IPPSO NEWS MAGAZINE

Vol 2 No 8 August 2008 Editors: Mike and Yvonne Isaacson

It is ability that counts, not disability

From the Editor's Desk

Money Money Money Money!!
I once worked for a millionaire and he told me that the most difficult thing in the world was to make money. There he was, sitting opposite me, with a seven figure income (each and every month!!!) and he was telling me how difficult it was to earn money. He wasn't pleading poverty he said; he just needed enough to keep going. IPPSO is rather like that millionaire (only without the milliions) - we also just need enough to keep going. Which reminds me..........
More Money Money Money Money!!
It's that time of the year again, when I sit on the sidewalk holding the IPPSO begging bowl. I hate to remind you, but we do need donations and contributions so that we can keep going. We don't need a million dollars - this time! but it all costs money (and a lot of it too!) to run this organization so anything you can send us will, of course, be most gratefully received and put to very good use too. Dig deep into your pockets folks, it really is worth it, isn't it!!
Polio - from the 1940's onwards....... and before as well
Many of us contracted polio when we were too young to remember everything about it - the epidemic, the way everyone panicked in case it struck their town, the hospital wards full of fellow survivors, not being able to have our parents with us, the lumbar punctures, (that long long needle) the hot toweling that we were wrapped into, the iron lungs, those heavy steel braces and oh! so many other things that frightened us when we were little kids - some of us babies, no more than a few months old. So, for those of us who wish to be reminded, and also for those who were too young at the time, I am beginning a series of articles in this and future magazines. (it is far too long for one issue only). So, without any further ado...........

Polio - The Panic!!!!!

Polio occurred primarily in July, August, and September and hit regardless of geographic region, economic status, or population density. Relatively few people showed any symptoms and even fewer died or experienced paralysis, but the physical effects were dramatic. Communities reacted with dread because no one understood how or why people got it, and because children were the most frequently affected.
The first known polio outbreak in the United States was in Vermont in 1894. The last cases of wild (naturally occurring) polio in the United States was quite recently, in four states, among Amish residents who had refused vaccination.
Polio (also called infantile paralysis) was most often associated with children, but it affected teens and grown-ups as well http://tiny.cc/hBCPa. Between 1949 and 1954, 35 percent of those who contracted polio were adults.
"Many inspectors.... stationed themselves at railroad stations, ferries, and boat landings along the Delaware River .... to bar all children under 16 years of age who attempted to cross into Pennsylvania without certificates of health." Los Angeles Times - August 9, 1916
In 1916, New York City experienced the first large epidemic of polio, with over 9,000 cases and 2,343 deaths. The 1916 toll nationwide was 27,000 cases and 6,000 deaths. Epidemics worsened during the century. In 1952, a record 57,628 cases of polio were reported in the United States.

The fear of polio was a fear of something you had no defense against, something that hit without logic or reason. Yesterday, it was the man down the block. Today it could be you or your children.
—Larry Alexander, 1954
During a polio epidemic, individual rights often clashed with the need for public safety. Travel and commerce between affected cities were restricted. Public health officers imposed quarantines on homes where someone was diagnosed with polio. They required the affected person to be isolated in a hospital, often against the will of the parents or family. The same practices and conflicts are seen today where SARS (Severe Acute Respiratory Syndrome) breaks out.
"Unable to obtain a physician, he put the boy into an automobile and drove to the Smith Infirmary, but the child died on the way and the doctors at the hospital would not receive the body.... He drove around Staten Island with the boy's body for hours looking for some one who would receive it."
—New York Times, July 26, 1916



Parents outside of a hospital window trying to make contact with child in isolation ward
Polio produces no, or only minor symptoms in 95% of those infected. In about 5% of cases, a mild form results in flu-like symptoms of fever, stiff neck, nausea and fatigue, or a slight temporary paralysis. About 1% of those with polio symptoms experience a severe form called paralytic polio that has lasting effects. In the worst cases of paralytic polio, 2% to 5% of children and 10% to 20% of adults die. Humans are the only reservoir for the polio virus. The virus does not naturally reproduce in any other species.


Spinal Tap!
Lumbar puncture, or spinal tap, was introduced in 1891 as a way to relieve children with hydrocephalus (pressure on the brain from accumulation of fluid) and quickly began to be used as the primary way to diagnose polio.





"Well, it’s like this. This is the only real way we can tell what breathing you have left.... We find the amount of air you can blow into this counterbalanced floating cylinder with the gauge — that's all."
—Larry Alexander, 1954

Disability Rights Many people who had been injured by the polio virus became discouraged when they returned home and encountered environmental barriers and discrimination. Some were among the most eloquent and influential leaders of the disability rights movement. Their message has been that disability is a social and civil rights issue, not simply a medical problem.
Independent Living
"The goal [of independent living centers] need not necessarily be employment, but preparation and assistance to live in the larger community rather than in nursing homes or institutions.... In the early 1970s, the first independent living centers were organized in Berkeley, Houston, and Boston."
—Paul Longmore, 2003
"For centuries, disabled people had been locked up in state-owned or state-subsidized institutions. We will never know how many lives were wasted, how many intellects dulled, how many souls murdered, through that system. The people who began and ran this system were good people who thought of themselves as reformers helping the helpless. But they never asked us what we wanted."
—Mark O'Brien, 2003
"Before Mom found an opportunity to go down to the grade school office to register me, three members of the school board came to visit us .... 'It has been brought to my attention that you folks have a son in a wheelchair. It is our duty to inform you he will be unable to attend school....'"
—Don Kirkendall, 1973




Button from Disabled in Action, a cross-disability activist group founded in 1970 in New York City by Judy Heumann

"In 1968, Hugh Gallagher and Bartlett [Senator Bob Bartlett, D-Alaska] cooked up the Architectural Barriers Act which stated that all buildings 'designed, built, altered, or leased with Federal funds' would be required to have ramps, curb-cuts and access to all facilities. It was their radical view that accessibility was a basic civil right for all."
—Lorenzo Wilson Milam, 2004

Ron Mace was responsible for "An Illustrated Handbook of the Handicapped Section of the North Carolina State Building Code", the groundbreaking 1974 book that helped architects visualize and construct access ramps

"On April 5, 1977, disability rights activists occupied federal offices around the United States. They demanded implementation of Section 504 of the 1973 Rehabilitation Act ... that mandated 'No otherwise qualified handicapped individual ... shall ... be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.'"

Americans with Disabilities Act
Passed in 1990, the Americans with Disabilities Act, or ADA, is a landmark civil rights legislation that creates broad legal protections for people with disabilities.



Left: Justin Dart (far right) at the signing of the Americans with Disabilities Act by President George Bush, 1990



To be continued in the September 2008 issue

Clothing for Handicapped

<<<<< Here's a pair of slippers that are easy to put on

and a front fastening bra >>>>>

Interested? Go to www.silverts.com and click on "handicapped" at the bottom right of the page to have a look at their range!

Hehehe Corner

I don’t suffer from insanity. I enjoy every minute of it.

Fibromyalgia

Similar to PPS in many respects, it is important that we know the difference between the two conditions....... Ed

Symptoms

The primary symptoms of fibromyalgia include widespread musculoskeletal pain, severe fatigue, and disturbed sleep. Fibromyalgia means pain in the muscles, ligaments, and tendons – the soft fibrous tissues in the body.
Most patients with fibromyalgia say that they ache all over. Their muscles may feel like they were pulled or overworked. Sometimes fibromyalgia symptoms include muscle twitches and burning sensations. More women than men are afflicted with fibromyalgia, and it shows up in people of all ages. A conservative estimate of its prevalence is 2% of the general population, but it may be as high as 3-5%.
To help your family and friends relate to your fibromyalgia symptoms, have them think back to the last time they had a bad flu. Every muscle in their body shouted out in pain. In addition, they felt devoid of energy as though someone had unplugged their power supply. While the severity of symptoms fluctuates from person to person, fibromyalgia may resemble a post-viral state. This similarity is the reason experts believe that fibromyalgia syndrome (FMS) and chronic fatigue syndrome (CFS) may actually be the same condition. Gulf War syndrome also overlaps with FMS/CFS.

Common symptoms of fibromyalgia and chronic fatigue syndrome:

Hehehe Corner

On the other hand...... you have different fingers.

Cell Changes may help Lou Gerhig's Disease Research

Successful growth of motor neurons
From Barbara Gratzke
I just heard the news on NPR about this article... and went to the internet to look up the news release from the Science Journal. ALS has a different cause than PPS (duh!)... however, the end effect is the same because of the destruction of motor neurons (like polio did for us).... and this is the first sign of hope I have seen in years.... They started this research back in 2005, and it looks like they have had some success. This is the group that has also been working on the same research to help with Parkinson's and MS. HOORAY!!!... research is going in the right direction!
http://ap.google.com/article/ALeqM5iaD9-Bro8VFvKMq930oGwF8hnZegD928VUDG0

Meet Professor Mike Kossove

I grew up never knowing that I had polio. I have no recollection of being that sick except sometime between about 10 and 12 years of age. I do not remember being in a hospital or being disabled. I was a very active kid. I went to summer camp, played sports, was a catcher for the Police Athletic League Baseball Team, played soccer in college and was an avid tennis player most of my life. I owned or operated children's summer camps in the Catskill Mountains. I now have a country home three miles from one of the camps, and the site of the Woodstock Festival of the '60's.
I went to college and graduate school. I became a microbiologist, While in graduate school I studied virology under Dr. John Winsser, who was a team leader with Dr. Albert Sabin when they developed the oral polio vaccine. Needless to say, I knew everything about polio and the polio virus before I knew that I had polio. I received an appointment to the faculty of the New York Institute of Techbiology where I remained for 23 years. I was Assistant Director of the Center for Natural Sciences when I left to join the faculty of Touro College. I am still teaching. I teach Microbiology to Physician Assistant and Nursing Students, as well as undergraduate Microbiology. In total, I have taught for 41 years and yes, I still work.
During one class a student asked me about Post Polio Syndrome. I had never heard of it! Thus began my research into Polio and PPS. Before that I was researching microbial diseases of the eye. I visited the Brooklyn Polio Support Group and received my first education on PPS. At that meeting they asked me to talk about polio. The next week I received a call from the Long Island PPSG leader asking me to speak at that meeting. A week later I received another call from the Westchester PPSG leader and so my talk, Polio 101 was developed. Then the three Group Leaders wanted to have a conference. Through Touro College we had the first New York Conference on the Late Effects of Polio. After the conference, the college sent me to the National Polio Conference in St. Louis. There I met Group Leaders from across the country, and the speaking invitations just kept coming. I have spoken to numerous Polio Support Groups an at conferences across the U.S. Last April I was the emcee and opening Speaker at the International Polio Conference in Miami, sponsored by the Miami Polio Support Group and IPPSO. I am the Education Director of IPPSO.
I was in summer camp when I started experiencing ankle trouble, which I have had ever since I can remember. One day on the tennis court I partially damaged my Achilles and plantaris tendons. After six months of PT, I thought I was cured, but two years later I did it again just walking up a flight of steps. I told my orthopedist that my leg felt like I had PPS, and he told me I was associating my research with my problem. He was going to do surgery and fix it. After an MRI he called me in and told me that my ankle was inoperable, and if I thought I had PPS, he was referring me to an old timer who was a Physiatrist at a well known hospital in NY. During the consult, after the examination and looking at the MRI, he asked me how old I was when I had polio. I couldn't believe it! My Orthopedist prescribed an AFO, and after I got it, the pain went away. One February while speaking to the Boca Group, I visited my Aunt who was just short of 90. I asked her to remember way back. She told me that she was lucky that she could remember where her condo was! But when I asked her if I had polio when I was a kid, she remembered that yes, I did have polio, but she couldn't remember when. She said that the only way she remembered was that she saw a recent news broadcast on Polio and PPS and actually thought of me. As the PPS progressed I went into a full metal and leather KAFO in two years. It's almost uncanny that I began to research polio and speak to support groups, and now I am a survivor!
I had to limit my activities, but I still go to work without thinking about retirement. I still ride with the Volunteer Ambulance Service up here in the country (10 years) and back home in the city 45 years. I'm an EMT. I don't lift or go into the woods any more. I leave that to the younger members. I recently read a book by Daniel J. Wilson, "Living with Polio." When I finished it I was actually in tears, and I'm not a crier. It described what I missed, and I feel that I am the luckiest guy in the world. This brace is just a "little inconvenience."

Hehehe Corner

Apparently, Aliens don't eat clowns because they taste funny.

A Drug Has Been Developed.......

A drug has been developed to help stop the poliovirus from replicating and destroying nerve cells. The Capsid is the outer protein coat of the virus. When it enters the cell it has to uncoat (come apart) and allow the nucleic acid (the recipe for that poliovirus) to get to the cells protein factories, where they will assemble the ingredients from the nerve cell itself to make new viruses. A cell can make hundreds of new viruses. The cell usually is destroyed releasing the new viruses to attack other nerve cells. Remember, viruses are not alive. They do not reproduce like living cells do. They need living cells to make new viruses, and that's called replication. Of course, this will not help us, but it will stop polio from advancing in the body in third world nations where polio is still epidemic. Click on the website and read all about it.
http://www.medicalnewstoday.com/articles/109804.php

Cell Phones and Microwave Antennas

From Professor Mike Kossove
Be advised that cell phones use microwave antennas. Put to your ear over and over, day after day, could lead to memory loss and brain tumors. Although there is nothing definitive, there are studies. It will take 6 5-10+ years to really see the result of these studies. In the mean time, to talk with caution, use an ear piece. The microwave antenna is on the phone. It seems the ear piece is not a concern at this time.

It's also a concern in children, as children are using these phones at a young age, and the number one tumor in children is a brain tumor. Have a look at this web site for details. http://www.fda.gov/cellphones/qa.html#33a

Hehehe Corner

Time is what keeps things from happening all at once.

Recipes 4U

In the last issue of our magazine, I invited readers to send their favorite recipes to me for publication, but there hasn't been a single response so far. Is eating good food bad for PPS'ers??

10 Tips for Better Sleep

You may not be able to control or eliminate all the factors that interfere with your sleep, but you can create an environment and adopt habits that encourage a more restful night. Try these suggestions if you have trouble falling asleep or staying asleep:-

  1. Go to bed and get up at around the same time every day, even on the week-ends. Sticking to a schedule helps reinforce your body's sleep-wake cycle and can help you fall asleep better at night.
  2. Don't eat large amounts before bedtime. Also limit how much you drink before going to bed. Too much liquid can cause you to wake up repeatedly during the night for trips to the bathroom.
  3. Avoid nicotine, caffeine and alcohol in the evening. These are stimulants that can keep you awake. Avoid caffeine for at least eight hours before your planned bedtime. Although it is often believed to be a sedative, alcohol actually disrupts sleep.
  4. Exercise regularly, but always remember your PPS limitations. Regular physical activity can actually help you to fall asleep and result in more restful sleep.
  5. Make sure that your bedroom is cool, dark, quiet and comfortable. Create a room that is ideal for sleeping. Adjust the lighting, humidity and noise level to your preferences. If necessary, use dark curtains, eye covers, earplugs, extra blankets, a fan, a humidifier and other devices to create a restful environment.
  6. Rest during the day to help your PPS fatigue, but sleep primarily at night.
  7. Choose a comfortable mattress and pillow, and make sure that you have a bed that is comfortable. If you share a bed with your spouse, make certain that it is big enough for two.
  8. Start a relaxing bedtime routine. Do the same thing each night to tell your body that it is time to wind down. Taking a shower or a warm bath, reading book or listening to soothing music can help you to relax.
  9. Go to bed when you are tired and turn off the lights. If you don't fall asleep within about 15 or 20 minutes, get up and do something else to relax you.
  10. If you really must use sleeping pills, do so only as a last resort. Reduce the dosage gradually when you want to quit taking the pills, and never mix them with alcohol.

Hehehe Corner

Camping is Natures way of feeding mosquitoes.

Always Remember That.....

Things work out best for those who make the best way of the way that things work out

Post Polio Support Association of New Zealand Conference 2008

Information
Start Time: Friday, September 12, 2008 at 10:00am
End Time: Saturday, September 13, 2008 at 3:00pm
Location: Arena Community Centre and Rehab Unit at the Hospital
City/Town: Palmerston North, New Zealand
Contact Info Phone: 0800476546
Email: susanvrm@clear.net.nz

September 12th and 13th (Fri & Sat)
* Friday at the Arena Community Centre
* Saturday at the Rehabilitation Unit, Palmerston North Hospital.

Keynote Speakers
* Ms G. Jegasothy (Jega)
Senior Physiotherapist
Late Effects of Disability Clinic Neurosurgery Rehabilitation
Royal Perth Hospital
Shenton Park
Perth W.A.

* Dr John de Groot
Rehabilitation Centre PNDHB

* Mr. David Guest
Manager Information and Policy Enable NZ