Inspiration, news and knowledge from Polio Experience Network
No. 12: May /June, 1996
In This Issue:
“Russian Far East Trip,” by Elizabeth Behrendt
“Things I Have Learned,” by Elinor Young
“My New Math,” by Elinor Young
“Life Is Different…But Life Is Good,” by Dave Graham
“Red Flags for Polio Survivors,” by Dr. Bruno
Russian Far East Trip
August 4-20, 1994
by Elizabeth Behrendt
Have you ever wanted to take a trip that was exciting, challenging, exhausting, wonderful, and filled with hundreds of new impressions? I had the good fortune to make such a trip to the Russian Far East with a group from Challenge Alaska (the Alaska chapter of the National Handicapped Sports Association). Eight people made the trip. Five of us had disabilities: two people with leg amputations, a paraplegic, a young woman with cerebral palsy, and myself, diagnosed as possibly having both a form of muscular dystrophy and post-polio syndrome. The other three were strong young men who pushed, pulled, lifted, rolled, dragged and did whatever else was necessary to get us where we needed to go in four Russian cities.
After flying from Anchorage to Khabarovsk, we were treated by the Russians to a seven-day, 200 km cruise down the wide and beautiful (though polluted) Amur River in an 80 foot motor launch. Twenty people, including us, crew, doctor, hosts, and occasional hitch-hikers shared one bathroom without major incident. Meals, served on the aft deck, were plentiful (too much), and tasty, although not always familiar to our American tastebuds. The mosquitoes, however, were totally unprejudiced and found us delicious. At night the dining table served as a bunk for some of those who found their c abins too stuffy. On our trip down the river we spent a day each in the village of Troitskoe, and the cities of Amursk and Komsomolsk, meeting groups of Russians with disabilities.
The Russians are only now beginning to think about people with disabilities in terms of possible employment and being able to contribute actively to society.
We then returned to Khabarovsk for another week of meetings and sightseeing while living with a Russian family.
We were greeted everywhere by warm and friendly people facing incredible problems which defy solutions: very old buildings of up to six stories without elevators, or taller buildings with elevators too narrow to accommodate wheelchairs, no public buildings without steps on the outside and inside, no easy access to any stores, not to mention restrooms, and often extreme poverty make independent living a virtual impossibility. At various times we were interviewed by local TV, radio and newspapers. We hope that the publicity from our trip provided some encouragement to their emerging disability rights movement. While we can help with some needed equipment, most solutions must come from within Russia.
Other impressions: much traffic, all kinds of vehicles driven with great joy and abandon, much unmowed grass, herds of cows in the main square doing their best to control the vegetation, great amounts of food and drink offered several times a day, as well as many presents, over 2000 rubles to t he dollar, so overheard several times, can you lend me 30,000 today? sure take 50, and the lookout point from where you can see China. But most of all the great hospitality of friendly, good-humored, incredibly wonderful Russian people.
[Liz is an active member of Polio Outreach of Spokane. Born in Germany, she came down with polio at age four. She is a retired librarian. Liz is presently working with several disability organizations, specializing in accessibility issues as well as travel and recreation.]
Things I Have Learned
by Elinor Young
It has been five years since my post-polio super-crash, when my legs suddenly turned into burning fire sticks and my whole nervous system felt like it was going to explode. Four and a half years ago I returned from Irian Jaya, Indonesia, where I had been a missionary, and began facing the issues of my new disability in earnest. As a Christian, for me facing an issue always means dealing with spiritual matters first.
These are some things I have learned:
- I may ask, but must never insist on healing. To insist implies that I, not God, have the correct perspective on what this is all about.
- Although I may ask for reasons this has happened, giving God all my reasons it shouldn’t, questions His justice. Though I don’t know them, I will trust God’s plans: “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope an d a future.” (Jeremiah 29:11)
- Accepting and fully expressing grief is essential. Loss is sad. Even Jesus cried in sadness — but never in self pity. I must resist that.
- I pray for joy while remembering that joy does not necessarily mean freedom from burdens.
- When in a pit of depression, the only way up is out. I need to reach out to help a fellow struggler, whatever their problem. When I reach out, I am lifted up.
- I must always pray for insight into creative (or obvious) ways to use the pain and weakness for good. “Don’t waste the pain.”
- Inner peace comes when I accept and share God’s comfort, “who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.” (2 Cor. 1:3-4)
My New Math
by Elinor Young
To manage my new life with PPS, I use a “new math” with units called Events.
I classify things into Events, Big Events and Killer Events. Then, of course, there is the Major Crash Killer Event, which naturally ALL of us are smart enough to avoid……
The Units
An Event is any activity when I’m moving around for one or more hours in the morning: – having a visitor, going in town to get my hair cut, or pulling a few weeds in my flower beds – activities of that level.
A Big Event is anything at all in the evening and anything in the morning that means I’m upright, alert and semi-active for two hours or more, although more pushes things close to a Killer Event. Going to the doctor is a Big Event.
A Killer Event is an extended Big Event, a Big Event plus noise or just a Killer Event on its own — like a doctors appointment in a cold room, or being at a meeting with a lot of noise, bustle and talking. Church usually fits this category. Support group meeting night is a Killer Event, too (actually, a Major Killer Event). But both are worth it.
A Major Crash Killer Event is a situation I’m stuck in that drains my reserves dry then takes a pound of flesh. A scooter break-down (and having to walk) or getting caught in traffic and not getting home and on my BiPAP ventilator until after 1:00 PM are Major Crash Killer Events.
The Math
An Event two days in a row equal one Big Event. Two Events in one day may equal a Killer Event, depending on how much umph I had to start out with. One Event plus one Big Event, whether in the same day or back-to-back days, definitely equal a Killer Event. If a Killer Event is followed the next three days by any kind of an Event, the total is a Major Crash Killer Event.
An Event requires the remainder of the day and usually the next day to rest from. A Major Event requires at least two day’s recuperation – three is better. A Killer Event means about five days of rest before I can handle another Event. A Major Crash Killer Event takes a minimum of one, usually two weeks of no Events to recover from.
This description is, of course, subject to further refinement. But the extra thinking might be too much of an Event.
Life Is Different… But Life Is Good
by Dave Graham
To know me was to know my disability. Unless you were blind, it was obvious that polio was not very kind to me.
I had only known it one way. Polio came when I was ten months old. It left it’s scar for a lifetime. Because I was a baby, it seemed natural.
As an adult, the ethics of my social strata required me to make my way, to get a job, earn a living and be a tax-paying contributor. I worked hard every business day for twenty-eight years. I paid my way.
As a business man, I cussed the 30% tax that was wrenched from my pay check. I railed at the one dollar the government gave back in services for every three they extracted. I saw the government’s social programs as wasteful, rife with fraud and spawning dependency. I was politically conservative, a right-winger.
Post-polio syndrome tends to change one’s perspective. In the very peak of my earning curve I was suddenly and most profoundly unable to work. Everything changed. I was forced to file for Social Security Disability!
My wife had to go to work. I was officially retired at age 48.
Four years have passed since that transition, and I can report that life is good, but life is different. It took me some time to appreciate the finer things of this life style, but they were there nevertheless.
I no longer wear a watch, a fixture that seemed to rule my past. From a lifestyle that seemed driven by dollars and time, I now appreciate a nicely kept yard and an afternoon nap.
I have more real friends. At least I have time for them now.
My political philosophy is built on a new perspective. I no longer look at all of the government’s social programs as being the scourge of the working man.
I truly appreciate my wife and the contribution she makes in the support of our family. I have learned to cook.
I can’t golf any more, but I’ve become an exceptional fisherman. I’m also an avid arm-chair sports fan and I know the players by name.
I have a spiritual life now. Oh, I was a believer before, but somehow I never devoted the time to cherish my Creator and to worship Him.
Life is different… but life is good.
Red Flags for Polio Survivors
by Dr.Richard Bruno
[Mis]Diagnosis: Many polio survivors have been incorrectly told they cannot have PPS because they didn’t have paralytic polio. The National Institute of Health has just studied pairs of identical twins, one who had paralytic polio and one who had non-paralytic polio. Seventy-one percent of those who had paralytic polio have PPS. The surprise is that 42 percent of those who had non-paralytic polio also have PPS. The lesson: Don’t let a doctor tell you it’s all in your head just because you didn’t have paralytic polio.
Anesthesia: Polio survivors are anesthetized very easily because the part of the brain that keeps you awake was damaged by the poliovirus. They also stay anesthetized longer and can have significant complications from anesthesia. Even nerve blocks with local anesthetics can cause problems. All polio survivors should have lung function tests before having a general anesthetic. “Polio survivors with a lung capacity below 70 percent may need a respirator or respiratory therapy after surgery,” says Augusta Alba, of New York’s Goldwater Memorial Hospital.
Your complete polio history and any new problems with breathing, coughing or swallowing should be brought to the attention of your surgeon or dentist — and especially your anesthesiologist — long before you go under the knife. Also, polio survivors should not have same-day surgery.
Pain: Two studies have shown that polio survivors are twice as sensitive to pain as everyone else and need more pain medication for a longer period after surgery or an injury. Survivors, however, have had to develop an extremely high pain tolerance to deal with their increased p ain sensitivity and are not likely to become addicted to medications.
Sleep: Most polio survivors have trouble sleeping due to pain, anxiety or sleep disorders such as sleep apnea or generalized random myoclonus. GRM occurs when muscles in different parts of the body twitch and jump throughout the night.
Amazingly, most polio survivors aren’t aware that they stop breathing or twitch. If you awaken with a headache, with your heart pounding, short of breath or don’t feel rested in the morning, call a local sleep disorders center for a sleep study.
“Reprinted with permission from New Mobility magazine, (800) 543-4116”