remaining parts of the world there is still a massive, ongoing effort to
wipe out the disease.
According
to Unicef's official Web Site, on April 22, emergency measures have were
launched by the government of southern
The more
cases of polio there are in this crazy world of ours, the more “polios” there
are who will eventually develop PPS. Can we beat PPS if we have to? You
betcha!!
Can we
make certain that every kid on this planet gets the vaccine, never contracts
polio and never develops PPS? Well............. you tell me!
Hehehe Corner
Just
remember...if the world didn't suck, we'd all fall off.
World Polio Virus Weekly Update
Data as at February 2, 2010
|
Country |
Year-to-date |
Year-to-date |
Total in |
Date of onset of most
recent case |
|
Afghanistan |
2 |
0 |
38 |
7 January 2010 |
|
Pakistan |
2 |
3 |
89 |
7 January 2010 |
|
Senegal |
1 |
0 |
0 |
5 January 2010 |
|
India |
3 |
3 |
732 |
5 January 2010 |
|
Nigeria |
1 |
4 |
388 |
3 January 2010 |
|
Chad |
1 |
0 |
68 |
2 January 2010 |
|
Mauritania§ |
0 |
0 |
12 |
22 December 2009 |
|
Sierra
Leone |
0 |
0 |
12 |
28 November 2009 |
|
Mali |
0 |
0 |
2 |
12 November 2009 |
|
Guinea |
0 |
0 |
41 |
8 November 2009 |
|
Liberia |
0 |
0 |
11 |
26 October 2009 |
|
Burkina
Faso |
0 |
0 |
15 |
25 October 2009 |
|
Cameroon |
0 |
0 |
3 |
15 October 2009 |
|
Angola |
0 |
0 |
29 |
15 September 2009 |
|
Burundi |
0 |
0 |
2 |
12 September 2009 |
|
CAR |
0 |
0 |
14 |
9 August 2009 |
|
Côte
d'Ivoire |
0 |
0 |
26 |
6 August 2009 |
|
Kenya |
0 |
0 |
18 |
30 July 2009 |
|
Sudan |
0 |
0 |
45 |
27 June 2009 |
|
DRC |
0 |
0 |
3 |
24 June 2009 |
|
Niger3 |
0 |
1 |
15 |
28 May 2009 |
|
Uganda |
0 |
0 |
8 |
10 May 2009 |
|
Benin |
0 |
0 |
20 |
19 April 2009 |
|
Togo |
0 |
0 |
6 |
28 March 2009 |
Hehehe Corner
They say that one out of every five people is Chinese. Well, I'm
sure that it isn't my Mom or my Dad or me, so it could only be my brother Colin
or my other brother Ho Chee Choh, but I think that it is Colin.
Donation
On February 11, 2010, IPPSO received a donation of $40 paid into
our Paypal account from Bob and Bobbi Hotchkis, which was made "In memory
of Vickie Valdez" from Grants Pass, Oregon. Vickie Valdez had PPS. We only
know that she suffered with the rest of us. We very gratefully
accept this valuable donation with thanks to the donor and condolences to
Vickie's family and friends.
We thank those of you who have paid your yearly dues of $20 and
hope that you will continue to do so. If you wish to make a gift to IPPSO
as Vickie's friends did, we guarantee it will be used to help others who
have PPS.