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 Baltimore, Maryland before coming to Miami two years ago. Dr. Ference is hosting four seminars for polio survivors and offers some revolutionary methods of treatment to better the quality of life for PPS'ers. At the seminar, one of Dr. Ference's patients told us that he was still working and had to speak to individuals and groups as part of his job. His voice often became hoarse and the volume faded away as he tired. He had gone through speech therapy and surgery with no improvement.

 

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,
Stockholm, Sweden.

 

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.

Mouse Skin Cells Changed Directly into Nerve Cells

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 England in the 1940's. She and her parents and younger brother were living in Britain at the time, having fled their native country of Germany when Smith was in her teens. She had just completed a camping trip with the Girl Scouts in the Bavarian Mountains when she came down with a fever that would change her life. None of the German doctors knew what she had until an American recognized the symptoms as polio.

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 Vermont. Despite having limited English-speaking skills when she arrived as a high school junior, she completed college at Middlebury, studying political science with a minor in economics, as well as one year of graduate school at Harvard in the women's business administration program.

"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 2 a.m., I had my first child," she said.

"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 Minnesota.

Fox grew up in Readsboro and Jacksonville, where many people came down with polio in the 1950s. She and her cousin both caught it - one day apart from each other - when Fox was 17 years-old.

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, Rochester, N.Y. - in the midst of an epidemic. She was 4 years-old and doesn't remember much of the ordeal.

"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 Sudan to stop a polio outbreak spreading across the Horn of Africa. In India, with its high population density and large number of births, polio continues to challenge even the most efficient immunization programs.

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

Case breakdown by country

Country

Year-to-date
2010

Year-to-date
2009

Total in
2009

Date of onset of most recent case

Afghanistan

2

38 

7 January 2010 

Pakistan

2

89 

7 January 2010 

Senegal

1

5 January 2010 

India

3

732 

5 January 2010 

Nigeria

1

388 

3 January 2010 

Chad

1

68 

2 January 2010 

Mauritania§

0

12 

22 December 2009 

Sierra Leone

0

12 

28 November 2009 

Mali

0

12 November 2009 

Guinea

0

41 

8 November 2009 

Liberia

0

11 

26 October 2009 

Burkina Faso

0

15 

25 October 2009 

Cameroon

0

15 October 2009 

Angola

0

29 

15 September 2009 

Burundi

0

12 September 2009 

CAR

0

14 

9 August 2009 

Côte d'Ivoire

0

26 

6 August 2009 

Kenya

0

18 

30 July 2009 

Sudan

0

45 

27 June 2009 

DRC

0

24 June 2009 

Niger3

0

15 

28 May 2009 

Uganda

0

10 May 2009 

Benin

0

20 

19 April 2009 

Togo

0

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.