On page 2 – Reflections by Elinor Young
On page 3 – The Sedentary Sportsman by Dave Graham
& The Computer Connection
On page 4 – Cold Intolerance
& So why P.P.S.
On page 5 – New in the Library, More goodies from Linda Scott
& Health Insurance Info
On page 6 – Organization Information
Sharman’s News
from Sharman Collins
GREETINGS! The holiday season is approaching. It’s easy to try to do too much this time of year! Baking, shopping, and visiting with relatives can be extremely tiring. If you are coping with post-polio fatigue, weakness and pain, you need to carefully choose the activities that are most important to you. Losing additional strength does not have to be a part of your Thanksgiving and Christmas. Make sure to make time for the REST that you need to have.
On November 28, Steve Whitley from R.S. Wheelchair Repair will be our guest speaker. Steve has a lot of information to share with us about scooters, wheelchairs, lifts, etc. He is going to bring some equipment for us to see.
We will not have a regular monthly meeting in December. Our annual Christmas luncheon is scheduled for December 16 at the Red Lion Inn. “HO, HO, HO!” This year we will have our own banquet room and we are planning some entertaining activities. Be sure to get your tickets from Dave Graham. It’ll be great fun.
In January, Bob Paull, P.T., will be our guest speaker. Bob is very knowledgeable about post-polio syndrome. He will discuss the original polio and how it affected nerves and muscles and will then talk about post-polio symptoms. Physical therapy can be an important part of your individual treatment program. I know we will all benefit from Bob’s expertise.
I’m looking forward to seeing you in the coming months. Have a warm and happy holiday season!
Lots of love
from your friend,
Sharman
Polio Outreach of Spokane presents it’s
Annual Christmas Luncheon
Saturday, Dec. 16th,
11:30 am-RED LION INN
I-90 freeway at the Sullivan street exit in the valley.
Tickets are just $10 which includes food, tax, and gratuity. Tickets must be purchased in advance from Dave Graham at support group meetings or by sending your check to:
P.E.N. 508 Shoreline Drive
Liberty Lake, WA 99019
Reflections
By Elinor Young
The end of the year is often a time of reflection for me. As Thanksgiving and Christmas come, all of us tend to remember special holidays of the past. I’ve noticed, though, that since post-polio syndrome came to live with me, year’s end brings original polio memories to mind more frequently. Memories including my dad’s carrying me to the hospital in a snow storm. “Hurry, Daddy. I can’t breathe.” It was Jan. 6, 1952. I was barely five. Like it was yesterday – no, like it was today – I remember with tears the great sadness I felt when I first realized I could never wear the shiny red shoes I had asked for for my birthday. That was a big loss to a five-year old. Those red shoes still symbolize the polio losses.
This year my reflections started earlier. August 17th is Indonesia’s Independence day. That’s kind of ironic for me, because it was on that day that I left my profession as a missionary in Indonesia to come back to the States to find out what was wrong with my knees. I discovered it was far more than my knees, and I wouldn’t be able to return to my much-loved adopted culture and people. I was rapidly losing my hard-won independence.
Nevertheless, that day also symbolizes much that is happy. Many, many happy memories, including the trip back. It had been arranged that I would travel back with a family returning to Calgary, Alberta. There was no way I could travel alone. Typically (if you’re travelled in the “third world,” you know what I mean), when our plane came from Jakarta to pick us up in Irian Jaya, they had failed to reserve the right number of seats. Instead of six, there were only two. It was decided that I would get one and 18-year old Don would get the other. He was as experienced an international traveller as any of us, and strong enough to handle luggage for both of us.
My legs had gone, but my arms hadn’t lost their strength yet. No wheelchairs being available anywhere in that province, I used some home-made wooden crutches to which I tied a little red-and-white Indonesian flag. Friends carried me across the tarmac and up the steps of the plane, and Don and I were off.
Don called me “Aunt Elinor” and couldn’t have been more kind, considerate and helpful if I had been his mother. (He’s in medical school now, by the way, and will make a tremendous doc!) I had a letter from a doctor, requesting wheelchair support along the way, but it wasn’t until we hit L.A. that such was available. We landed in Spokane 35 hours after leaving Irian Jaya. My red-and-white Indonesian flag was still flying from my jungle crutches.
That was four years ago. For the encouragement of those of you who are new to this post-polio thing, let me tell you that you WILL learn how to cope with it all. It has only been in this past year that things have gotten better for me. It took me three years to get to this point. I don’t mean I have regained strength or have become free from other symptoms. But I have handled the major emotional hurdles and am intact and thriving. Most days.
You know the kind of hurdles I mean. The emotional trauma and depression of my body’s betrayal and of losing my independence and professional identity. The loss of contact with friends I left behind. The unique hurdle of cultural re-entry; I looked and talked like an American, but the resemblance ended there. Then there was the stress we all face of researching and pressing the medical community to get appropriate treatment and equipment.
Now I have a management program that is keeping the PPS controlled as much as possible, and I can think of my years in Irian Jaya, Indonesia, with a grateful smile. God gave me a very, very special gift in helping me to do what I did. Not many people get to even visit such a place, let alone live there, learn the language and make friends. Sometimes the tears of grief at the losses still come, but quickly behind comes the joy of the wonderful memories. Kind of like that red-and-white flag; the loss and the joy are side-by-side.
During the difficult first three years I kept telling myself, “Be patient with yourself. Give it time. You’ll learn. You’ll work out how to handle this.” I knew all along that the Lord was with me; that he would help and I would come out of the woods, but it would take awhile. I was right.
So, you who are newly facing the process, give it time. Use your tenacity to get the help you need. Use your head. Pay attention to what your body says is best. Have the courage to realistically face the truth about the needed changes, and make them. You’ll be OK.
The Sedentary Sportman
by Dave Graham
This last weekend I participated in a ritual, something I have done every October since I can remember. I went deer hunting.
Sunday afternoon as I was riding home from the hunt, I reflected on my years as a Nimrod. It seems that recent physical changes, which limit my mobility, have had little affect on my rewards in the field or my enjoyment of the sport.
As an excitable teen, in the prime of my physical condition, I would barge through the woods, gun in hand, daring some unsuspecting buck to cross my path. Occasionally one would and that is where maturity set in as I learned not only to kill, but to dress, butcher, wrap, store, cook and eat the venison.
One year I actually got lucky and shot a nice matched four point (called an 8 point in the East) which I had mounted. Today he hangs above our hearth. We call him Rudolf and we decorate his antlers at Christmas time.
As a father, I sat with my boys through their days of hunter training. My vigor for the hunt had mellowed, but I still walked the forest, trying to keep up with my sons. At the end of the day I would soak my aching feet and promise myself to never push quite that hard again. Promises, promises.
More recently, my hunts have become more of an exercise in sitting than walking. My rifle rarely leaves my lap. I have realized that sitting is a much better way to hunt as it reveals a multitude of pleasures not previously enjoyed. My sons beat the brush for that fleeting moment when they scare up an animal and it scurries from their sight. I sit back and wait for the animal to parade past my viewing stand.
In my solitary, much is revealed. From my point of vantage it seems that God has displayed His forest tapestry for my exclusive pleasure. The reality of autumn is realized in the flame of Aspen leaves as they articulate on a field of evergreen. With the breeze comes their wash, a sound like no other. My olfactories remind me of the deciduous cycle. The rotting of discarded leaves smells like walnut shells. As the sun reaches it’s apex, it warms dusty pine needles, tainting the air with fragrance.
Ahh, such beauty. Should I be more able-bodied, would I pause to appreciate this aspect of the hunt? This is truly a reward for the sedentary sportsman.
STILL RICH
by Jenny Retzinger
I can no longer lift the turkey in the oven, Scrub the floor, Or dust the ledge above the door, Or get down on my knees to pray.
With each tick a little more is chipped away.
But I can share my grandchild’s kiss, And warm to arms wrapped ’round my neck, And hear sweet voices that I love each day,
I’m full of hugs and kisses yet, to give away.
Pearls of wisdom from SPLASHES OF JOY IN THE CESSPOOL OF LIFE by Barbara Johnson
Nobody cares how much you know unless they know how much you care.
Talking is sharing…
Listening is caring.
The easiest way to get a healthy body is to marry one
Computer Connections
There is an active post-polio mailing list that can be joined by sending E-Mail to listserv@sjuvm.stjohns.edu With a blank subject line write: Subscribe Polio your first name and your last name.
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 disABILITIES forum and a post-polio chat room on Tuesday nights.
For A O L free introductory packets with 10 free hours to try out the service. Call (509) 255-6131
With winter on the way…
COLD INTOLERANCE
Excerpt from a paper prepared by Stanley K. Yarnell, M.D. entitled: “A Ten-Year Experience”
Forty-one percent of the polio survivors complained of worsening cold intolerance. For nearly everyone it was not a new problem, but one that had been present since the onset of polio to a less bothersome degree. It appears that some of the sympathetic nerve fibers were affected originally, and these fibers are the ones that constrict the blood vessels of the skin in response to cold. Normally, when we are exposed to cold, the blood vessels of the skin constrict to shunt blood away from the surface of the skin down to the underlying bone and muscle where heat can be conserved and core body temperature maintained at 98.6 degrees F.
Some polio survivors have lost that ability to shunt blood away from the skin, and so heat radiates away from the affected limb and it cools down. The best treatment is an elastic stocking and good woolly socks.
The other part of the problem is decreased muscular performance in the presence of cold. Many polio survivors find they are unable to swim in an unheated pool, or they find that they have more trouble walking in cold winter weather. This is explained by the fact that when muscle is cooled, defective neuromuscular transmission is made worse. If you suffer from cold intolerance, you can only be advised to try to avoid cold exposure and “button up your overcoat.”
So why P.P.S. – Four Theories
THE ETIOLOGY OF POST-POLIO PROGRESSIVE MUSCULAR ATROPHY Burke Jubelt, M.D. Associate Professor of Neurology and Director, Post-Polio Clinic,Northwestern University
The etiology or cause of the Post-Polio Syndrome (PPS) and PPMA (new weakness with or without atrophy) is not known. Numerous theories or hypotheses have been proposed. None have been proven, four of these theories have been thought by most researchers to be more likely.
The leading theory is that there is drop-out of newer nerve terminals from the reinnervating motor nerve cell. When the acute poliomyelitis occurred many motor nerve cells died. The remaining motor nerve cells had to send out new nerve terminals to supply signals to the muscle fibers that had lost their nerve cells. Many years later (30-40 years after the original polio) these new nerve terminals may be contracting and dropping out. This theory is supported by single fiber electromyographic (SFEMG) studies and by some muscle biopsy studies. Why these nerve terminals would drop out is also not known although theories have been suggested for this also.
An alternative theory is that the motor nerve cells themselves are dying. Possibly after supplying many more muscle fibers than normal, the motor nerve cells remaining after the acute polio can no longer maintain this increased metabolic demand (of supplying too many muscle fibers) and begin to die earlier in life than normal. A few muscle biopsy studies support this theory.
A third theory is that PPMA is an auto-immune problem, i.e., a person’s immune system (antibody, white blood cells) attacks his or her own tissues. This theory could overlap with the two above as immune system could attack either nerve terminals or the motor nerve cells or both. This auto-immune reaction might occur because proteins in the nervous system were permanently altered by the original poliovirus infection. This theory is supported by the finding of unknown antibodies in the spinal fluid and the finding of white blood cells (inflammation) in the spinal cords of patients with PPMA.
The fourth hypothesis is that the poliovirus may have come back or reactivated in some way. There is no convincing data to support this theory but whenever there is inflammation (see previous paragraph) the possibility of an infection is suggested. However, poliovirus antibodies are not increased in PPMA patients and poliovirus has not been isolated from the throat, stool or spinal fluid. Thus, if poliovirus is present at all, it could only be in the spinal cord in a very altered form since infectious virus cannot be recovered from anywhere else. This would be a very atypical and unusual poliovirus infection but this theory cannot be excluded for sure until spinal cords are examined. In any case, PPS and PPMA patients are in no way an infectious risk to others. This is not a problem or worry.
In this brief review, I’ve only mentioned the most frequently discussed possible causes. Maybe another will turn out to be the actual one. As you can see, we have a lot of work to do to solve the question of the Post-Polio Syndrome.
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 support group meetings and by mail.
New in the Library
PACK UP YOUR GLOOMIES IN A GREAT BIG BOX, Then Sit On The Lid and Laugh!, by Barbara Johnson (mentioned in Sharman’s column in the last PEN & ink)
Handouts By Mail
When you were diagnosed with P.P.S. were the terms myoclonus or myelitis or peripheral neuropathy used? If so, the following articles from the National Organization for Rare Disorders will answer your questions. MYOCLONUS – MYELITIS – NEUROPATHY
Catalogs to send for
Home Health Care Products for Life 1- (800) 284-9123
Improvements, Quick & Clever Problem-Solvers! 1-(800) 642-2112
Healthhouse USA, Box 9036, Jericho, NY 11753-8936 or 1-(516)-334-9754
Items to send for
The Doubleday LARGE PRINT Home Library, PO Box 6350, Indianapolis, IN 46209-9473. Books are all in 16 pt. print with more space between lines. Books are todays best sellers.
Washington State Podiatric Medical Association 1(800)-FOOTCARE. Pamphlets are available on specific foot problems, including orthotics.
Articles that have been listed in past issues continue to be available.
Contact Linda Scott – 1320 N. Hollis Spokane, WA. 99201-3012
Are you and your family in need of affordable health insurance?
You have a choice.
Health Access Spokane
Spokane County residents between the ages of 19 and 65 who don’t qualify for Medicaid or Medicare benefits may be eligible for health-care coverage through Health Access Spokane. The coverage includes preventive care, doctor visits, x-rays and lab work, hospitalization, prescriptions, and emergency care. Participants pay no premiums and no co-pay through March of 1996.
Washington’s Basic Health Plan
Funded by the Washington State Legislature, the Basic Health Plan provides quality, low cost health insurance to 70,000 state residents. Monthly premiums are based on age, family size and income. Applicants with incomes less than 200 percent of the federal poverty level ($29,600 annually for a family of four) receive state assistance to help pay their premiums. Small businesses may also take advantage of this program to provide coverage for their employees.
For more information on these programs, call 1 (800) 826-2444 or write to :
Washington Basic Health Plan PO Box 42542
Olympia WA 98504-2542
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 (509) 926-5192.
PEN & ink
mailing to over 450 people nationwide, to provide experience-based advice and emotional support for polio survivors, family and friends.
Because you asked…
PEN & Ink comes to you free of charge – which delights its all-volunteer staff.
However, contributions for expenses of PEN & ink and for helping polio survivors are welcome. Thank you! Send your check to…
Polio Experience Network 24104 N. Jim Hill Rd.
Chattaroy, WA 99003
If you do not wish to receive PEN & Ink, please call (509) 255-6131.
P.E.N. & ink For Polio Survivors & Friends 508 Shoreline Drive
Liberty Lake, WA. 99019