On page 2 – Bruised Reeds by Elinor Young
On page 3 – Expecting Visitors Event news from Dave Graham
&
The Computer Connection
On page 4 – Polio In Perspective
On page 5 – New in the Library & Hand Outs by Mail
More goodies from Linda Scott
P&I Link – Do you have a need or something to offer??
On page 6 – Organization Information
Sharman’s News
from Sharman Collins
FALL IS HERE! I hope everyone enjoyed the summer weather that we did have. The season was far too short for me! I will be looking forward to a long, warm autumn with a lot of pretty leaves to ride my scooter through!
We are planning our third annual picnic for Saturday, September 23, at 11:00 a.m. Alex and Ann Looms will be our hosts! If you would like a map showing the location of their home and information on what to bring, contact Alex or Ann at 1-208-772-4917. This will be a lot of fun and we are looking forward to seeing all of you there! Please call as soon as possible and let them know if you will be able to attend!
Dr. Sam Joseph, our guest speaker on September 26th, is a pulmonary specialist from Rockwood Clinic. His discussion will center around possible respiratory problems in persons who have had polio.
On October 24th, Bob Paull, P.T., will speak to us about causes and symptoms of post-polio syndrome and how a physical therapist can be an important member of your health care team.
Steve Whitley from R.S.Wheelchair Repair visits our support group on November 28th. Steve has a lot of information to share with us about scooters, wheelchairs, and lifts, etc.
As you can see, we have some very informative meetings planned for this Fall! We are looking forward to seeing you.
And, just for fun of it, the following are some excerpts from Barbara Johnson’s book, ‘What You Can Do When Life Falls Apart, PACK UP YOUR GLOOMIES IN A GREAT BIG BOX, Then Sit On The Lid and Laugh!’ This book is in our library and I guarantee it will put a smile on your face and some warmth in your heart.
Somedays you’re the bug, somedays, the windshield.
Money isn’t everything, but it sure keeps the children in touch.
Life is like an icecream cone: just when you think you’ve got it licked – it drips all over you!
Just for today I will try to live through this day only and not tackle my whole life problem at once. I can do something for twelve hours that would appall me if I felt that I had to keep it up for a lifetime.
Lots of love from your friend,
Sharman
Bruised Reeds
by Elinor Young
I just came in from grooming the pansies on my patio. One plant was yellow and dried up, but a two-inch piece was green and valiantly trying to root where it touched the ground. I stuck it in the ground, hoping it will grow and bloom.
While doing that, I recalled one nice Spring day when I was a young girl. I had walked to the farm next door and saw my aunt by her house. She was thinning snap-dragons, pulling up the small, crowded ones. The sun had already wilted some where they lay on the ground. I asked, “Aunt Martha, may I have those flowers?”
Despite her warning that they wouldn’t live, I carried the limp seedlings home and gently planted and watered each one. Eventually they burst into a happy display of blooms.
Somehow, recalling that story made me also think of Songmag.
Songmag, a Kimyal village girl living in the high mountain valley of Korupun, Irian Jaya, Indonesia, started doing house-work for me when she was 12. Neno, a boy of 15, did laundry and yard work.
Village leaders ended Songmag and Neno’s employment after a few years, when they stole some things. They were married, turned their lives over to God, and I could see some genuine changes of heart.
The next year, at age 15, Songmag had a baby boy. But something was wrong. She took her baby to Jessie, an Australian nurse who was my colleague. The little boy had no skull from above his ears and brow ridge; only skin covered his brain.
Kimyal babies are kept and carried in net-bags lined with leaves, grass and pandanas-leaf rain capes for wind-break and rigidity, so the bag doesn’t squeeze the baby too much. But that was scant protection for this baby. Jessie didn’t expect him to live more than ten days.
Songmag was heart-broken. Her love for her baby boy cut directly across Kimyal cultural values.
Defective, unwanted or twin babies were always thrown into a cold swift river. Songmag was taunted, “Throw the baby into the river. He’s no good.” She and Neno were told, “It’s your fault. It’s punishment for stealing. Throw him away.” Worse, Songmag was ostracized, the ultimate rudeness to be endured in Kimyal culture. Neno quietly loved and supported his young wife. Day after day I saw her on the trail without a companion and in her gardens with no one working beside her. Always her netbag was on her back, carrying her child. His unprotected brain often caused seizures, and Songmag would rush him to Jessie. Jessie could do little for the baby, but she did try to calm and console Songmag. Incredibly, the baby lived six weeks.
How did these two teenagers carry such a huge burden, withstanding that tremendous cultural pressure? They found their strength in the Lord.
When God asks, “May I have you, may I have your life?” even if we reply, “Yes, but you’re not getting much,” the Bible still promises, “A bruised reed he will not break, and a smoldering wick he will not snuff out. In faithfulness he will bring forth justice.” (Isa. 52:3) Those words reassure me when I feel our culture’s sometimes degrading attitudes towards people with disabilities. You know what I mean – those times when you wonder if you have letters across your forehead that spell “unworthy.” If your life is in God’s hands, He isn’t going to throw you in the river, or even leave you to wilt and die in the sun. People may, but “in faithfulness He will bring forth justice” in the end. I don’t know about you, but to me, that’s a tremendous comfort.
________
Before post-polio syndrome, Elinor Young spent eighteen years in the wilds of Indonesia serving as a Missionary to a previously cannibalistic people. Her perspectives on life give us a special comfort in our own hours of trial and discomfort.
Expecting Visitors
by Dave Graham
Have you ever gone on a blind date?
Did you ever have a pen pal, someone with whom you communicated but had never seen face-to face?
If you have, can you remember the anxious anticipation you felt when you were finally going to meet your friend?
It is this sort of anticipation that we are feeling now. Let me explain.
One day last winter, while sitting at my computer, I innocently ventured out into cyberspace. More accurately, I subscribed to an on-line service which gave me access to the internet. There I learned to use E-Mail and soon was communicating with people all over the world. I ‘surfed’ until I found some folks just like me, with whom I had a great deal in common. They were people who had childhood polio and were now experiencing the symptoms of post-polio syndrome. They were all part of a ‘newsgroup’ or ‘mailing list’ which is an internet community of people who communicate regularly with each other. There I found unique friendships with people that had also experienced polio problems, treatments, pain and victories. These folks were like few others that I have known.
I have never seen them, and yet we have shared personal conversations. It is a very special relationship.
Since discovering this group, some of our other Spokane Polio Outreach people have signed on. There are five of us now and we are excited because some of our cyber-friends are coming to Spokane to see us. We are expecting folks from the three Western states.
Our first day together will be September 23rd. That is also the day of our Polio Outreach picnic at the Loom’s house. We are planning to give our guests a warm welcome and introduce them to our Spokane support group.
Our friends are also planning to attend the support group meeting on Tuesday, September 26th.
Mark your calendar and plan to be part of our get-together.
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 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 disABILITIES forum and a post-polio chat room on Tuesday nights.
(From)
POLIO IN PERSPECTIVE FOR 1995
With Dr. Jacquelin Perry Reported by Mary Clarke Atwood
Jacquelin Perry, M.D. is Chief of Pathokinesiology and Polio Services at Rancho Los Amigos Medical Center. The full paper is available in the library of Polio Outreach of Spokane.
DIAGNOSING PPS
Dr. Perry bases a diagnosis of PPS on three things:
1. a history of polio;
2. a period of some recovery followed by new loss of function;
3. a physical examination that reveals: A. scattered muscle weakness (observed during an extensive manual muscle test from head to toe); B. normal sensations; C. reflexes that are normal (2+) for strong muscles and depressed for weak muscles.
MUSCLE MATTERS
* Recovered muscles (post-polio) are less efficient since there are fewer motor units as well as larger motor units.
* If muscle weakness is revealed on a manual muscle test of the upper leg, probably 1/3 to 1/2 of that muscle has been lost.
* The weaker the muscle, the less frequently it should be used.
* Every muscle can be overused – even those of athletes and marathoners!
* If you do not have strong enough muscles for normal activities you cannot do the same activities as people with normal muscles.
For normal muscles only 20% of the fibers are at work at any one time so there is less fatigue. For polios, some muscles’ fibers may be working 100% at any given time so they get no rest and fatigue very quickly. If less than 20% of the muscle fiber is working at a given time, the muscle gets full oxygenation and works fine. As the percentage of muscle fiber in use increases “the less rest they get, the less oxygen they get, the less they have a capacity to repair themselves.”
LIFESTYLE MODIFICATION
* “If you have symptoms, you modify your lifestyle and remove the strain.”
* Find ways to make tasks easier or get rid of the tasks.
* Break up activities with rest periods.
* Stop doing heavy tasks.
* Extra body weight is like carrying around a spare tire. The recommendation is to reduce body weight by re-educating your taste buds.
* Don’t forget that PPS is due to accumulated strain from chronic overuse. “So get rid of the chronic overuse.”
* Dr. Perry’s motto: “Be an Intelligent Hypochondriac!”
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
MAXIMIZING YOUR PSYCHOLOGICAL AND PHYSICAL POTENTIAL, a video of the 1st NY Polio Education Conference held in April, ’95. It includes M.E. Backman, PhD and S.L. Fish, MA, PT. 2 Hrs.
Handouts By Mail
WINTER IS ESPECIALLY HARD FOR POLIO SURVIVORS, by E. Hudak. A PP’s personal perspective and a page of “keep warm” tips with 800 #’s to call for catalogues of “keep warm” items.
CHANGING YOUR LIFE BY CONSERVING ENERGY, by M.J. Matheson MD. Dr. Matheson has PPS and has updated this article in 1995.
MORE FACILITIES AVAILABLE FOR THE PHYSICALLY IMPAIRED, newspaper article about public recreation areas in Washington, Oregon and Alberta.
Items to send for
Self Care Catalog, Products for Healthy Living, 1-800-345-3371
Packet of information on TALKING BOOKS, available by mail (including a cassette player if you need it) without charge. Write to: National Library Service for the Blind and Physically Handicapped, Library of Congress, Washington, DC 20542. This is a great help for us when holding a book is too much effort. A sample packet will be added to our library.
Articles that have been listed in past issues continue to be available.
Contact Linda Scott – 1320 N. Hollis Spokane, WA. 99201-3012
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.
Two people wanting a lift-equipped van put their names on the contact list, but no one has called to say they’ve heard of one for sale. If you do, PLEASE let us know so we can pass the info on. These vans are rare and much needed!
Invacare wheelchair, lightweight, pneumatic tires, excellent condition, $1200. new, asking $450. – (509) 534-4653.
FREE from Evi – (509) 326-3234 – One high-john toilet seat. One walker.
LINK has information regarding a used (but in good condition) wheel-chair lift for a van. New cost was $4000, selling for $1800. The same source has a rugged (go nearly anywhere) power wheel chair that sat unused in a warehouse for two years. New price would be $6000, selling for $1800.
PLEASE MAKE A NOTE OF IT
The next meeting for Polio Outreach will be Tuesday September 26th at the Shriners Hospital at 6:00 p.m.
Those wishing to eat in the cafeteria prior to the meeting, please arrive by 5: p.m. and be served before 5:15. Fellowship in the auditorium begins at 5:40. Enter the free parking garage on 5th Avenue. There is easy access to the auditorium on the 5th floor, cafeteria on the 4th.
Support Group Picnic
Coming up Saturday September 23, 1995 our group will stage it’s third annual picnic. The event will be held at the forest home of Ann and Alex Looms in Hayden Lake. Plan now, mark your calendar. Then call the Looms at (208) 772-4917.
They will provide you directions on how to get there and tell you what you can bring. Good eats, music, and fellowship. Don’t miss it!
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.
Dave Graham – Editor 508 Shoreline Dr. Liberty Lake, WA. 99019
(509) 255-6131
Sharman Collins 9425 W. Fruitvale Rd. Cheney, WA. 99004
Phone (509) 838-1689
Elinor Young 24104 N. Jim Hill Rd. Chattaroy, WA. 99003
(509) 238-4812
Because you asked…
Because PEN & Ink is financed by the annual Firecracker Golf Tournament, it comes to you free of charge – which delights its all-volunteer staff.
Now and then someone asks if they may please contribute to PEN’s funds. If this describes you, we say, “Yes, 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, so we can keep our mailing list efficient.
P.E.N. & ink For Polio Survivors & Friends 508 Shoreline Drive
Liberty Lake, WA. 99019