POLIO SURVIVORS SUPPORT GROUP

OF WESTERN NEW YORK

56 WOODLEE LANE

GRAND ISLAND, NY  14072

 

 

 

 

THE NEXT MEETING OF THE POLIO SURVIVORS SUPPORT GROUP OF WNY WILL BE HELD AT ST. LUKES LUTHERAN CHURCH, 900 MARYVALE DR. AT UNION ROAD ON WEDNESDAY, JUNE 20thAT 7:15 PM.

 

 


Hi Everyone,

 

Those present at the March 20th meeting were: Don O’Connor, Susan Calvaneso, Henry Maciejewski., Pat Doeing, Bill and Barbara Woodworth, Bud and Susie Foster, Ed Lillis, Linda Lyons and Joan and Gus Arndt.

 

The guest speaker for this meeting was Richard S. Cimbalo, hypnotherapist. He discussed hypnosis and biofeedback as alternatives or supplements to drug therapy to relieve pain and depression.  He also brought along some bio-feedback equipment that he has been using for 20 years in his practice. The electronic equipment picks up tension in any muscle. It also works with pain and stress. People using this equipment control their pain, unlike drugs which control you. Another unit Mr. Cimbalo brought was a machine which measures temperature of blood . Some people can raise the temperature of their hands and fingertips in 5 minutes as the person is interacting with the machine. Gus Arndt volunteered to be hooked up to the thermo machine and you could see that his blood temperature was rising. Even people with migraine headaches should be able to control the blood flow out of their head.

 

At the March 20th meeting, Henry Maciejewski mentioned that he has been the treasurer of this group for 14 years and would now like to step down and have someone else take over. We had a vote and Clarice (Susie) Foster was nominated and Bill Woodwirth seconded So, from now on your dues can be sent to Susie Foster, 74 Marilyn Dr., Cheektowaga, NY  14225.  Susie and Bud Foster’s e-mail address is: budfoster38@hotmail.com. We would all like to thank Henry for his long and dedicated service to the Post Polio Support Group of WNY as our treasurer.

 

NOTE:  As was mentioned in our March newsletter, this will be the last newsletter going out to the 300 plus people on our list. It has become too expensive to mail these out as the postal rates are increasing. If you haven’t paid your $10.00 dues for the year 2001, and have not contacted President Donald O’Connor with a post card or letter, explaining that you cannot afford to pay the dues but want to continue to receive the mailings, this newsletter will discontinue.  Don’s address is: 56 Woodlee Lane, Grand Island, NY  14072.  You may still access the newsletter on e-mail. Again, the newsletters current, and dating back several years are posted at: Disabilities Forum   or go direct to: handicap.bfn.org/public/polio.html Post-Polio Newsletters.

 

Don O’Connor was a reviewer for a book called “POST-POLIO SYNDROME” A Guide for Patients and Their Families, by Julie K. Silver, M.D., published May 22, 2001 by Yale University Press, New Haven, Connecticut. Price, $27.50.

 

Book Review by Don O’Connor for Polio Survivors Support Group of WNY June 2001 Newsletter:

 

I would like to have found this book lacking in some respect, because then I could have written a really funny review panning the author's deficiencies.I could flail away at the illustrations, which are not very helpful (including one of a young lady demonstrating a comfortable position for sexual relations), but the simple truth is that the book is superb.   Those of you who know me well can confirm that I am a child of the Great Depression and not one to spend money frivolously.  Therefore, the following true story will demonstrate the height of my regard for Dr. Silver's book.

 

I have had to find a new general practice doctor because the one I had moved out of town.  I had read about two thirds of the book's 304 pages when I arrived for the first time at the office of the new man who is quite young (They all seem to be young lately).  I was pleased to learn that he had been exposed to the word Polio in med school and was somewhat familiar with Post-Polio Syndrome.  Nevertheless, I thought, after talking with him for about twenty minutes that if he was going to be looking after my good health he should know how my well-being depends on his understanding of how Polio continues to affect me.  I exacted his promise to read Dr. Silver's book ,then when I was back home I fired up my computer and ordered a copy from Amazon. com to be sent to him.

 

Dr. Silver came honestly by her expertise as a Polio doctor.  She is a Physiatrist, an Assistant Professor at Harvard Medical School, on the staff at Massachusetts General Hospital, and the Medical Director of a Polio Clinic at Framingham, Massachusetts.  She is the daughter, granddaughter, and niece of polio survivors and she honed her skills as an assistant to the Dean of Polio researchers, Laura Halstead, M.D.

 

While the book is organized so that you can go directly to a chapter that deals with a specific symptom or remedy that may worry you, I recommend that you start with the foreword by Dr. Halstead and read it through like a novel.  It is written in layman's language and will more than likely inform you about health hazards you never suspected.  Several times in her book, Dr. Silver demonstrated her hope that her readers read the entire book, not just the chapters that deal with their immediate concerns.  For instance, in the chapter dealing with respiratory problems, she wrote the following:  "...Before you skip over this chapter because you breathe well and assume you have no respiratory problems, bear in mind that respiratory conditions may be subtle, may not have to do with breathing when you are awake, and may have nothing to do with whether you had respiratory problems during the initial polio episode." She then goes on to demonstrate how nocturnal breathing disorders can rob one of needed rest and make it more difficult to make it through the day.

 

The book has the obligatory chapter that describes Polio, its history, the Epidemics, and the vaccines.  So, also, is there a chapter describing Post-Polio Syndrome and how it gained belated recognition in the medical community.  There is a chapter about how to find a "Polio Doctor", which is interesting and informative, but after fifteen years' association with our support group the surest way to get a first rate "Polio Doctor" would be to move to Framingham, Massachusetts.

 

 Dr. Silver deals with each of the conditions and symptoms that we may have, and she describes the treatment options and adjustments we can make in our lives to conserve our energy and function.  While she discusses medicine and surgery as well as bracing and assistive devices, she also deals with home and office modification. There is even a chapter on complimentary and alternative medicine.  (Tai Chi, Acupuncture, magnets, light massage-all of which she says are o.k. if you find them helpful-and chiropractic manipulation or heavy massage, which she warns against.)  I found particularly useful the chapter on how to finance the treatment and assistive options, as well as how to obtain disability benefits. I'm not going to violate this lady's copyright and tell you everything you will find in the book.  Just get yourself a copy and enjoy!

 

Now, Some Polio Network News - General Information letter for Polio Survivors:  Why are “old polios” who were stable for years now losing function?  What should they do about it?  By Jacquelin Perry, MD, DSc (Hon), Rancho Los Amigos National Rehabilitation Center, Downey, CA.

The basic problem is that polio destroyed some of the nerve cells that activate the muscles.  To the extent possible, the neurological system responded by having the remaining nerves adopt the muscle fibers that had lost their original nerve supply. This meant that nerve cells now had a demand much greater than normal. While this was an effective solution initially, the passage of time (30+ years, usually) has taught us that overuse can be destructive. As a result, these secondary nerves are wearing out with resulting muscle loss, i.e., post-polio syndrome.

Post-polio muscle strength is commonly over estimated as the usual test depends on manual resistance by the examiner. In addition, polio survivors mask their disability by clever use of their normal control and normal position sense to substitute for missing musculature.

The apparent abrupt loss in function relates to two functions. One is the buffer zone present in all of our physiological systems which enables them to accept strain for a considerable time, but once the buffer limits are exceeded, the loss is very prominent. Secondly, activities such as walking or lifting objects present fixed mechanical demands. As long as the person’s muscle strength exceeds that demand, he/she can continue to perform as usual but with earlier fatigue. When the strength goes below the essential limit, suddenly that function is lost.

Recent research on the course of muscle strength over time in persons over age 50 years showed a normal average decline of 1% per year, but for post-polio survivors the rate was 2% per year. The rate of change is so subtle that a four-year study was needed for a measurable change. Also, the weaker “polios” experienced greater functional loss. The latter fact appeared to indicate strength training by exercise would deter the process. However, retesting this group of polio survivors at eight years and adding muscle analysis told a different story. The muscle fibers were hypertrophied, twice normal size, not atrophic. The person with the greatest strength loss also had the greatest hypertrophy. MRI recordings showed areas of muscle loss and fatty replacement. The source of the visible muscle atrophy is muscle fiber loss secondary to nerve fiber overuse failure. These findings confirm the need for a saving program rather than challenging exercise.

            The advantage of having had polio rather than another disability is that it allowed one to resume a very active and profitable life for many years. Now it is necessary to recognize that excessive strain was being experienced and that lifestyles must be changed to accommodate this situation.

            Be an “intelligent Hypochondriac”- Listen to your body and adopt a program that avoids the strain.


PLEASE NOTIFY US IF YOU CHANGE YOUR ADDRESS

At the June meeting, we will order pizza, and if anyone would like to bring something to contribute, it would be much appreciated. The summer picnic this year will be at the Hatch Restaurant at Erie Basin Marina downtown on Wednesday, July 18th at 4:00 p.m. See you there.

 

If anyone has anything  -- news, information, etc. that they would like to be put into the next newsletter, please contact me by e-mail. NOTE CHANGE. scalvaneso@hotmail.com, and I would be happy to insert it. Please expect the next newsletter somewhere around the beginning of September 2001.

 

Susan M. Calvaneso

Recording Secretary

June 4, 2001