In This Issue:
Sharman’s News, Sharman Collins
Linda’s Lines, Linda Scott
“The Four A.M. Fears” by Sharman Collins
Computer News
“Birds of a Feather” by Dave Graham
“Good Medicine” by Elinor Young
P.E.N. & ink Link
Our Annual Fund Raiser
New in the Library
Share-A-Ride
Phone Pals
Copyright Information
Sharman’s News
By Sharman Collins
HAPPY NEW YEAR! It’s time for those Resolutions! Maybe you want to drop a few pounds that you picked up over the Holidays. Or you vow to take better care of yourself . . . rest before you are ready to collapse. Or perhaps investigate ways to deal with those aches and pains before you resort too drugs.
…..Our next three meetings will deal with these topics and others!
…..On January 24, 1995, we will be meeting once again at the Shriner’s Hospital at 6:30 p.m. The auditorium is on the fifth floor. If you would like to join us for dinner in the cafeteria, please arrive by 5:15. It’s lots of fun to have that extra time to talk and to look through the library. For our group meeting, we will have a discussion about different ways we have found to cope with pain.
…..Our speaker for February 28 is Dr. Mary Gentile of the Sacred Heart Medical Center Pain Clinic. She will tell us how new patients are evaluated for treatment. Dr. Gentile heads the passive treatment program and she has had experience with patients with post-polio syndrome. This will be an informative program and I’m looking forward to seeing you there!
…..In March, Scott Pritchard, who is a dietitian, will be our speaker. He will make practical suggestions on how we can better control our weight by eating properly.
…..Our Christmas luncheon was so much fun! About 35 people were there and they were already making plans for a summer picnic. Some were even discussing having a small craft show.
…..You can see we have some great meetings planned for the New Year!
…..See you on January 24!
Much love, Sharman
Linda’s Lines
By Linda Scott
MARK YOUR CALENDAR for Tuesday, February 28, 1995. Our Polio Outreach meeting will feature Dr. Mary Gentile of the Sacred Heart Medical Center Pain Clinic.
During a recent interview I asked Dr. Gentile to address the following questions:
“I don’t have pain now, so why should I come hear you speak?”
ANSWER: “To buy time. To look at prevention and to understand that stress-reduction and relaxation techniques help our bodies whether they are in pain or not.”
“I hurt so much, why should I make the effort to hear you speak?”
ANSWER: “You have probably been told to live with it. I explain what that means and provide skills to help you cope.”
The program Dr. Gentile offers at the Pain Clinic requires an eight week commitment from each participant, meeting once a week for two hours in a group setting, with 45 minutes of homework daily. Insurance covers a portion of the fee, but her office offers a sliding scale fee program, so that no one who wants to participate is turned away.
Two of our members are current patients at Dr. Gentile’s clinic.
To prepare for the meeting, may I suggest that you write down your questions and indicate what activity you would like to do if a certain pain in your body went away.
At our January 24th meeting you might also check our a new pain management tape or the new “Pain and PPS” soft notebook.
On page 5 please check out the new library material.
This meeting will have something for everybody. Call Share-A-Ride to offer or request a ride. Denise 926-5192.
If you cannot sit through the meeting, we have floor space for an air mattress or similar device. Please let me know.
We plan to audio and video tape this meeting. We need a volunteer for video.
Think again about requesting the handout The Worsening Respiratory Effects For Post-Polio Survivors. It is meant to educate, not frighten you. Respiratory problems are more than shortness of breath. Dr. Sam Joseph, Pulmonologist, is the local Post-Polio expert. Rockwood Clinic, 838-2591.
Inspiration
The Four A.M. Fears
by Sharman Collins
I frequently wake up around 4 a.m. By then, my pain pills have worn off, and various parts of my body ache, cramp, and twitch. The reality of facing another day of coping with post-polio hits me hard.
Fear is a part of the reality. Losing more strength can be a threat to my ability to even get out of bed in the morning. Having to ask for more and more help from my family changes my own and their perception of my role in the family. Losing that very basic identity as a wife and mom causes a feeling close to panic in me. Do I tell my family the truth about my increasing pain and weakness and thereby take the risk that they will not include me in any of their activities? They are the ones that have to make the choice to change their plans to include me. My body has become my dictator — demanding more and more of my life and excluding me from decisions.
These fearful thoughts race my mind and color my perceptions. It takes all the discipline I can muster to reach out and grab the only hope I have. The Lord reaches down to me with a loving hand and pulls me out of my four a.m. despair. He promises to give me rest from my tortured thoughts.
“Come to me, all you who are weary and burdened, and I will give you rest.” (Matthew 11:28)
“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.” (Lamentations 3:21-24)
I don’t know why He is allowing all these changes in my life, and I don’t need to know. He has promised . . .
“that in all things God works for the good of those who love him, who have been called according to his purpose.” (Romans 8:28)
Computer News
There is a great service on America On-Line. Every Tuesday evening at 6:30 PM there is a person to person discussion about Post Polio syndrome.
It’s a great reason to get on-line. America On-Line is also your gateway to the Internet. If you own a computer and a telephone you can communicate world wide. Dave Graham has introductory packets that give interested parties 10 free hours to try out AOL. Give a call (509) 255-6131.
A Message from the Editor
Our primary goal in publishing this newsletter is to improve the lives of other polio survivors and other disabled people. In keeping with that goal I wan too tell about a special find that has been a real treasure for me. I have found a service that will literally push the walls out for those who have a hard time leaving their home because of physical limitations. There is a huge community, millions of people that communicate from the comfort of their homes through their telephone lines using their computer. Through People Connection they discuss hobbies, interests, share ideas, participate in clubs, tap resources and generally open the barred windows, doors and walls that remain a barrier to the physically disabled. In future newsletters and Polio Outreach meetings I intend to discuss this potential.
Dave Graham
Birds of a Feather . . .
by Dave Graham
As I look back over my life I see periods in which I ran with different groups of people. Each of those groups had a profound effect on me.
I stand in amazement over just how close I came to losing my way.
Do you remember that old song That Old Gang of Mine? Well, as a teen there was just such a group of fellows that I hung around with.
Now today the word gang has a real negative connotation. It reminds us of the wild behavior of people when they run in packs. Even in those early years the collective power that I felt from being with the group was undeniable.
I have too admit, our gang did some things that today I am not proud of. At the time they did not seem so bad because we did them as a group. Somehow our individual responsibility for our actions seemed to vanish in the heat of the moment.
As a young man, there were a few years where I made my living as a night-club entertainer. Now this arena is sure to bring out the seedy side of anyone’s character. Going to work five nights a week in such an establishment causes a gradual, but sure decay of one’s moral fiber.
As I grew in age and wisdom I realized the affect that others were having on me. Upon this realization, I purposely began to associate with people that I wanted to be like. The people I respected became models for my behavior. Their morality and values became the issue. I soon realized that these people usually had something in common. They were Christians.
I did not become a Christian because I liked hanging out with other Christians, but their positive fellowship was a strong influence in bringing me to a saving knowledge of Christ.
————
I will close my column with a favorite memory from my childhood.
My brother and I both had polio. We regularly had to go for hydro-therapy at a pool across town. Neither of us were very strong, so our play with the normal kids seemed rather restricted. It was at these pool sessions that we played with lots of other polio kids. These were good times because we fit right in. I cherish those memories.
Maybe that’s part of why I enjoy going to our Polio Outreach meetings.
“Good Medicine”
by Elinor Young
This Christmas brought to my mind some “good medicine” times of other Decembers, like my first Christmas in Irian Jaya, Indonesia. —————-
My psyche refuses to acknowledge that it is Christmas. The suffocatingly hot day has cooled somewhat at sunset, but the unmistakable odor on the wind is sweaty bodies, not snow. The sound assaulting my ears is not jingling bells but the swell of a language I don’t understand yet. The pageant begins and the angels dance onto the stage.
Ahh, something familiar. Using Balinesian ballet movements. Nice. To the tune of “My Grandfather’s Clock.” Say what?
Two years later, my third Christmas in Irian Jaya, I am with missionary friends at Mapnduma, mountain home of the Nduga tribe. A small diesel generator lights two bare 40-watt bulbs hanging from the rafters of the shed-like church. The mountain night air is chilly, but the Ndugas are comfy, squatting on their hunkers skin-to-skin on the grass-covered dirt floor. The prevailing aroma is again sweaty bodies. The pageant begins. Gabriel comes in the back door and walks through the crowd towards Mary. He goes by too fast in the dim light. What is it that is different about him? (Besides the thick-soled dirty bare feet.) He is leaving, climbing out a window. Joseph takes Mary’s place at the front. Good. Gabriel will come back. Yes, here he comes. He is wearing a halo around his head and through the hole in his nose. Through what?!
————–
The laughter wasn’t good medicine until I laughed at myself, not at the “quaint” ways of people different from me. Why not “My Grandfather’s Clock” and who says angels have halos at all? The joke was on me, learning not to take myself or the-(American)-way-to-do-it too seriously.
At Mapnduma we invented the MTS (Mountain Transport System) so that I could go on a picnic a couple of rivers away. Braced poles with an attached flattened net-bag for me to sit on and be carried, it was the Ndugas’ chance to learn that there is more than one way to scale a mountain. We laughed together.
Laughter — prince of barrier breakers and stress relievers. It helps me confront not being “normal” and invent a new way. It’s Vitamin L, the cope enabler. Keeps my spirit whole and my bones juiced. And it comes with a life-time, no-cost guarantee from its Maker. Beat that, Q-10! (Ask Ray Honn what Q-10 is.)
P.E.N. & ink Link
Do you have a question, a need, an answer or a gadget? Phone Elinor (509) 238-4812 or write P& I Link, N. 24104 Jim Hill Rd., Chattaroy, WA 99003
Have you found a way to get your scooter or wheelchair through locked fences at athletic fields? I want to see my son play baseball! Call Sharman, 838-1689.
Do you have a hydro-seat? It attaches to a bathtub faucet and fills with water. You sit on it, then pull a plug to let the water out, sinking you into your bath. When you are ready to get out, turn on the faucet again, and up you go. (It’s free) Call Elinor 238-4812.
Do you have some tips for swallowing problems?
Are you interested in a shoe exchange (different sized feet)?
New in the Library
“Mature Matters” presents: Spokane’s Guide to Healthy Aging. A resource for growing older: services, products, tips, experiences. Like your own copy? It is available from local bookstores or by calling 624- 0798. $9.95.
Audio Cassettes
- Progressive Relaxation Exercises (Pain Management)
- Introduction to Pain Self-Management (side A)
- Your Pain Problem From a New Perspective (side B)
- Improving & Maintaining Physical Capabilities (side A)
- Relating to Other People When You Are In Pain (side B)
- Coping With Episodes of Intense Pain Thru Prevention (side A)
- Coping . . . Through Constructive Coping (side B)
- Using Relaxation to Cope With Pain (side A)
- Coping With Frustration and Discouragement (side B)
- Chronic Pain and Hypnosis, C. Frank, Ph.D.
Handouts By Mail
- Worsening Respiratory Effects For Post-Polio Survivors
- Depression and Chronic Pain
- Chronic Pain And The Family
- The Pain Packet: 5 pages of pain treatment strategies.
Previously listed handouts are still available.
Help Wanted
Folks, I am no longer able to keep up with all the librarian duties. So here are some volunteer opportunities.
HISTORIAN: collect clippings and photos, maintain the scrapbook.
MEDIA LIAISON: send out meeting notices to TV/Radio monthly.
ASST. LIBRARIAN (2): help me organize and record; prepare and set out library items at meetings. Many months in ’95 you will need to keep and transport the library.
VIDEO TAPE MEETINGS: as needed.
The March of Dimes will be celebrating their 40th anniversary in April. The organization is collecting remembrances of their early days from the polio survivors that they served. If you have memories that you would like to share call 1-800-453-3816. Do it soon as the deadline is fast approaching. If they choose your story they will want to tape it and will ask for any old photos that you may have. I will be happy to take your today picture at the January 24th meeting.
FOR WOMEN ONLY!
Ladies, even though these are personal topics, your answers are necessary in identifying women’s problems with Post Polio syndrome.
- Do you have bladder pain symptoms that a doctor has told you is NOT a bladder infection?
- Do you have genital pain?
Call or write me with your short responses. My answering machine is on all the time. If you need information on either of these topics now, I have packets to send to you. Our library now has “PPS FOR WOMEN ONLY” with information on the above topics.
Call Linda Scott (509) 328-9044
Please Make a Note of It
The next meeting for Polio Outreach will be Tuesday January 24th at the Shriners Hospital at 6:30 PM. Those wishing to eat prior to the meeting please arrive before 5:15 and be served by 5:25 as personnel begin closing at 5:30. Fellowship in the auditorium begins at 6:00. Enter the free parking garage on 5th Avenue. The auditorium is on the 5th floor, cafeteria on the 4th floor.
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 926-5192.
P.E.N. & ink,
mailing to over 300 individuals in the greater Spokane area, to provide experience based advice and emotional support for Polio survivors. Mailing address. . .
508 Shoreline Dr.
Liberty Lake, WA 99019