Inspiration, news and knowledge from Polio Experience Network
No. 7: July – August, 1998
In This Issue:
Sharman’s News, Sharman Collins
“You Don’t Look Sick” (by Elinor Young and Alex Looms)
Just the FAQs (by Dave Graham)
“Will the Real Sharman Collins Please Stand Up?”
The P.E.N. & ink LINK
Computer Connections
POS Library (by Linda Scott)
Share-A-Ride
Phone Pals
Copyright Information
Sharman’s News
from Sharman Collins
GREETINGS!
…..We had a birthday celebration for Spokane Polio Outreach at our June meeting. The support group is four years old!
…..Congratulations and thank you to all those people who have attended regularly and have offered loving support and friendship to everyone.
…..When our group first began to meet, attendance was about twenty people. Now, we usually average fifty!
…..Our summer meetings are off to a great start! On July 25, Nancy Lee, president of the Inland Massage and Body Workers Association, and several of her fellow therapists will talk to us about the benefits of massage therapy. They need volunteers for demonstrations!
…..On August 22nd we will have a large/small group discussion.
…..Alex and Ann Looms have graciously volunteered their home for our Fall start-up picnic on September 16!
…..Dr. Sam Joseph, our guest speaker on September 26, is a pulmonary specialist from Rockwood Clinic and his discussion will center around possible respiratory problems in persons who have had polio.
…..Colorado Easter Seal Society is sponsoring its fourth Educational Conference on September 8 – 10. This year’s theme is “Post-Polio Syndrome — Aging with a Disability.” The keynote speaker, Margaret L. Campbell, Ph.D., is the research director for the Rehabilition Research and Training Center on Aging with Disabiliity at the Rancho Los Amigos Medical Center. The conference concludes with Hugh Gregory Gallagher, author of “FDR’s Splendid Deception.” I encourage you to consider attending this conference. I have been to two conferences in Denver and they were educational and a lot of fun! The camaraderie alone makes this conference well worth the physical exertion, time, and expense! If you would like more information, contact Colorado Easter Seal Society at 303-267-1666 or 1-800-875-4732 and ask for Julie Beems or Linda Smeltzer. We would love to have many representatives there!
…..For those who haven’t been to a recent support group meeting, we meet in the Shriner’s Hospital at 6:30 p.m. If you would like to join us for dinner in the cafeteria, please arrive by 5:00 pm. The meeting room will be open by 6:00 and the library will be available for browsing. Don’t forget about our great door prizes! We have a lot of fun. I am looking forward to seeing you on July 25!
Lots of love to all of you,
Sharman
“You Don’t Look Sick“
A question at support group spawned this E-mail exchange.
Dear Alex,
At the last discussion meeting, you said something about how confusing it is for friends to see you in a scooter. You look as “normal” as they do! How, you wondered, do you convince them you’re for real? I’ve got an idea for you. An idea gleaned from my years with the Kimyal tribe of Irian Jaya, Indonesia.
The Kimyals live in the remote interior of the island, high in the rugged Snow Mountain range. Life for them is rugged, too. They live in small round thatch roof huts, grow sweet potatoes and raise pigs. In fact, pigs are money: a man needs them to buy wives, gardens and other necessities. Pigs spend the night in the women’s huts so someone can keep a fire going all night to keep this “savings account” from getting cold and sick. Kimyals consider sickness in humans as bad, but in pigs it’s a disaster.
I lived in a mountain-cabin, “Western-style” house, and no, no pigs lived with me! Even so, I fell prey to all the normal tropical diseases plus some. I got little sympathy from the Kimyals, though, and sometimes wondered why.
Toward the end of my years there, I had been having heart palpitations and bouts of tachycardia. No big deal, I thought. Then one morning my heart started racing 200-plus beats a minute and I couldn’t get it stopped. I knew this episode was different. Each beat was so violent that I could literally see my chest pound. My colleague was a nurse, but she was on another island for vacation. And weather was bad, so I couldn’t call a plane in to our single-engine size gravel airstrip to take me to medical help.
After 14 hours I talked to a missionary doctor by radio. He suggested the normal methods for getting my heart to stop racing. But neither his suggestions or any methods I had used in the past worked. At 18 hours I knew I was in danger; I was getting weak and wanting to give up.
I prayed one of those Peter-sinking-into-the-water “Lord help!” kind of prayers. I simply said, “I’m running out of time. Neither Dr. Ken’s suggestions nor my usual methods have worked. I’m going to lie down and try again. Please put into my mind what to do.” I did, and He did. I filled my lungs and used my chest muscles to press my heart against my ribs as hard as I could for as long as I could hold my breath. After I started breathing again, my heart stopped racing, but almost stopped altogether. It reluctantly, laboriously lumbered along for a minute or two, then settled into regular rhythm. And I began to hurt.
The pain was incredible. I knew my heart and chest muscles were bruised, and my heart was very tired. Consciously willing each leg toward the kitchen I cooked an “Impossible Quiche.” It was the weekend, so the gal who cooked for me during the week wouldn’t be coming. I knew I had to eat to give my body strength, but I also knew I did not have in me the ability to cook more than one thing. I lived on the quiche and powdered milk for three days while I laid back in my “big” chair and cried.
I cried because of the pain, because of the weakness, because of relief that I was alive, because I didn’t know why and because of fear. What did this mean? It wasn’t just my heart — my whole central nervous system felt like it was falling apart.
As they always did, my Kimyal friends frequently dropped in to visit or check up on me. I told them I was not well. Their response was a shrugged shoulder or a soft chuckle as if I’d told a joke. Finally, Sa’ale told me, “Sick! You don’t look sick! At least when we are sick we look like it. Our hair looks sick, our face looks sick, our skin looks sick — you don’t look sick!“
He was right. The Kimyals make sure they look sick when they are. They smear their hair, faces and chests with pig grease and black ashes and, if they have one, put a dirty rag over their heads for good measure. Then they walk with a slouch and put on a long, long face. Everyone knows they are sick. No doubt about it.
As you can imagine, only ten months after that incident I had to leave Irian Jaya. My body had totally “crashed” with PPS. That was 1991. I went through a rapid decline which has now slowed way down. Friends who have been with me through this are so delighted about how well I am now. They’ll say, “It’s so good to see you looking so well!” They’re geniune. But every once in awhile I still see an old friend for the first time since PPS who, as I smile from my scooter, says, “My! You’re looking good!” Their confused expression and forced smile implies, “I thought you are supposed to be sick…”
We’re not sick, but how to prove we’re not joking? There’s only one answer. Bring our the pig grease and ashes. Find a dirty rag for good measure, and don’t forget to practice a long face.
Good luck Alex! Elinor
– – – – – –
Hey Elinor,
I think your story was wonderful. A great idea for all of us. In fact it really got me fired up! Although we were not planning any out-of-town trips for the Memorial Day holiday, we did have several local social outings planned.
With our large family, rags are easy to come up with — the kids can turn any item of clothing into rags with amazing speed. Rags were not a problem! Black ash had me a bit confused. My bride, Ann, accused me of being too obsessive. Heck, ashes come in colors from off white to charcoal. After considerable fretting, I chose ash from the barbecue. Besides, we were going to more than one place so I could adjust for that just-right “sick” look. But pig grease!!!! Now that was a tough one! Living “out in the sticks” like we do here in North Idaho, I figured it would be easy. Well it wasn’t.
Apparentrly we live in a more depressed neighborhood than I thought — nobody owned any pigs. We may have to move and get a pig of our own. Although, I’m not sure how much energy I’d have to exert to squeeze out the pig grease. Just in the nick of time I thought, “4H — finally pig grease!!”
I applied a liberal coat of everything — could one look too sick?? I even gave my scooter a dash of ash for effect. Well, as I’m sure you can imagine, everywhere I went people said, “YOU’RE SICK!!!” I guess that was the effect we’re looking for. But from their tone of voice I’m still a bit confused about what kind of sick they meant.
I must admit that, although fatigued, after a shower I “felt better.”
Bye for now, hugs, Alex
Just The FAQs
Frequently Asked Questions about Post-Polio Syndrome
by Dave Graham
#1 How do I know I have Post-Polio Syndrome?
The diagnosis is one of exclusion. Other conditions that have similar symptoms must be ruled out. These include Fibromyalgia, M.S., Myasthenia Gravis, ALS (Lou Gehrig’s Disease), Parkinson’s, tumor, etc. Having Post-Polio Syndrome does not rule out the possibility of also having another disease though. A physiatrist or neurologist familiar with PPS can perform appropriate diagnostic tests.
#2 My regular doctor doesn’t have a clue about PPS…. who do I see?
The library of Polio Outreach of Spokane is a wonderful resource. In it you will find a list of local specialists. The Easter Seals Society also publishes such a list.
#3 Am I going to die from PPS?
Everyone’s going to die someday, but not from Post-Polio Syndrome.
#4 What About Social Security and disability insurance companies?
Again, the support group is the place to go for this information. Many people can offer their experiences and the library has some great articles on the topic.
#5 What changes can I expect?
As you experience decreased strength, energy, and function, and a higher level of pain, you can expect to have to make some lifestyle changes. You may also confront some of the other common PPS symptoms (twitching, “tired brain,” etc.) However, just as the severity of symptoms varies, so also the number and magnitude of lifestyle changes differs from person to person. The Polio Outreach library can give you more specifics. Dr. Mavis J. Matheson, MD, says, “The way we see ourselves may interfere with our ability to change. One approach to the whole issue of activity is to be kind, positive, and gentle to ourselves.”
Will the Real Sharman Collins Please Stand Up?
by Sharman Collins
Dealing with post-polio syndrome forces me to reexamine my definition of who I am. The quality of my day used to depend on how manny “tasks” I had accomplished. It was a “good” day if the house was clean, a gourmet dinner was on the table, and there were cookies in the cupboard. I also expected to be able to ride my bike at least 20 miles daily and liift weights for an hour three times a week. Plus, my grand piano waited for me every day between 4:00 and 5:00. And, in the evening, I would “watch” TV with my family while I busily knitted sweaters and sewed my own clothing. I loved being involved with the activities of my athletic husband and four sons. My identity revolved around what I could do and how well I could do it.
Self-esteem. Quality of life. Buzzwords of the 90’s. What happened to my self-esteem and quality of life when all these “accomplishments” and “activities” were ripped from my life by post-polio? My yardstick by which I measured my “worth” was broken to pieces.
Wave after wave of agonizing “giving-up” of loved hobbies, sports, and activities left me feeling empty and barren. Eventually, I found new avenues of expression and productivity. Not based so much on doing, but on being. My faith that the Lord’s plan is to use me in some way to exhibit his strength even in my weakness keeps me reaching out to grasp what life offers.
Having post-polio, I don’t know what new physical problems I am going to have to cope with next. Losing the ability to ride a bike or to ski is a loss. But, losing the ability to walk, sit-up, stay alert, and breathe sufficiently on one’s own are catastrophic occurrences that demand total dependence on the Lord’s control and will. I can trust that He is in charge and, in some way, He will use my life to serve His purposes. I can still be productive. But, it is His definition of productive, not society’s and not always mine. The Lord knows who the real me is, even when I don’t.
“But blessed is the man who trusts in the Lord, whose confidence is in him, He will be like a tree planted by the water that sends our its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.” (Jeremiah 17:7-8)
P.E.N. & ink Link
Do you have a question, a need, an answer or a gadget? Phone Elinor (509) 238-4812 or write P& I Link, N. 24104 Jim Hill Rd., Chattaroy, WA 99003
FREE! Two sets of twin-size extra long bed sheets. One blue, one white. This size fits electronic beds. Call (509) 238-4812.
A friend told me last week that he had seen an ad in the Wheel Deals for a wheelchair-lift equipped van. Rebuilt motor, just $5,000. If some of you are needing such a van at such a price, call me. If you don’t need one but see one advertised let me know so I can pass on the info. These are hot-moving items so don’t delay.
Polio Outreach of Spokane maintains an extensive library of materials on Post-Polio Syndrome and associated topics. Linda Scott keeps it up to date with the latest materials. She makes these available to you at regular support group meetings and by mail.
New in the Library
HEALING THE BLUES: Drug-free psychotherapy for depression. An account by a patient (a polio survivor with PPS) and her therapist, Dorothea Nudelman and David Willingham, MSW. This is a good read whether you feel depression is a part fo your life or not.
Handouts by Mail
BOUNCING BACK WITHOUT GUILT, by Wendy Cline, PhD. The text of the audio cassette in our library. She discusses PPS as a second disability and how to deal with it. [An electronic copy may be found at http://www.eskimo.com/~dempt/bounce/.]
ELDEPRYL AND ANTIDEPRESSANT INTERACTION New info regarding this popular drug for PP’s. A must for all PP’s taking Eldepryl.
NEUROMUSCULAR EXERCISE PROGRAM, courtesy of Vivian Moise, MD.
10 MINUTE STRETCHING ROUTINE. Pictures and text. Very adaptable to PP’s individual needs.
BLADDER/INCONTINENCE PACKET, causes, definitions, treatments. Good basic info for anyone experiencing this problem even if minimal
Articles that have been listed in past issues continue to be available.
Contact Linda Scott
1320 N. Hollis Spokane, WA 99201
Computer Connections
There is an active Post-Polio mailing list that can be joined by sending E-Mial to listserv@sjuvm.stjohns.edu. With a blank subject line write: Subscribe Polio yourfirstname yourlastname. You will receive E-mail from Polio Survivors all over the world. It’s free!
There is an excellent free reference area that can be accessed via World Wide Web or lynx at:
http://www.eskimo.com/~dempt/polio/l
America On-Line has a disABIITIES forum and a Post-Polio chat room on Tuesday nights.
OTHERS OF INTEREST
Dr. Lauro Halstead – National Institute of Rehabilitation in Wash. DC – PostPolio@aol.com
Tom Dempsey – World Wide Web Post Polio Page – dempt@eskimo.com
Tom Walter – Internet Post Polio List – TOMINCAL@aol.com
In an effort to promote communications between polio survivors we would like to list your Internet address here. E-Mail the information to Dave Graham at DAVID508@aol.com.
Share-A-Ride
This registry is designed to provide transportation to support group meetings.
If you need a ride or you can provide one please call Denise at 926-5192.