Inspiration, news and knowledge from Polio Experience Network
No. 18: May/June, 1997
In This Issue:
Sharman’s News, Sharman Collins
“Grouse or Give – My Choice,” by Elinor Young
ACCESS Spokane – A new feature from Dave Graham
P.O.S. LIBRARY NEWS (Darlene Hansen)
“From the P.T.’s Mouth,” by Ed Snapp P.T.
“Making Changes,” by Sharman Collins
The P&I Link
“Thank You” & Subscription Information
Sharman’s News
…..Greetings from sunny Acapulco! My husband and I are here vacationing with three other couples. Shopping in the open market, exploring a Mexican village, jumping in the waves at the beach–what fun! How wonderful to be strong enough to join in the activities. I am so much stronger than I was eight months ago before I went to Futures Unlimited, Inc., in Columbus, Mississippi. Be sure to read the article in this issue that deals with the treatment at Futures.
…..Thank you to Dr. Brent Hoekema for driving all the way here from Lynden, Washington to speak to our group in April. Everyone benefited from hearing about his experiences coping with becoming disabled. His presentation was videotaped, so if you weren’t able to be there, you can check the tape out from our library.
…..Our meeting on May 27th will be a group discussion dealing with problems associated with post-polio syndrome. Topics such as pain control, proper pacing of activities, new treatments, social adjustment, etc., will be discussed.
…..On June 24th, our program centers around accessibility issues. Dave Graham will relate his experience with the new program, Access Spokane. Also on the program will be Wylie Marks from C.O.R.D. Coalition of Responsible Disabled.
…..In July, a local registered dietitian and nutrition coach, Craig T. Hunt, is scheduled to speak about principles of weight loss and nutrition. Craig will present new information about balancing our food intake enabling us to achieve permanent success in improving our health.
…..Our summer picnic will be on July 26th from 3:00 to 7:30 p.m. at Camp Caro in Spokane Valley. We look forward to great musical entertainment provided by Ron Haak and Dave Graham. Details about the picnic will be in the next newsletter. If you have any questions now, contact Dave at (509) 255-6131.
…..I am looking forward to seeing you at the meetings and our picnic. Meetings are at Shriners Hospital in the 5th floor auditorium at 6:00 p.m. Shriners is located at W. 911 5th Avenue. There is easy access from the free parking garage under the hospital. If you are able to join us for dinner in the cafeteria, please be there by 5:00 p.m.
Much love from your friend,
Sharman
Grouse or Give — My Choice
by Elinor Young
I wonder where this all began, this attitude that we deserve, are owed or have the right to a life unencumbered with tragedy, disease and disappointment. It is an issue that everyone who had polio runs into. If we didn’t think of it ourselves, someone else brought it up. I can’t count the number of times people have said, “You didn’t deserve that,” about my original polio and again about my post-polio condition. You mean I deserved not to get the disease and it’s caboose? What special merit do I have above anyone else? Who did deserve it? The virus was there, and was going to invade, not on some moral basis of deservedness or rights, but by route of physical susceptibility or — who knows? As for me, I’m not going to waste my energies grousing over whether I “deserved” this or not. All that leads to is anger, bitterness, despair and a bunch of other things that give people maybe heart disease and surely unhappiness. No, thank you.
So, what are the other choices? Ignore or deny? Those aren’t healthy alternatives, either. My choice … well, let me tell you a story that will explain it better.
During the time that I was a missionary in Irian Jaya, Indonesia, way back up in the interior mountains at Korupun, which is accessible only by single-engine airplane, helicopter or foot, there was an unusual up-surge of polio among the Kimyal tribe I worked with. Polio is endemic in Irian Jaya, and at that time there was no vaccine available for most of the tribes. In fact, they have only very basic medicine of any kind.
During this bad siege of polio, 3-yr.-old Meeyus was hit hard. I watched his paralyzed limbs partially recover, toes and fingers first, as mine had after I contracted polio at the age of five. Watching Meeyus mirror so many of my memories was uncanny. He, however, will have no hospital memories because there is no rehabilitation hospital or center available for him. When Meeyus’s parents brought him to me and asked, “Can’t you do for him what the doctors did for you when you got polio?” I had to tell them no, there were no doctors or therapists there who could give Meeyus the help I had received.
I described to Meeyus’s parents the physical therapy I had been given, simplified it to what they could do and impressed upon them that they must do what they could. Meeyus progressed from scooting along the muddy paths on his bottom to crawling on all fours, but there his progress stopped. At least he was somewhat more up out of the mud crawling rather than scooting. I hear that now, as a teen-ager, he gets around by sort of a hop-crawl. He has no braces, no wheelchair (nothing wheeled could negotiate those muddy, rocky mountain paths anyway) — none of the medical help and aids that I had and have.
So now, back to the “rights” question. Let me turn it around. Why am I so blessed as to have all of this medical help, relative ease of accessibility and conveniences that make life comfortable and easier, when most others in the world who have my disease, are not so fortunate? The positive inequities of life are no more my right or what I deserve than the negative ones are. Fussing over them is unproductive at best, destructive at worst.
I prefer to ask another question: “What do I do with what I’ve been given?” The answer to that is where I find joy, not bitterness; peace, not turmoil.
I believe that God did not give me these advantages to just hug to myself or to accept without passing along what I can to others in gratitude. They are a part of God’s love from which He says not even trouble or hardship can separate us. But his love isn’t just for me. I couldn’t stand not to pass it on. In Meeyus’s case, all I could pass on medically was the encouragement and advice I gave his parents. Indonesian and Irian Jaya politics and culture make it impossible for him to be taken anywhere else for help.
And in my own country and culture? The same medical advantages are there for anyone – at least theoretically. In some cases someone might need some help to access it; I can point them in the right direction. Another time someone needs a look at the right-side-up perspective of gratitude in place of the upside-down attitude of resentment. That is a treasure I must share.
You might say I’m hooked on the “high” of the joy there is in passing the love along. Through the prophet Isaiah, God explained to the Jews a wonderful principle. Though the examples are not exactly what I’m talking about, the principle certainly fits. He said, “…if you spend yourselves in behalf of the hungry and satisfy the needs of the oppressed, then your light will rise in the darkness, and your night will become like the noonday.” (Isaiah 58:10) Sure, my life has some darkness and some black nights. But I’m not going to spend my energy uselessly comparing my dark times with someone else’s. No! Instead, I want to spread the love, and turn the darkness to light and the night to noonday. Now, really — doesn’t that beat the alternative?
ACCESS Spokane
………………………………………………………………………..Written by Dave Graham with help from these organizations:
………………………………………………………………………..C.O.R.D. (Coalition of Responsible Disabled)
………………………………………………………………………..National Multiple Sclerosis Society
………………………………………………………………………..Easter Seals Society of Washington
………………………………………………………………………..Washington Assistive Technology Alliance
………………………………………………………………………..Spokane Transit
………………………………………………………………………..Polio Outreach of Spokane
………………………………………………………………………..Washington Governors Committee on Disability & Employment ………………………………………………………………………..Client Assistance Program
………………………………………………………………………..Senior Wellness
………………………………………………………………………..St. Luke’s Rehabilitation Institute
Early last month I was shopping at the Shopko store in the Spokane Valley. Being a disabled person I am keenly aware of store facilities and so was surprised to see a special restroom that Shopko had installed for my use. It was a large room that was separate from their other facilities. The floor had no obstructions and the room was clean and available.
This month Spokane Transit announced the purchase of twenty-five new busses. What pleases me is that these are state-of-the-art low-riders. They allow a person in a wheelchair to roll right on to the bus from the curb. Up to twenty percent of our population has mobility problems and will now be able to “leave the driving to the S.T.A.”
While wheeling through the Northtown Mall recently I had to appreciate the Evangel Book Center. They have placed their display racks in such a way that we can actually wheel into their store and shop! What a concept!
Nordstrom’s makes every effort to fit a persons feet with their shoes. If your feet are over one and a half sizes different, they will actually split a pair and not charge you for the second. While you are there be sure to buy something else.
Elinor writes: Kudos to the Bon Marche at Northtown Mall. Mom’s helper and I took Mom shopping in a wheelchair last month. The Bon’s accessible dressing rooms are wonderful. Wheelchair, Mom and helper all had plenty of room, making it easy and quick for helper to aid Mom in trying on several outfits. What could have been “a pain” was actually fun!
ACCESS Spokane wants you to know about the businesses, organizations, public facilities and events that are making an effort to improve accessibility to the disabled community. We make this positive information available in hopes that you will patronize these people.
Our community of mobility impaired people constitutes a ever-increasing segment of the population. We can have a large economic impact if properly directed.
If you know of a special service or improvement that could benefit the disabled, we want to hear from you. Please take a moment and write to us at…
508 Shoreline Drive – Liberty Lake, WA 99019
Regular meetings of ACCESS Spokane are open to the public. If you are interested in attending call (509) 255-6131 for details.
Polio Outreach of Spokane Library
Your resource for information on post-polio syndrome and disability issues.
Our new librarian is Darlene Hansen. She writes:
To assist you in the quest for understanding, we have been sorting and cataloging our resource material. The latest count of printed articles is 210+ spread over 15 different topics. Yet to be filed are our books, video and audio tapes and general packets. We hope to complete this project and have an up-dated library guide for you in the near future. Our goal is to make it available to you as an encouragement, for support and means of education for you and your care givers.
Here are two excellent articles that I have chosen to highlight this month.
“Polio in perspective for 1995,“ written by Mary Clarke Atwood reporting on the Dr. Jacquelin Perry speech at a 1994 Rancho Los Amigos, Post-polio support group meeting. Is excellent in discussing necessary life-style modification, tips for saving your shoulders, exercise guidelines, what we can do/and some cautions.
“Pain Packet,” a compilation of articles helping us identify our pain and a listing of at least five different methods of pain management distributed by the National Chronic Pain Outreach Association in Bethesda, MD.
Please direct all requests to:
DARLENE HANSEN
From the P.T.’s Mouth
Since August, 1996, six members of Polio Outreach of Spokane have had treatment at Futures Unlimited, Inc. in Columbus, MS. When other people see the results, they want to know more about it. We have printed some testimonials, but thought that you might want to hear it from the P.T.’s mouth, so to speak. The P.T. being Mr. Ed Snapp, who established and heads the clinic. What follows is exerpted from two articles written by Mr. Snapp:
ACUTE ANTERIOR POLIOMYELITIS, SOME OBSERVATIONS,
By EDWARD SNAPP R.P.T.
INTRODUCTION
I have had the opportunity to work with thousands of patients with polio during the epidemics in the late 1940’s and 1950’s. I followed many of these people through years of rehabilitative efforts. In recent years, I have again come in contact with a number of these patients and have observed the development of this latent complex of symptoms and disabilities called post polio syndrome.
BACKGROUND
Polio was annually epidemic in the United States in the 1940’s and 50’s, until the Salk and Sabin vaccines. During those years, I was first a survivor of the disease and second, a physical therapist in charge of the Polio and Rehabilitation Center in Houston, Texas.
Polio was famous for its “scattered” involvement. We became aware of many similarities in our patients. Total extremities were frequently involved and rotation patterns were often seen. There were other correlated dysfunctions which appeared to be scattered paralysis and frequently intractable contractures. This research took place around the time the polio epidemic ended. With the discovery of the Salk and Sabin Vaccines, the interest in polio ended. Therefore, nothing was published and further research was discouraged. Hence, the post polio syndrome epidemic was far advanced before medical science acknowledged its existence.
POST POLIO SYNDROME
It has become obvious that a significant percentage of nervous system dysfunctions result from an apparent “deprogramming” of specific portions of the central nervous system memory. This appears to be due to a reaction to either physical or chemical shock. “Deprogramming” is very like the reaction when a computer’s power plug is inadvertently disconnected. The machine and its circuits remain intact and undamaged, but the program is lost. For the program to be reinstated, it must be returned to the proper file from which it was lost, or it cannot be retrieved or accessed. It is possible, indeed likely, that a considerable amount of paralysis from polio is the result of this type of mechanism. It is also likely that continued stress and chronic severe fatigue produces similar trauma, causing post polio syndrome. If this is true, there is a possible avenue to reinstate function, at least to the segments that were functioning before the onset of post polio syndrome. In addition, there is a possibility of reinstating function in some of the previously involved areas affected by the initial disease process.
Since 1989, we have used a very comprehensive treatment program for patients with post polio syndrome. The response of our patients has been more than gratifying. The treatment regime is based on the concept that multiple factors affect progressive pain and weakness. To be truly effective, it appears necessary to address all these factors simultaneously. Present indications are that the treatment format may both stop the immediate progression of post polio syndrome and simultaneously improves strength, range of motion, endurance and comfort in a high percentage of patients with post polio syndrome. The methods and modalities used are all basic physical therapy procedures, but the programs must be individually structured for both clinical and home use.
In an earlier report,1 Mr. Snapp explained,
“Every movement, massage technique and sensory factor is controlled in sequence, intensity and area of application. Environmental factors eliminate extraneous and distracting stimuli and more importantly, specifically enhance each relearning process. Gains in strength, endurance, coordination and the elimination of pain are related to reactions of the nervous system rather than active resistive or repetitive exercise.
“There is no hypnosis, psychological counseling, meditation, medication, resistive exercise or practice involved in the treatment format. There is no special diet, nothing to be believed in, attended to or thought about. The treatment modes are passive and best carried out while you relax.”
“In areas where muscle function is present spasticity is reduced without medication or electrical stimulation. Range of motion is increased without enforced stretching. Coordination is improved without practice. Muscle tone and muscle bulk is frequently increased without resistive exercise. Strength and endurance are frequently increased without resistive exercise.”
“Home programs are simple and do not require personnel who are technically trained or who have special abilities. Equipment required for home program activity is minimal and very inexpensive.”1
Patients who completed two weeks or more of therapy, have maintained improved function…
CONCLUSION
All patients report increased energy, less fatigue, and faster recovery from fatigue. Incidences of post-treatment pain were caused by exceeding home program guidelines. Each occurrence was corrected without medication by following advice given in telephone consultation. Most patients reported additional improvement of function after discharge from clinical treatment. Some patients have reported the ability to contract muscles which have not functioned for years, including some that had not been active since the acute disease period.
There have been:
- No negative reactions from treatment
- No sustained fatigue
- No increased weakness
- No increased pain.
Those of us who have had the privilege of working with these patients are pleased and excited by the results observed to date. We are continuing to make every effort to improve the effectiveness of our treatment methods, to enhance post treatment home programs, to preserve and increase improvements and to provide consultation which may be of value in maintaining the best quality of life possible. _______________________ For Further Information Contact: Ed Snapp PT Futures Unlimited Inc., 190 Lehmberg Rd., Columbus MS 39702 – Phone (601) 327-7333
Footnote: 1. “Futures Unlimited” (a report after the first two years), Edward Snapp, P.T. 1993
Making Changes
by Sharman Collins
Over the last six years my life has changed dramatically. My diagnosis of post-polio syndrome in January of 1991 ushered in a time of rapid decline and loss of physical function. From an active and strong, capable mother-of-four, I slipped down a steep slide of deterioration. By the Spring of 1996, I was becoming increasingly weak and injury prone. A climb up a few stairs was enough to put me in bed for days with severe pain and fatigue. The walls erected around my life by my physical limitations crept closer and closer together.
During these years, you have shared with me the story of my post-polio. That story included my adjustment to using a scooter, bi-PAP, back brace, the impact on my family and social relationships, and my spiritual search for meaning in all of this.
At times during the first year of my physical demise, I inched toward severe depression. It was then that the Lord reached down to me and pulled me up towards Him. I learned that only if I trusted Him completely and gave Him the reins of my life could I survive. He has enabled me to live with a joy grounded in Him and not in my physical self.
In the summer of 1996, I felt I really had little choice but to try every treatment option available. I traveled to FUTURES UNLIMITED, INC., in Columbus, Mississippi, in August for a two week treatment developed by Ed Snapp, P.T. As most of you know, I have experienced a phenomenal return of physical strength and function. I returned to FUTURES for another course of therapy in February. Once again, the treatment was of great benefit.
The walls around my life imposed by post-polio syndrome are crumbling down. I have been able to resume a much more “active” lifestyle. Post-polio syndrome continues to dictate the intensity of my activities, but the scope of what I am able to do has increased dramatically. Cooking, sewing, knitting, walking, swimming, shopping, talking, sitting–all these activities are mine once again!
What excitement I feel as I walk up and down the aisles of the grocery store deciding what to prepare for dinner! How thankful I am to be able to perform these “normal” activities. I am able to spend much more time with my beloved husband and sons and daughters-in-law. And I am looking forward to holding my first grandchild in my arms–born April 16. My heart bursts with joy and gratitude!
Dealing with other’s perceptions of my “normality” is once again difficult now that I no longer have the “props” of disability. Explanations of muscle weakness and short endurance are not easy for those with little knowledge of post-polio syndrome to understand. Attempting to live up to other’s expectations for my behavior is futile. My choice of attitude is one of gratitude that I am able to do anything at all. I do not have to let fear of physical loss control me.
How long will this new-found strength and endurance last? I am not in control of that. I can have a sense of peace because I know that God is in control. He has a plan for my life–and if that plan includes a return to my previous state of ever-increasing weakness–He will give me the emotional and spiritual strength to accept my circumstance. I can trust Him to help me to cope with the situation as it arises.
P.E.N. & ink Link … a link with each other
Friends write: “I don’t have post-polio, but am quite disabled with pain… I can identify with many of the articles in your newsletter. I especially enjoy the articles written by Sharman, Dave and Elinor. …I laughed the other day when I read how Dave limped when he encountered able-bodied people in the parking lot. I have done the same thing, because I know I look healthy to people who don’t know me. They don’t know how glad I am to have tinted windows on my van, because I have to lie down and rest many times, before I can even drive the few blocks to my house.” -A.— Let’s hear from other non-PPSers who get P.E.N. & ink. Are we helping, or not?
“Thank you for all the years of receiving the newsletter when I haven’t contributed. I will be more regular in the future, that others might receive who can’t afford it.” – W.
“Hello – I am asking AGAIN that I find no more of your ‘Polio Experience’ mailings in my mailbox as I do find it all quite dampening. Personally I do not embrace that 1950s experience & I like/prefer to think of more positive and timely matters /things.”A.
“We are blessed by P.E.N. & ink. It seems your support group is the way it should be… very supportive!” — D.
— Thanks, D! We needed that…
“Thanks for your help and information during the past year. I am moving out of State in May. Please remove my name” – D.
–OK, but LOTS of people outside of Washington State receive P.E.N. & ink. Even people outside North America! You needn’t leave the P&I group when you move.
“How much we appreciate P.E.N. & ink. We share it with others. One of our post-polio friends is investigating Futures Unlimited, because of Sharmans’ and Elinor’s experiences. Wonderful news for both of them.” – J.
–You and others like you are performing a great service to your post-polio friends. Send us their names and addresses and we will send them their own copies of P&I.
Equipment Available:
Evi, (509)326-3234, has all kinds of free equipment. From hi-johns to shower chairs to canes to wrist and ankle braces — just ask her; Evi may have it!
A huge thank you
to all who responded to our request for voluntary donations last issue. In response, we received 1/3 of what we need for the next 6 issues (one year) of P.E.N. & ink! You forgot? Here’s another chance! If you are unable to donate, that’s OK; we’ll keep mailing to you as long as we have funds to do so. Whether you can donate or not, if you didn’t do so before, please fill in and mail this form to: Polio Experience Network – 508 Shoreline Dr., Liberty Lake, WA 99019. Name _____________________________Address_______________________________Zip___________
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