In This Issue:
Sharman’s News, Sharman Collins
“On Not Eating Dust Too,” by Elinor Young
ACCESS Spokane (Dave Graham)
Subscription & Donation information
The P.E.N. & ink Link
“We Didn’t Talk About It,” by Dave Graham
“End of an Era,” by Sharman Collins
“Some Advise About Scooters,” by Christine Woodell
POS Library
Sharman’s News
…..I’m looking forward to those lazy days of summer. Swinging in the hammock, sipping lemonade, and watching the Pend Orielle River flow by. Sound like great summer activities to me! I hope you are all able to get outside and enjoy the sunshine.
…..On July 22, Craig T. Hunt, a local registered dietitian and nutrition coach, is scheduled to speak to us about principles of weight loss and nutrition. Perhaps you have read Craig’s regular column in the Spokesman-Review. Craig’s contagious enthusiasm will be an encouragement to all of us. I’m looking forward to listening and learning more about nutrition and I hope you are, too.
…..Our summer picnic is on Saturday, JULY 26 at CAMP CARO at 3:00 to 7:00 p.m. Ron Haack and Dave Graham will provide musical entertainment. This is a potluck–everyone needs to bring a main dish, or a salad, or a dessert. The lodge has kitchen facilities but not barbeques. Please bring your own paper plates, utensils, and beverages. It is important that you RSVP by July 23. Call Ron or Kay Haack at 926-7319 after July 16 to let them know if you are coming and what you are bringing.
…..The park is fully accessible and easy to find. From Interstate 90, take the Argonne Exit and proceed south. Upon reaching Sprague Avenue, turn west (right). At approximately the 8700 block of Sprague, you will see Spokane Yamaha and Appleway Toyota on the south side of the street. Between those two businesses is Sargent Road. Turn south (left) on Sargent and continue over the hill to the park. WE WILL NOT HAVE A REGULAR GROUP MEETING IN AUGUST. There is an informal brown bag lunch get-together scheduled on Saturday, August 23 at 11:00 a.m. We will meet in Manito Park across from the duck pond. Please call Rosa Kent at 747-6541 and let her know if you are coming. I’m looking forward to seeing you at the July 22 meeting, the July 26 picnic, and the August 23 brown-bag lunch! …..The July 22 meeting is at the usual place–Shriners Hospital in the 5th floor auditorium at 6:00 p.m. 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.
Much love from your friend,
Sharman
On Not Eating Dust Too
by Elinor Young
Each evening I take off the braces that stabilize my knees and ride Cousin Minnie Pearl around the house. She is a reflection of part of my philosophy on life with post-polio syndrome.
Before I get into this any deeper, I’d better explain what I’m talking about.
Last summer Gutless Wonder died. He was a dinosaur Amigo scooter that was given to me to use indoors. Before GW all I had was Babe the Blue Ox, a rugged Fortress scooter which works great on my adventures through woods and over hill and dale, but is clumsy indoors. Gutless Wonder was ugly and pokey, but he did corner well. When he showed signs of imminent demise, I called Steve-the-scooter-man and asked him if he had a used scooter that would fill the bill for me indoors. He brought one for me to try out. It worked fine, but was uglier than Gutless Wonder, if that is possible. I mean yuk! Black and gray, it seemed to intone, “Basic mobility device.” It is that, but there is no reason why it had to be ugly about it. I’d had enough of that with Gutless Wonder. I told Steve I’d take this new used scooter if he could de-uglify it. “It’s got to say, ‘Happy! Fun!’ when I look at it,” I explained. If it could be reupholstered in a pattern with pink in it, and if Steve would paint everything paintable hot pink, I’d buy her. “She’s going to be Cousin Minnie Pearl,” I said. This was a new kind of request for Steve, but he really got into it — eventually even getting her pink battery straps. Is she ever spiffy! She not only gets me around, but she also does it with style!
Not needing scooters as much as I did before my treatments at Futures Unlimited, Inc.,1 I’m walking a lot now, using two aluminum underarm crutches. I had them cut off just below the handles on one side. This makes them lighter and also counter-balances them so they swing forward almost on their own. It’s fine that they work well, but they’ve got to be more than utilitarian. I went to two bicycle shops and bought some colorful handle-bar tape and wrapped them. The long side of each is marbled red and black, and the short side is marbled blue, purple and white. Wild! Neither shop had enough of one pattern to do the whole job. But the effect is just what I wanted — for now. They’ll probably be a different color and pattern by the time you read this. They are crutches, sure, and help me get where I want to go. But must they do it in standard aluminum? Not mine! I want them to do it with pizzazz.
Are you catching on to the philosophy I mentioned earlier? It was best said recently by a logging-truck driver. Hundreds of trees in our pine forest up the hill from the house were damaged during last November’s Ice Storm. They had to be cleaned up, so we hired some loggers. The best way for them to get up there was to make a road on the edge of the barley field that skirts my yard. The prevailing wind blows from that side of the house. While the loggers were working I didn’t dare open windows. Every time a truck drove by, dust rolled in, thick clouds of it. But one day a driver/folk-philosopher stopped to talk. He asked, if he could turn sharply enough by the mailbox, could he use the driveway on the other side of the house? He was concerned about all the dust blowing in on me. “Bad enough being crippled,” he said, “without having to eat dust, too.”
Don’t you just love it?! Now, there is a guy who doesn’t call a spade a “weed extraction device.” Political correctness somehow left him in the dust, so to speak, and let his big heart shine through with no artificiality. How refreshing!
Yes, indeed, call me physically challenged if you like (while you’re at it, also try “linearly challenged” in place of “short”), but I’m tired of the politically correct stuff. I’m not trying to hide the plain truth. I need a scooter at night when my braces are off and I need crutches during the day when my braces are on. But I’m not going to use ugly depressing ones. I’m going to have fun, using what has style and pizzazz. As the man said, “Bad enough being crippled without having to eat dust, too.”
____________________________
1. Futures Unlimited, Inc., Columbus, MS (601) 327-7333
ACCESS Spokane
………………………………………………………………………..Written by Dave Graham with help from these organizations:
………………………………………………………………………..C.O.R.D. (Coalition of Responsible Disabled)
………………………………………………………………………..National Multiple Sclerosis Society
………………………………………………………………………..Easter Seals Society of Washington
………………………………………………………………………..Washington Assistive Technology Alliance
………………………………………………………………………..Spokane Transit – Polio Outreach of Spokane
………………………………………………………………………..Washington Governors Committee on Disability & Employment ………………………………………………………………………………….Client Assistance Program – Senior Wellness
………………………………………………………………………..and the St Luke’s Rehabilitation Institute
It is astounding to me to see so much new construction going on in our area. It seems everywhere you look there is a new store going in. For consumers it is exciting. For disabled consumers it is wonderful! Our course, I am referring to the fact that new structures are built to the ADA (Americans with Disabilities Act) standards.
Recently I was on a trip to a part of our country that has seen very little new building for some years. The contrast was stark! Barriers to my mobility were everywhere. It was sure a pleasure to arrive home where I am free to wander. — Speaking of new stores, the new Huckleberries Stores have a service that may help you. They are offering to deliver their foods and products to your door. For an order of up to $200 their delivery fee is $8.95. They have special hours and a few simple conditions for this valuable service. Call (509) 928-3687 — Looking for something fun to do? How about a an excursion to Post Falls, Idaho. The city is to be congratulated for making the Falls Park handicapped accessible, with rest rooms, picnic facilities, trails and great viewing areas. Take exit #5 off of I-90. If the gates are open you will feel the awesome power of water. The local Historical Society has pitched in with story boards which tell of the early days of Mr. Post and his falls. I highly recommend it. —
I recently saw a unique feature in the Spokane Spokesman Review. It is called The Clothesline and it appears weekly.
What caught my eye was four listings, services that design clothing for people in wheelchairs or who have other disabilities. Contact:
………………Rolli Moden (800) 707-2398
………………Ultimate Style Apparel (800) 9355170
………………Creative Designs (800) 335-4852
………………Easy Living (800) 665-1976 —
My favorite season of the year is autumn, hunting season. I have hunted all my life and my disability has not curtailed that activity.
The Washington Department of Fish and Wildlife has a special program for people like me. Along with the Inland Northwest Wildlife Council they promote barrier-free hunting, fishing, and camping. They are designing special areas for just such activities. One such area for fishing is Bear Lake where they have an accessible dock, rest rooms and trails. For hunting there is the Big Meadows Unit where individuals, with a special permit, can enjoy the sport I love.
For more information about these programs contact the Washington Department of Fish & Wildlife at (360) 902-2464 or Ric Villalobos through the I.N.Wildlife Council at (509) 487-8552.
Again we thank…
all who responded to our request for voluntary donations in the last two issues. In response, we received one half of what we need for the next 6 issues (one year) of P.E.N. & ink!
………………Remember, if you are unable to donate, that’s OK; we’ll keep mailing to you as long as we have funds to do so. If you didn’t do so before, please fill in and mail this form to:
………………Polio Experience Network – 508 Shoreline Dr.- Liberty Lake, WA 99019.
Name ____________________________Address______________________________Zip__________
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P.E.N. & ink, but cannot make a donation at this time.
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P.E.N. & ink Link … a link with each other
Needed: an over-the-bathtub seat and an extra wide wheelchair. Phone (509)326-3234 —
Does anyone know of the whereabouts of Arnold Jenkins, about 52 years of age who had polio in 1951 and was hospitalized at Sacred Heart Hospital in Eugene, Oregon. If so, please advise Karen,
K2L1BRP@aol.com. Thank you.
You tell us: “You have given me inspiration so many times as I have read your comments … during this long two years, I have turned to God, as always, for more strength, love and guidance … Thanks again for sharing and “being there” for me, and I am sure for many others.” — M.
“I am the facilitator for a small post-polio support group. Your newsletter has been very helpful to me and I have used some of your articles in mine. I hope this is okay.” –H.
Yes, indeed it is OK!
Together we can help more folk than we can alone.
Do you have a question, comment or a need?
Write to: P&I Link, N. 24104 Jim Hill Rd., Chattaroy, WA 99003.
Or E-Mail polionet@polionet.org
We Didn’t Talk About It
by Dave Graham
Each neighborhood had it’s ‘crippled’ kids. In our little section of South-East Portland it was me on 54th avenue and Bobby VanPelt who lived up on 57th. Back then, nobody talked about that much.
Each neighborhood had it’s incomplete families, the kids who’s Dad didn’t come home. They were either killed in the war or something else. Frankie Brown down on Division Street was one of those, but we didn’t talk about it.
There were lots of things that people just didn’t talk about; families with alcoholics, husbands that beat their wives and worse. During the 40’s and 50’s it was a cultural thing.
Tragedy seemed to strike almost selectively, sort of like a big lottery that would pluck some unsuspecting victim. When spared, families would cringe at the thought that it could come so close to home, then pray a prayer of thanks for God’s mercy.
Isn’t it interesting how the mind remembers certain things. I know that those times had their share of tragedies, but we lived through them and what now sticks in my memory are not the bad things but the good.
I choose to remember how my family took my disability in stride, encouraging me, enabling me and making me feel just like one of the kids. If God has Saints here on earth they have to be my folks.
I remember how my Dad used to take me to my fourth grade class, every single day, to a school room on the third floor of an ancient building. I was in a wheel chair and each morning he pulled me up those flights only to return and wheel me down at the end of each day.
My Mom was such an enabler. When I could not go to someone else’s home for Cub Scouts, she became a Den Mother and held it at our home.
My grandparents wanted me to learn music. When I was young, they thought that traditional instruments were out so they arranged for me to have whistling lessons.
Yes, I was a ‘crippled’ child, but I can’t remember feeling much different from the rest of the neighborhood kids. I am sure that was because my family chose to not see me as being different. They just helped me over, around and through the things that were difficult for me and they didn’t talk about it.
I could easily end this article right here and many polio survivors would identify with the whole scenario. Unfortunately, this idea of not talking about our difficulties has caused some new problems now that post-polio syndrome has reared it’s ugly head. It is not shameful to discuss our problems as long as we do it in an appropriate way.
Most people know very little of PPS, so I feel it is healthy to speak of it briefly when others may need to be put at ease. We need help from our family and friends once again. I am convinced that they are willing and able to come to our aid. We must learn to properly communicate our needs.
The End of an Era
by Sharman Collins
My fourth son, Chris, graduated from high school this year. For months, I have been acutely aware of the approaching end of an era. What fun I have had over the years being a mom of four energetic and imaginative males. Watching soccer, football, basketball, baseball, tennis, golf–not to mention snow skiing, water skiing, marathons, triathlons–never a dull moment in 27 years of motherhood.
My 21-year career as a baseball mother came to a finale at the State AA Playoffs in Tacoma several weeks ago. A bleacher with my name engraved on it would be an appropriate momento. Depressing thoughts of an empty nest have crept in the last few weeks. Will my home be dull and boring without resident sons? How will I tolerate the mundane activity of day to day housewifing?
Several nights ago, Rob, my 22-year old son who is home for the summer, came into my bedroom and said, “Mom, I don’t think Zenda should clean my room tomorrow.” Zenda, my housekeeper, does a great job vacuuming around obstacles on Rob’s floor.
“Are you going to clean your room?” I innocently ask.
“No, Beck is loose, ” Rob calmly replies.
“WHAT?” I shout. Visions of being strangled by Rob’s five-foot-five-inch boa constrictor, Beck, spring into my head.
“I was holding Beck on my lap and he found a hole in the chair and —whooosh—he is up inside the rocking chair,” Rob related. “And, he won’t come out.”
My face growing pale, I shout, “You can’t leave for work tomorrow with that snake loose! He’ll strangle Bud and Gigi (the resident toy poodles) and then come after me!”
“Calm down, Mom. Beck’s a nice snake. Besides he ate two rats last week and he is full. I’m going to bed now,” Rob said.
“I’ll come and help you get him out!” I leap out of bed and hurry upstairs behind a disgruntled Rob. We spend the next hour up in his room. Rob pulls on Beck’s tail, I yell encouragement. Beck does not budge. Sweat starts to drip from Rob’s brow. It’s now late and I’m tired of watching Rob tug on Beck.
“You aren’t going to sleep in the same room with that chair, are you?”
“Goodnight, Mom,” Rob says in an exaggerated end-of-his-patience voice. “I’ll carry the chair over to Ken and Brian’s vacant room, if that will make you feel better.”
I went to bed, nervously chuckling to myself. And I thought life would get dull? Not as long as my boys are back around here at all! And next year my grandson will start the cycle all over again. Worms in pockets, gerbils running around the house, snakes in rocking chairs!
About 2 a.m., I woke up with visions of the new movie, ANACONDA, on my mind. I poke Ken and ask, “Where do you think that snake is?” I was looking for reassurance.
“That snake is probably slinking around inside the walls now looking for a poodle to squeeze! We’ll never get him out!” he grunted. That was not the answer I was fishing for. Sleepless, I tried to plan how I would save the dogs or myself from Beck. Did I need a knife? Would 911 be the answer?
At 6:00 a.m. Rob came into my room. I woke up long enough to shout, “Where is that snake!?”
“Mom, don ‘t worry. I shut the rocking chair with Beck in it in the upstairs bathroom. He won’t go any further than the bathtub!”
I tiptoed around all day, occasionally checking the space under the bathroom door. No sign of a prowling snake. When Rob came home, he went upstairs to check on Beck. Shortly he came down with the remnants of a rocking chair. “Beck is safe and sound in his cage,” said a relieved Rob. “Of course, I had to cut the chair apart.”
I offered to put an ad in the newspaper, contact Woodland Zoo, or call Northwest Seed and Pet. “Mom, would you sell Bud or Gigi?” he asked, batting his blue eyes at me.
“No, but Bud and Gigi wouldn’t eat me!” I retort.
“Beck likes me and he is a great pet,” he answers, “and, Beck and I will go back to school soon.”
Dull? I don’t think so. In six years, I’ll be back on that baseball field, watching my grandson, Kenny, play T-ball. And maybe I’ll send him home with his worm collection in his pocket.
Some Advice about Scooters
by Christine Woodell
I am a veteran scooter rider with about 8 years under my belt. I wear braces and my choice was partially made by the leg room. I am short, but with braces I still need room to turn forward. I finally found an exhibit at a mall and was able to see several models at once. I am heavy and wanted a heavy-duty and reliable scooter.
I selected a Pacesaver by Leisure Lift. I did not use it daily at first, but things have changed and I put my scooter to hard use now. I am on my second scooter, and have had wonderful performance and great joy from them.
I had gradually narrowed my circle of experience and was cheating myself out of a full life. I could not mingle at social functions, because wherever I sat I stayed! I could not browse, I could not go for “walks”, and worst of all I could not enjoy life with my children.
Please don’t be afraid of a mobility device. It is a way of getting around, like a car or a horse. I wish we could all look first at where we are going and what we are doing rather than the mechanism we use to get there. I can go to the zoo and to the mall. I can “run and get things” for other people. I don’t have to plan as carefully. I can do my job more efficiently.
There are several models, and I have the Pacesaver Excel. It is a little more heavy duty and I feel better balanced. Mine has a long wheel base, which I like especially because of my braces. If you can use the short wheel base model, it will get into smaller spaces.
I have the Bruno lift. It costs about $1500 installed and the new ones are great. I have a very early model, but the new ones are much better, with fewer moving parts. I had to get heavy duty shocks (from NAPA) and cargo coil springs (from Sears) to keep the back end of my car up. You must have a car that will carry a class three hitch. Rear wheel drive is preferable for handling of the car due to lift on the front of the car (from rear weight).
The biggest problem is RAIN. First I tried to cover the whole thing. The cover blew apart. Then I began to just cover the key hole and the seat. Or have someone put the seat in the trunk. There is a part called the MAIN BRAIN and that is not supposed to get wet, but I haven’t had much of a problem there. I just know NEVER LET RAIN GET IN THE KEY HOLE. It makes the thing go crazy.
BUT…I will leave that for the next installment of this saga!!!
Polio Outreach of Spokane Library
Your resource for information on post-polio syndrome and disability issues.
Our librarian, Darlene Hansen, has created this mini-catalog of the library inventory. It is available for your use. Simply write her at 14627 E. Emery Rd., Chattaroy, WA 99003 or or E-mail her at darlenekh@juno.com.
Anesthesia – Medical & Dental Arthritis – Carpel Tunnel Basics of Post-Polio Syndrome Brain Lesions – Encephalomyelitis Cardio-Pulmonary Issues – Dysphagia Coping Diagnosis (some technical, some not) Energy – Fatigue Family Issues and Understanding Gastrointestinal – Diet – Nutrition Orthotics – Ambulation Pain Control Polio’s History- Vaccine- Research- Notable Doctors Psychological & Physiological Aspects of PPS
Therapies – Treatments – Exercise (Including a folder of articles from Ed Snapp &
…….Futures Unlimited, Inc.)
Transportation – Accessible Travel
We have packets/compilation of specific subject on: Women’s Issues Newsletters (our group and others) Addresses and Phone Numbers of disability agencies Bladder control – Fibromyalgia – Sleep Apnea Vehicle Adaptations – Lifts, Accessories
Social Security – Health Insurance Info
We also have : Audio tapes (conferences, individuals of our group, doctors, news reports) Video cassettes Catalogs (of hard-to-find aids) Magazines (relating to disabilities) Packets for Newcomers and another for Physicians
Books (humor, true-to-life, inspirational, nutrition, biographies, etc.)