In This Issue:
Sharman’s News, Sharman Collins
“…And the Bauzis Laughed,” by Elinor Young
“Futures Unlimited…,” by Sharman Collins
“The Handicapped Parking Syndrome,” by Dave Graham
“Ultimate Burnout,” by Dr. Richard Bruno
The Editor … On the Election
Linda’s Library (Linda Scott)
Sharman’s News
FALL IS HERE! I hope you all enjoyed the summer weather. A long, warm autumn with brilliantly colored leaves would be most appreciated. I’m looking forward to the crunch of leaves under my scooter wheels!
Our fourth annual picnic is September 14 at the home of Ann and Alex Looms. The festivities start at 10:00 a.m. Music will be by Ron Haack and Dave Graham. Ann and Alex will provide the hamburgers and we will pot-luck the rest. Call the Looms at 208-772-4917 to let them know if you are able to attend and find out what you can bring.
Our September meeting will be on MONDAY, the 23rd. The auditorium at Shriners is not available for the usual fourth Tuesday-of-the-month meeting. Mark your calendar for September 23! Sue Lienhard, Pharmacist, will be discussing the different drugs that are available for pain control. Sue has been a speaker at our meetings before, and she has a wealth of knowledge to share with us.
On October 22, Inland Medical and Rehabilitation will provide us with information about scooters and other available equipment.
Don’t forget to let the Looms know as soon as possible if you will be able to attend the picnic on September 14th. This event will be lots of fun and I’m looking forward to seeing you there!
I’ll see you at Shriners Hospital in the 5th floor auditorium at 6:00 p.m. on September 23rd. 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.
With love from your friend, Sharman
…And the Bauzis Laughed
by Elinor Young
I’m going to do it. I’m going to tell you a story I have only told two people before now. It is, after all, a rather painful memory.
If you, like me, had polio as a child and were left with visible effects, you probably know the hurt of ridicule. Strangely, despite my braces, crutches and a “galumph” to my gait, I wasn’t ridiculed growing up. A friend who was a few grades ahead of me in our small rural school said there was an unwritten rule among the kids that if anyone dared tease me, he/she would have been flattened on the spot. My community and my family protected me.
Maybe that’s why the incident recalled by this memory was so shocking. It is still so vivid I can recall even the scent of the scene.
I am in Irian Jaya, Indonesia, where I lived for 18 years in a small interior mountain valley called Korupun, working as a missionary among the Kimyal. I love these small, animated people. Kimyals and I match just fine – I am 4 feet 7 1/2 inches tall, and they, as border-line pygmies, average about my height. Each of the 300 tribes of Irian Jaya have a unique stature, physique and personality.
The island’s geography displays similar variety. It is largely flat, swampy jungle sharply intersected length-wise by a spine of glacier-containing mountains. By flying, in half an hour you can go from steamy hot to freezing cold. Korupun, at 5600 feet elevation, is a favorite cooling-off vacation spot for missionaries from the lowland jungles.
Reversing the normal trend, I am visiting missionary friends in the northern swamp-lands, taking a vacation, enjoying the heat and sounds of the low-elevation jungle. I am now in Bauzi territory.
Say the name and you’ll get a good idea of this tribe’s characteristic mien. Say an “m” before you explode the “b” and growl “ow-zee.” “Mb-OW-zee.” The men are big bruisers. I mean BIG! Being fresh from Korupun, to me Bauzi men look like giants. They are 6 feet and more in height. From the time they could walk they’ve spent much of their lives standing in narrow dug-out canoes poling or rowing up or down rivers. Their thighs are like tree trunks and their upper arms and chests are like giant oaks. I’m not afraid of them, though. I have met people from several tribes, and haven’t yet felt antagonism from any of them.
One day, there at my friend’s place in Bauzi territory, I feel the need for some exercise so decide to go for a late afternoon walk. The jungle is alive with the sounds of birds and cicadas announcing, “Prepare! In an hour the sun will go down.”
The stale quiet heat is suddenly roused by five Bauzi men who appear out of the jungle on a path parallel to mine and about 25 feet away. Their bodies shine with several days’ sweat. They wear bark loin cloths or tattered, rotting ghosts of Western shorts and briefs. A pungent odor radiates towards me.
“Selamat,” (“Hello”) I say in Indonesian, thinking they probably know that much of the national language. They respond with a burst of laughter. They point at me, slap their legs, and rock at the waist in loud amusement. I don’t know their language, but I know what they are saying. As I continue walking, these big Bauzis mirror my gait, exaggerating it. The jungle no longer feels friendly.
My mind races. “Their mood can swing in a snap. If they start to throw things, I have no defense.”
I try to win them by smiling and waving, but that only intensifies the amusement of the five men. Their howling laughter slams into my chest, weighing me down. Since contracting polio I have not been able to run, but my legs feel even more useless as I lumber as fast as I can towards the safety of my friends’ house, watching carefully that I don’t trip.
Then, without warning, the Bauzi men turn and disappear again into the jungle.
I’m almost to the house, but I dare not go in yet. I can’t let my friends see me shaking like this. They will ask why, and I can’t bear to tell them. No one is supposed to notice my “differences.” I want people to forget. And I’d be ashamed to embarrass my friends with the knowledge that “their” people were so cruel.
When I regain my composure, I go in. “How was your walk?” Ellen asks.
“Fine.” I smile and walk towards my bedroom.
That little room is not the haven I want it to be. The sounds in my head won’t go away. The cruel laughter, the voice of fear, the whisper of shame. “Lord, please, please — I don’t know how to handle this.”
Maybe that is another reason why I didn’t want anyone to know about this. My “she-can- handle-anything” image would be tarnished. So why am I now telling you?
Because I don’t mind admitting anymore that I can’t handle these kinds of things. I don’t have to. I have discovered what the much-maligned Biblical prophet Jeremiah found when he complained, “I became the laughingstock of all my people; they mock me in song all day long.” (Lamentations 3:14) But then he said, “I well remember them, and my soul is downcast within me. Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, ‘The LORD is my portion; therefore I will wait for him.’” (Lam. 3:20-24)
Yes! My identity is not what the Bauzis saw and mocked that day. Nor is it “that cripple in the scooter” someone sees at the mall. It is the real me inside, seen, described and loved by God. I don’t find any shame or fear there. Not even any anger, because the Lord sees inside the Bauzis of this world and loves them, too, and wants to change and heal what makes them so cruel. So, I am content to wait and let Him handle it; I don’t have to. Whew, what freedom!!
Hey, world, do you want to hear a story? I met these Bauzis on a path one day, and…….
“Futures Unlimited..“
This two-part article documents the experiences of Sharman Collins as she undergoes a unique treatment for Post Polio Syndrome
August 17, 1996
Greetings from Columbus, Mississippi! I started a two-week therapy program on August 11 at Futures, Unlimited, Inc., an out-patient physical therapy and rehabilitation clinic that provides a broad range of treatment services. This clinic primarily deals with clients suffering from post-polio syndrome, spinal cord injuries, cerebral palsy, head trauma, and developmental disorders. In the field of rehabilitation, the clinic’s efforts are primarily directed by Ed Snapp, P.T. Mr. Snapp is a graduate of University of Texas Medical Branch School of Physical Therapy at Galveston, Texas, 1947. Mr. Snapp is a polio survivor.
My husband, Ken, and I arrived in Mississippi after two days of travel. My therapy started bright and early on Sunday, August 11. Mr. Snapp spent two hours examining me and explaining his theories to us. The therapy is designed to “wake-up” or stimulate the central nervous system. The sequence of the passive “exercises” and the application of stimuli are rigidly controlled. All distracting stimuli are eliminated. This progressive sequence of activities is frequently called Chronologically Controlled Developmental Therapy or Environmentally Enhanced Physical Therapy. In the intensified treatment plan, I would receive 6 to 8 hours of treatment each day.
I did not know what to expect. Mr. Snapp felt that I would respond well to the treatments so I was ready to give it a try. My first session was an hour of deep tissue massage. And I do mean deep! The therapist also moved my joints through their entire range of motion. Pressure was applied to various points up and down my body. All of the therapy is done in very dim blue or green lights.
Hour two was total relaxation spent curled up in a fetal position. The third session in the morning I was suspended in a warm swimming pool with a therapist making gentle waves. The waves caressed my body and helped me to relax.
Lunch was served in the dark. I met the other patients being treated at the clinic. Zoe Hawkins, from Auburn, Nebraska, and Linda Hicks, from Phoenix, Arizona, were at the clinic for the fourth time! They told me how much the therapy has helped their post-polio symptoms over a period of many years. Both of them have been able to park and leave their scooters unused since they started visiting the clinic. I was beginning to feel encouraged!
The afternoon was basically a repeat of the morning–except for an hour spent in an isolation flotation tank. I found the isolation tank to be very agitating. I could hardly wait to get out! That first night I slept with ice packs on my sore hips and shoulders.
The therapy continues day after day with no break. But the best part–I have had a significant decrease in post-polio pain. Plus–I am walking better and further and sitting up without my back brace. Last night I went sightseeing with Linda and Zoe and then out to dinner–with no scooter or back brace. I climbed up a flight of stairs and had little pain or fatigue. I haven’t felt this good for many years. Mr. Snapp assures me that if I follow his instructions when I get home, I will be able to increase my stamina and strength.
I have finished eight days of therapy. Tomorrow, Linda, Zoe, and I are going to the the local Go-Kart Park! Watch out world. Here I come!
(This article will conclude in our next issue.)
The Handicapped Parking Syndrome
by Dave Graham
I wheeled my van into the familiar parking lot. Snaking the narrow row, I looked for my special slot. To my astonishment, it had changed – no blue sign, no handicapped emblem, and what made matters worse, there was a car parked in the stall. I was speechless! How could the company do such a thing, and to me, their very best customer?
I searched out another place to park, then crept back to the spot where this act had been perpetrated. There, before my very eyes, it seemed the handicapped parking slots had been converted for the able bodied public. I was aghast!
I burst into the store and with righteous indignation advanced on a poor clerk who was greeting me. I was about to bite his head off when his humble smile defused my anger. Then calmly, I expressed my concern. The fellow was quite apologetic and promised that something would be done about it.
Later that day I looked back and pondered the moment. That parking place… was I taking ownership in that territory? Six years ago, before post-polio syndrome, the thought that I would need that special parking place was abhorrent to me.
I remember having to warm up to using the designated car slots. It took a while. I had received my blue placard which allowed me the privilege, but wasn’t sure I could use it. Doing so would be acknowledging the truth in still another way. I thought, wouldn’t people stare at me, what would they think? Aren’t there others that really need this parking place?
As time went on, I realized the great advantage that close-in parking allows. It wasn’t long before I was regularly enjoying these opportunities.
In conclusion, I telephoned the store manager to voice my complaint. He assured me that they were just about to stripe the parking lot and would soon reinstate my reservation at their doorstep.
ULTIMATE BURNOUT: post-polio sequelae basics
By Dr. Richard Louis Bruno
It’s 8 p.m. and only one light is burning at corporate headquarters. Mr. Gray, MBA, the 55-year-old CEO, is awakened by the phone. He lifts his head from the desk to answer and hears his wife asking when he’s coming home.
Feeling as if he weighs a ton, his muscles burning, Mr. Gray wheels himself to the car and, with barely enough strength to pull his chair in behind him, drives home. He greets his kids, rolls into the bedroom, and throws himself on the bed. It’s the third night this week he has gone to bed without dinner and slept in his clothes.
The alarm rings at 5 a.m. A clean suit and a cup of coffee later, Mr. Gray is on the road again. Driving to work he hears the same faint “sizzling” sound he hears every morning — a sound like electricity arcing between two frayed wires.
But on this and every other morning, he ignores the sizzling, ignores his increasing fatigue and muscle weakness and pain. He has a corporation to run. There’s no time to “give in” to his body. But he has to wonder: “What is that sizzling sound?”
Well, Mr. Gray, that sizzling is the sound of your nerves burning out. Nearly 80 percent of America’s 1.63 million polio survivors hear the same sound as they, too, experience post-polio sequelae. PPS are the unexpected and often disabling symptoms — new fatigue, muscle weakness, joint pain, cold intolerance — that occur about 40 years after the original bout with polio.
PPS are not caused by the return of the polio virus that’s been hiding in the body for decades. Nor are they the result of some new disease. The simplest explanation is that polio-damaged neurons are mad as hell and they’re not going to take it anymore.
When polio struck, large numbers of neurons in the brain stem were damaged by the polio virus. For those who had paralysis, the polio virus damaged 90 percent of the neurons in the spinal cord that run the muscles; nearly half of those neurons died. The surviving but damaged neurons are less able to manufacture acetylcholine, the chemical that neurons release to make muscles contract.
Yet the damaged neurons could send out sprouts — like extra telephone wires — to turn on muscle fibers orphaned when their motor neurons were killed by the polio virus. This sprouting allowed many people who were totally paralyzed during the initial polio attack to actually walk out of the hospital some months later.
But since these polio-damaged and over-sprouted motor neurons have been doing double and triple duty for 40 years, even polio survivors with minimal loss of function have been heading for a fall.
“Sprouted motor neurons can no longer make muscles contract as forcefully as they once did, or for as long as they once could, because their damaged internal chemical factory is failing after years of overworking,” says physiatrist Jerald Zimmerman of Kessler Institute for Rehabilitation. “Muscles become weaker and hurt as they try to do more work than they are able to do. And because weakened muscles can no longer support the joints, polio survivors’ shoulders and elbows ache and their knees start to bend backward.”
Standing, walking, lifting, pushing a wheelchair — sometimes swallowing and breathing, especially in those who had respiratory polio — become more difficult and more painful.
While new muscle weakness and pain are reported by more than 75 percent of polio survivors, the most common PPS symptom is fatigue. Fully 91 percent of polio survivors report two kinds: “body fatigue” and “brain fatigue.” Body fatigue is the feeling that you weigh too much and that the longer you use your muscles, the more they lose strength. Brain fatigue is the feeling that you can’t focus your attention, can’t concentrate on what you’re reading and can’t stay awake as the day goes on.
Post-polio future
With the coming of PPS, the future might sound bleak for polio survivors. However, Paul Peach, medical director of Georgia’s Roosevelt Warm Springs Institute for Rehabilitation says, “The future is much more optimistic than had been expected.”
Two recent studies have identified drugs that may decrease PPS fatigue. Neil Cashman of the Montreal Neurological Institute found that Mestinon, a drug that prevents the breakdown of acetylcholine in the muscle, may reduce body fatigue in some polio survivors. A just-completed study from Kessler Institute found that Parlodel, an anti-Parkinson’s disease drug, helped to increase attention and wakefulness and reduce post-polio brain fatigue.
But Peach warns that using drugs to treat PPS may be dangerous. And neither Mestinon nor Parlodel is effective if polio survivors don’t follow The Golden Rule for the treatment of PPS: “If what you do causes pain, fatigue or weakness, don’t do it!”
The Golden Rule does not mean that polio survivors should sit home and become couch potatoes. The Golden Rule does mean that polio survivors should stop exhausting themselves, especially with regard to exercise. No free weights, exercise bikes, tread mills, NordicTracs or Thighmasters for polio survivors. Stretching, however, helps decrease pain and increase range of motion. And gentle, non-fatiguing exercise can be useful for some survivors to help maintain muscle strength and tone, especially after getting a new brace.
Many studies show that changing survivors’ physically and emotionally stressful lifestyle is the best way to reduce weakness, fatigue and pain.
And there’s the rub. It’s only the refusal to listen to that sizzling sound that causes PPS to continue or progress. That’s why behavior modification and psychotherapy are vital to help survivors accept their second bout with polio, change their super-achieving lifestyles and deal with the fear of looking disabled. “There will be no magic pill to cure PPS,” says Paul Peach. “But by making lifestyle changes and eliminating ‘overuse abuse,’ progressive fatigue, weakness and pain can be substantially reduced or eliminated.”
I know, you’ll slow down and take care of yourself “when you’re ready.” You’ll use a wheelchair “when there’s no other choice.” Well, you don’t drive your car until it’s out of gas. Why drive your body until it’s out of neurons? Isn’t it time to listen to the sizzling sound? Isn’t it time to take care of yourself?
To paraphrase one famous paraplegic polio survivor who refused to take care of himself, “You have nothing to fear but fear itself.”
Reprinted with permission from New Mobility magazine. (800) 543-4416
A condensation: to get the complete article, check out the March ”96
New Mobility from Linda’s Library.
The Editor… on the Election
…..As election day nears and the rhetoric of politics seems so pervasive, I feel an obligation to voice my humble opinion.
…..I have two close friends running for office. I won’t tell you their names as we at P.E.N & ink do not endorse candidates. In each case, when I learned of their intention to run for office I did not have to ask them about party affiliation; my endorsement was dependent on my confidence in their integrity.
…..Both the media and much of the general public seems to have the attitude “Aw, politicians are all crooked so I will overlook the cheating and philandering”.
…..The fact is friends, there are honest people running for office and we can have confidence when we vote for honesty and character.
…..I know that both of my friends, when in office, will represent me with integrity because of who they are.
by Dave Graham
Linda’s Library
A unique and valuable resource for anyone interested in post-polio syndrome.
from Linda Scott
Contact Linda by writing to 1320 N. Hollis
Spokane, WA 99201-3012
A few bits of info helpful to we PP’s:
Many PP’s are sensitive to chemicals in food. Helen reports that Egger Meats here in Spokane, now carries meat and poultry without additives.
Is flossing your teeth a chore you frequently don’t have energy or strength for? A new floss, GLIDE, is slick and slips all but effortlessly in between the teeth. I wrap each end of the floss around each index finger for great success.
THYROID: After reading the article in the NY PP YEARBOOK about PP’s & low thyroid, my physician ordered the blood test and had me take my oral temperature 3 times a day for 3 weeks. With this info he prescribed thyroid for me. What an improvement in energy, mental acuity and I lost 5 lbs. According to the article, PP’s can have normal thyroid one year and low the next. It is a good reminder to tell your physician at your next appointment about PP and low thyroid.
Is your psyllium based fibre product causing abdominal discomfort? Try Citrucel. A small amount works better with less distress. Remember that intestines are muscles and PP’s don’t respond the same way as the general population does to dietary fibre.
Kathy reports turning off the TV was her best stress-busting move.
BERG’S Foot Comfort Center, 521 S. Bernard, Spokane, 624-2343 stocks ‘extra depth’ shoes to accommodate orthotics and braces. Be sure to tell them if you are diabetic as Medicare helps with the bill.
PYRIDIUM is now available over the counter as AZO-STANDARD (half-strength) for prompt relief of urinary discomfort: minor pain, urgency, frequency and burning . A helpful product to use until you can see your doctor for urinary tract infection medication.
Hungry for bagels & other morning breads? When in Spokane visit, Fitzbillies Bagel,1325 W. 1st, 747-1834. They have been very nice to the members of Polio Outreach of Spokane and our best way of saying thank you is to stop in and enjoy a gourmet bagel!
ORTHO-MCNEIL, the manufacturer of ULTRAM (tramadol), a prescription pain reliever is reporting that the following side-effects may occur: allergic reaction, seizures, drug interaction and dependency. Be sure to talk to your physician.
NEW in the LIBRARY:
NEW MOBILITY MAGAZINES, July: Consumer Guide, August: Christopher Reeve 1-800-543-4116, for subscriptions.
HANDOUTS BY MAIL:
GASTROINTESTINAL INVOLVEMENT IN PPS, Sinn Anuras,MD(Previously offered)
PAIN IDENTIFICATION WORKSHEET, courtesy of L.Miller, DC. Helpful in determining each type of pain and its location, enabling you to better communicate with your MD for a beneficial pain relief plan.