Inspiration, news and knowledge from Polio Experience Network No. 10
January – February 1996
EDITORS COMMENT
from Dave Graham
Our regular readers will notice a change of format and policy in this issue. The new look should be easier to handle and to read. We are experimenting with this eight page format to see if it is affordable. It will allow us to print larger articles and to feature Linda’s Library, a unique and valuable resource for our readers.
In an effort to promote a broadening of knowledge about post-polio syndrome in the medical community, we have dedicate page three and four to an article that you can take with you to your doctor. The article PPS: Information For Physicians, is written by Dr. Mavis J. Matheson, herself a polio survivor. Dr. Matheson has graciously given us permission to copy the article. The medical terminology and references will be appreciated by your medical professional. We recommend you also keep a copy for some future time when you may be a resource for a friend in need.
To defray rising publication costs, we have decided to accept donations for advertising. It will be our policy to run advertising only for companies in whom we have confidence.
Traveling to the P.P.A.S.S. Conference in Vancouver, BC: Dave Graham, Sharman Collins, Elinor Young and Alex Looms. (Thank you United Airlines travel assistants)
SYMPOSIUM SOUND BITES
Four of us from Polio Outreach of Spokane attended the International Symposium on Post-Polio in Vancouver, B.C., November 2-5, 1995. The following is some of what we heard there. We encourage you to attend any of the conferences staged throughout North America. You will gain much from the experience.
These are not all direct quotes. The wording may differ from the presenters’; do not hold me liable! Go to the source for validation. Also go to the source if you disagree with the theories and/or therapies. I’m just reporting, not recommending! (Elinor Young)
WHAT HELPS
Dr. Stanley Yarnell reported on a “Post-Polio Outcome Survey” he had done of 500 polio patients who had visited the Post Polio Clinic at St. Mary’s Medical Center in San Francisco. Of the patients who felt they were better since being seen, these are the top five factors they believe caused their improvement:
- Energy conservation techniques.
- Non-fatiguing general exercise program (20% rule).
- Work cut-back or retirement.
- Emotional reassurance.
- Wheelchair/scooter use.
BRIDGING THE NERVE-MUSCLE GAP
Dr. Neil Cashman, in his address, “Fatigue Associated with PPS” explained his theories behind the trial use of Mestinon. He believes that flooding the synapse (the chemical gap between nerve ending and muscle fiber) with mestinon may boost the power of the signal of weak nerves, allowing that signal to be picked up by more muscle fibers. This would lead to increased function and less fatigue without hurting a tired nerve. He said, though, to wait another year before jumping on the band-wagon; he is studying and experimenting. Whether or not he is right and mestinon therapy is helpful should be more clear in a year.
It was interesting to hear Dr. Yarnell say that whereas previously he had found mestinon to be unhelpful and would not recommend it, after reading more of Dr. Cashman’s research, he is willing to try it again with selected patients.
Dr. Karen Pape is also focusing on the nerve-muscle connection, though from a different theory base and therapy. She is using Therapeutic Electrical Stimulation to try to encourage a healthier connection from nerve to muscle.
BREATHING
Dr. Road explained that PPS patients should not use oxygen therapy unless they have actual lung disease in addition to PPS. He said that breathing weakness associated with post-polio is not lung disease; the lung organ is healthy, perfectly capable of absorbing oxygen and diffusing carbondioxide. The problem is weak breathing muscles due to the neuro-muscular disease of polio/post-polio. Polio survivors with weak lungs may be able to breathe in enough oxygen, but may not be able to expel enough CO2, because breathing out is harder than breathing in. CO2 build-up, not lack of oxygen, is the problem. What will help is breathing assistance, such as a Bi-PAP, as needed, to facilitate full exchange of gases in the lungs. Oxygen therapy is actually harmful; it signals the brain that the muscles don’t have to bother to breathe so much. As a result, breathing is supressed and becomes even weaker.
COPING
“Dad,” said the eleven-yr. old, “I’m happy you have post-polio.” “Why is that, son?” “Because now you are home, so we get to see you all the time. But, Dad, I’m sad you have post-polio.” “Why is that, son?” “Because you can’t play catch with me. But I’d rather have YOU than play catch.” [Dr. Brent Hoekema, D.C.]
Dr. Hoekema also encouraged especially the men, saying, “I’m home. I’m in the process of selling my business. My wife is having to take on more of the financial responsibilities and other things I did. And you know, it has allowed her to flower. She is more her own person than she was before. All of us have benefitted.”
Post-polio Syndrome (PPS): Information for Physicians
Mavis J Matheson, M.D. – An early outline of an article published in The Canadian Family Physician;
April 1995, entitled “Practical Tips on Post-polio Syndrome.”
About 64% of people who had paralytic polio have symptoms of PPS.[1] The median age of polio survivors in the United States is 48 years so the prevalence of PPS and the need for treatment will only increase over time.[3] These patients have generally not been treated by health professionals who are comfortable or conversant with polio as a chronic disabling condition with delayed manifestations.[5]
Symptoms (% of PPS patients with symptoms)
- Fatigue (83-91%)[4],[5],[6]
- Joint and muscle pain (71 86%) [4],[5],[6],[7],[8]
- Muscle weakness (87-95%)[4],[5],[6]
- Psychological Stresses [6]
- Cold Intolerance (29-56%) [6],[8]
- Respiratory Insufficiency (39-42%)[4],[8]
- Difficulty Swallowing (10-20%)[9]
SYMPTOMS Emg studies can confirm the history of acute poliomyelitis but no tests can reliably diagnose PPS. The diagnosis is based on clinical findings.[4],[5] Those who have experience with PPS generally agree that symptoms have qualitative features that are reasonably characteristic.
1. Fatigue (83-91%) Described as: “hitting the polio wall” [4],[5] “lack of energy”, “lack of desire to do things” [4] “heavy sensation in the muscles” [4] “increasing loss of strength during exercise” [4] “flu-like aching with change in energy and endurance”[5] Fatigue tends to get worse as the day goes on.[5] 2. Joint and muscle pain (71 – 86%) Due to years of overstress of joints, ligaments, and tendons and overuse of muscles.[4],[7] Muscle pain is usually a deep, aching pain but may be “close to the surface”, “crawling” or cramping”[5] 3. Muscle weakness (87-95%) Diagnostic Criteria For Post-polio Muscular Atrophy (PPMA)[4] 1. A credible history of poliomyelitis. 2. Partial recovery of function. 3. A minimum 10 year period of stabilization after recovery. 4. Subsequent development of progressive muscular weakness. New atrophy appears in fewer than half of the patients with new weakness.(28-39%) [5],[8] Weakness can occur in muscles that had symptoms during the original polio (69-88%) or in muscles that did not appear weak during the original polio.(50-61%)[4],[5] New weakness is often random and scattered.[5] 4. Psychological Stresses (causes increased symptoms in 62-70%)[4],[5] – difficulty concentrating and collecting thoughts when fatigued[4],[5] – recurrence of a supposedly old resolved problem[4],[10] – lack of diagnosis from the medical community[10] – Type “A”, independent, perseverent, obstinate, detached, creative, denying of limitations “polio personality” makes life-style changes difficult to accept.[5],[6],[10] 5. Cold Intolerance (29-56%) Increasing fatigue and weakness when exposed to cold.[4] May have coolness and colour change to a violet hue of the effected arm or leg.[4] 6. Respiratory Insufficiency (39-42%) More common in people who needed ventilator during the acute polio.[4],[11] 7. Difficulty Swallowing (10-20%) Food sticking, coughing or choking with swallowing.[9]
MANAGEMENT Treat complicating medical problems (including anemia, thyroid, obesity, infections, diabetes, etc.)[4],[5]
1. Excessive fatigue Energy conservation measures, rest or sleep breaks (sleep decreases fatigue better than rests.)[4],[12],[13] Overexertion, emotional stress, cold temperatures, and hot temperatures increase fatigue.[6] ?Prescribe or recommend?( B vitamins, eldepryl, pyridostigmine[5], amitriptyline.)[4] None of these has been fully tested. 2. Muscle and joint pain and joint instabilities Overexertion, emotional stress, cold temperatures, and hot temperatures cause increased pain.[6] Decrease mechanical stress on joints[7] weight loss[4],[16] decrease in activities causing overwork (pain,burning, aching) [4],[5],[12],[13] Return to using assistive devices (including orthoses, wheelchairs, adaptive equipment) [5],[7],[12],[13] Anti-inflammatory medications (use sparingly so patients do not continue to overuse damaged joints and muscles)[5] Massage[4] Evaluate orthopedic disease[4],[7] 3. Muscle Weakness Do or arrange muscle strength testing[5] and EMG studies[5] Overwork of weakened muscles will result in more weakness.[4],[6] Overexertion, emotional stress, cold temperatures, and hot temperatures cause increased weakness[6] Decrease physical stress on muscles and joints[4],[12],[13] Prescribe non-fatiguing (sub maximal, short duration) strengthening exercises[13],[14],[15] Stretching exercises to maintain flexibility [4] Heart and lung conditioning[4] ?follow creatine kinase[4],[5] 4. Psychological counseling and support Make the diagnosis[10] Contact local polio survivors’ group [6],[10] Encourage adjustment to required lifestyle changes[4],[10],[16] Weakness, fatigue, muscle pain and joint pain improved or resolved in those who complied with suggestions for life style changes.[16] Assess sleep disturbances (consider depression[5],[10] or sleep apnea)[4],[5],[11] 5. Cold Intolerance (29-56%) Insulate from cold.[17] In cold weather dress for temperatures about 10 deg. C colder than the actual temperature. 6. Respiratory Insufficiency (39-42%) Pulmonary function tests +/- referral to Pulmonologist[5],[11] Pneumovax and Influenza vaccines[4] Eliminate smoking[4] Treat obstructive disease[4] Treat sleep apnea[4],[5] Assist ventilation if necessary.[4],[5],[11] Treat secondary heart failure[4],[11] 7. Difficulty Swallowing (10-20%) Refer to specialist for assessment[9]
_______________________________
FOOTNOTES:
[1] Windebank AJ, Litchy WJ, Daube JR, Kurland LT, Codd MB,& Iverson R.. “Late effects of paralytic poliomyelitis in Olmstead County, Minnesota.” Neurology 1991;41:501-507
[2] Saskatchewan Provincial Laboratory. Certain Communicable Diseases Reported Annually Since 1905.
[3] Bruno R. “Post-polio sequelae: Research and treatment in the second decade.” Orthopedics. 1991; 14:1169-1170
[4] Jubelt B & Drucker J, “Post-polio Syndrome: An Update,” Seminars in Neurology; Sept. 1993, Vol 13, No. 3,283-290
[5] Halstead LS, “Assessment and differential Diagnosis for Post-polio Syndrome;” Orthopedics. 1991; 14:1209-1217
[6] Bruno RL, Frick NM. “Stress and ‘Type A’ behavior as precipitants of post-polio sequelae.” In Halstead LS, Weichers DO, eds. Research & Clinical Aspects of the Late Effects of Polio. White Plains, NY: March of Dimes Birth Defects Foundation; 987:145-155
[7] Smith LK, McDermott K. “Pain In Post-Poliomyelitis – Addressing Causes Versus Treating Effects.” In Halstead LS, Weichers DO, eds. Research and Clinical Aspects of the Late Effects of Poliomyelitis. White Plains, NY: March of Dimes Birth Defects Foundation; 1987:121-134
[8] Halstead LS, Rossi DC. “Post-polio syndrome: clinical experience with 132 consecutive outpatients.” In Halstead LS, Weichers DO, eds. Research and Clinical Aspects of the Late Effects of Poliomyelitis. White Plains, NY: March of Dimes Birth Defects Foundation; 1987:13-26
[9] Buchholz DW, Jones B. “Post-polio dysphagia: Alarm or caution?” Orthopedics. 1991; 14:1303-1305
[10] Bruno RL, Frick NM. “The psychology of polio as prelude to post-polio sequelae; behavior modification and psychotherapy.” Orthopedics. 1991; 14:1185-[11] Bach JR, Alba AS. “Pulmonary dysfunction and sleep disordered breathing as post-polio sequelae: Evaluation and management.” Orthopedics. 1991; 14
[12] Young GR. “Occupational Therapy and the postpolio syndrome.” The American Journal of Occupational Therapy. 1989; 43:97-103
[13] Young GR. “Energy conservation, Occupational Therapy, and the treatment of Post-polio sequelae.” Orthopedics. 1991; 14:1233-1239
[14] Feldman RM, Soskoline CL. “The use of non-fatiguing strengthening exercises in post-polio syndrome.” In Halstead LS, Weichers DO, eds. Research and Clinical Aspects of the Late Effects of Poliomyelitis. White Plains, NY: March of Dimes Birth Defects Foundation; 1987:275-283
[15] Einarsson G. “Muscle conditioning in late poliomyelitis.” Arch Phys Med Rehabil. 1991; 72:11-14
[16] Peach PE,Olejnik S.”Effect of treatment and non-compliance on post-polio sequelae.”Orthopedics.1991;14:1199-1203
[17] Bruno, RL. “Vasomotor abnormalities as Post-polio Sequelae: Functional and Clinical Implications.” Orthopedics.1985;8:865-869
INSIGHTS
by Sharman Collins
He asked, “Mom, what do you miss the most from before, you know, when you didn’t have post-polio syndrome?” I thought for a minute and replied, “taking care of my family. I miss cooking dinners and baking oatmeal cookies. I even miss cleaning the bathrooms and sorting laundry.”
I didn’t appreciate the routine chores of life before post-polio took command. The sweet smell of clean clothes. A sinkful of suds and dirty dishes. I feel blessed now to be able to put a few dishes in the dishwasher before the pain takes over and makes me stop. Memories of beautiful vegetables and fruits and aisles of food to choose from elicit feelings of loss. I haven’t been in a grocery store for over two years. My arms and back won’t let me lift items from a shelf to a cart or even to my scooter basket. And my limited energy forbids the luxury of going withsomeone else.
I know I am fortunate to be able to afford household help to do the work I can no longer do. But, friends who comment how much they would like to tell someone else what to fix for dinner or what part of the house to clean don’t understand that they have a choice. I cannot, no matter how badly I want to, vacuum the rug. And when you have no choice, it hurts. If I spill a glass of juice and try and clean it up, I know I’ll pay for that movement in pain. Forced dependence on others is humiliating and requires a constant giving-up of pride.
When in junior and senior high school, I thought I was super-clutz. Being the last one picked for teams in softball, kickball, and volleyball was degrading. I can still feel the churning in my stomach when I think about the embarrassment. I just did not realize that I was weak from my original polio. I looked so normal. In college, I earned a “D” in bowling. I couldn’t roll that ball down the lane. My brother and cousins waterskied in the summer. I tried and tried and never did get up on those skiis.
Once my youngest son was in pre-school, I decided it was time to “get in shape.” I started with aerobics classes. Success! An athletic activity I could do! From there, I went on to jogging. When my back started to bother me, I lifted weights. And I did get strong. Strong enough to ride a bicycle 150 miles a week. Strong enough to ski every weekend all winter long with my friends and family.
Determination fueled everything I did. My success in these activities made up for all the embarrassment I felt as a kid. I loved every pedal stroke, every ski run, every thrill and spill of it. And then, crash! My body betrayed me. It just quit working. And now I miss the fun of all of the movement. The sliding, slipping, flying, freedom of movement. Speeding down a steep hill on skiis or a bike gave me a heady rush of adrenalin.
If I have learned anything from losing so much, it is to appreciate so much. The sweet smell of flowers in spring. The crunch of leaves under my scooter wheels in the fall. The sharp cracks of breaking ice over puddles in the winter. The ever-present affection of my two dogs. The chance to take a slippery ride down a waterslide. The skillful dodging of pedestrians in the mall on my scooter. Simple pleasures.
My friendships are deeper. They aren’t based on shared activities as much as shared beliefs. The Lord has blessed me with profound spiritual growth and a depth of compassion for others that wasn’t there before. Friends value me because I am “me” and not because of what I can do. Would I want my life to return to exactly the way it was before my body crashed with post-polio syndrome? I don’t t hink so. I didn’t appreciate what I had. More importantly, I didn’t know what I lacked.
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 at:
http://www.eskimo.com/~dempt/polio/l
America On-Line has a disABILITIES forum and a post-polio chat room on Tuesday nights.
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.
Sharman’s News
from Sharman Collins
The Christmas luncheon at the Red Lion Inn was a blessing to all who were able to attend. A heartfelt THANK YOU goes to Dave Graham, Ron Haak, and Linda Scott for their work! The lunch was delicious, the entertainment spectacular, and the candies scrumptious. Linda made beautiful Christmas ornaments as party favors for everyone. A great time was had by all!
I am looking forward to seeing you on January 23rd for our first meeting of 1996! Bob Paull, P.T., will be our guest speaker. He is very knowledgeable about post-polio syndrome. The original damage done by the polio virus to the central nervous system and how that damage predisposes us to the onset of post-polio syndrome will be among the topics of discussion. Bob, as a physical therapist, offers valuable treatment options for us all.
I’ll see you at 6:00 p.m. at Shriner’s Hospital in the 5th-floor auditorium. Shriner’s Hospital is located at W. 911 5th Avenue. Enter the free parking garage on 5th. There is easy access to the auditorium and the 4th-floor cafeteria. If you are able to eat in the cafeteria with us before the meeting, please arrive by 5:00 p.m. Eating dinner together gives us extra time to visit and get better acquainted!
Lots of love to all of you
and best wishes for the New Year!
Sharman
“Those in favor of eating all the food now, raise your hand”
PEN & Ink Link
Do you have a question or a need? An answer or gadget? Phone Elinor, (509) 238-4812 or write P&I Link N. 24104 Jim Hill Rd. Chattaroy, WA 99003
For Sale: Genus 3 wheel scooter with basket. Used very little. Was $3500. new. Asking $2000. Phone (208) 623-5048.
A few issues ago we asked for you to be on the look-out for lift equipped vehicles and notify us if one came to your attention. We also asked you to let us know if you need one. As of this writing, one of our members has notified us of such a vehicle, and we are attempting a “link” with one of the many who need one. YES!! This column can work!
Linda’s Library
A unique and valuable resource for anyone interested in post-polio syndrome from Linda Scott.
HAPPY NEW YEAR EVERYONE! Take advantage of the resources we have in our library to better understand PPS and deal with it. Look around you and ask, “What would make this (task or hobby or personal routine) easier for me”? Make one of your 1996 resolutions: Take charge of my PPS.
A portion of the library is on display and available at meetings of Polio Outreach of Spokane.
For your specific needs and interests please contact Linda personally.
New In The Library
A SUMMER PLAGUE: POLIO AND ITS SURVIVORS by Tony Gould, a polio survivor living in Great Britain. The first half of the book is the long, long history of Polio, the politics and programs of FDR and a cruise with both Drs. Salk and Sabin between New York and England. The second half is the finely woven personal story of Mr. Gould with twenty U.S. and British polio survivors.
Handouts By Mail
WORKSHEET to assist you in making the decision about which wheeled aid is best for you. This worksheet, courtesy of R & S Wheelchair Repair/Sales, addresses your physical needs, transportation and funding. This worksheet will help with the emotional side of choosing a wheeled aid. Remember, a wheeled aid can save you energy and enable you to go to the fair, mall or grocery store.
INNOVATION & ADAPTION to the Challenges of Everyday Living, presented by APPA member, Carol Penn. A no-nonsense approach to saving our energy for the fun things in life, by using aids that are reasonably priced and readily available. .
THE LATE EFFECTS OF POLIO: from Taming a Mysterious Syndrome to Managing the Ravages of Time, by Frederick Maynard, MD. A very knowledgeable home guide for the polio survivor on all the topics we have questions about. If you’ve not requested a handout before, this is definately the one you should start with. Don’t forget to share it with your medical professional.
CATALOG LIST: the list of all 27 useful-product catalogs we have in our library. The catalog title, 800# or address and a brief contents summary are included. I’m familiar with the contents of these catalogs. Call me if you have a particular item or task that you need an aid for and I’ll direct you to the company that offers it. If you have found a catalog with helpful products that is not on the list, let me know and I’ll add it.
Articles that have been listed in past issues continue to be available.
Contact Linda Scott – 1320 N. Hollis Spokane, WA. 99201-3012
Services To Request
STA (SPOKANE TRANSIT AUTHORITY) offers Paratransit service, commonly called SASTA, to people with disabilities in the City of Spokane, Cheney, Medical Lake, Airway Heights, Millwood and Fairchild AFB. A letter explaining service areas comes with a Paratransit application available from STA by calling (509) 328-1552 or writing to Paratransit Transportation Manager at STA 1320 W. Boone Ave. Spokane, WA 99201
With winter here, make travel less stressful by letting a professional transport you to the mall or museum or Polio Outreach Support Group meetings.
I just hate it when my foot falls asleep during the day, ’cause I know it will be up all night.
PEN & Ink
Mailing to over 450 people in North America, to provide experience-based advice and emotional support for polio survivors,family & friends.
Dave Graham – Editor 508 Shoreline Dr. Liberty Lake, WA. 99019 (509) 255-6131; fax (509) 255-9101
E-Mail – DAVID508@aol.com
Sharman Collins 9425 W. Fruitvale Rd. Cheney, WA. 99004 (509) 838-1689
E-Mail – sharmancollins@integrityonline4.com
Elinor Young 24104 N. Jim Hill Rd. Chattaroy, WA. 99003 (509) 238-4812
E-Mail – elinor@triax.com
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 no longer 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