The President’s Message…
February 2009
It was great to see so many of you at the January CEPSA meeting after our seven weeks away. We have heard positive feedback about our discussion groups on Pain, Mobility, and Tricks of the Trade. Thanks again to our group discussion leaders. Members have said they want more of these types of discussions, and we are planning another for the spring.
No doubt several of you watched “The American Experience: Polio Crusade” on public television on February 2. Some members, including me, found it to be an emotional event. It brought back our own memories of what we experienced. Some were angry that “the rest of the story” was not told—what is happening to the millions worldwide still dealing with the late effects of polio. I contacted Patrick Ramirez, Account Manager of History Programming for American Experience. According to Mr. Ramirez, “The Polio Crusade focuses on the history of this disease and its effect on an unprepared country.” He said their program “rarely touches on the contemporary.” I believe we are a continuing part of polio history. It is not over. Doctors were researching what appeared to be the late effects of polio in the early 1950’s, even before the vaccine was available. I read a reference to the work of Dr. Robert Bennett, one of my Warm Springs physicians, and another physician who were studying new symptoms, which very likely were the late effects of polio, in survivors. Some researchers and writers have suggested that President Roosevelt could have been experiencing post-polio syndrome in his later years.
Polio survivors do not seek attention, publicity, or pity. We simply want the world to know what happened to us. We want medical professionals to help us as we deal with our progressive problems. We want children everywhere immunized so that no child endures what we have. Therefore, CEPSA members and other survivors across the country and world must continue to tell our story. This group will do that through local television programs and newspaper articles, presentations to community groups such as Rotary, talks to physical therapy students, and community actions such as our map project for downtown access. We will continue to write and publish our individual stories to leave for future generations. Perhaps within another fifty years or more American Experience will give the world the second chapter of this history.
Cheryl Brackin
Monthly Meeting Minutes
January 24, 2009
Meeting was called to order by Cheryl Brackin, President.
Lorraine Frew led the Pledge of Allegiance. Marty Foxx gave a wonderful inspiration on “Just for Today.”
Cheryl welcomed our newcomers and visitors: Penny Smith, Idella White, Alfreda and Julian Stevens.
The minutes of the October meeting were approved with the correction of the spelling of Sally Luck’s name.
Announcements: LIFE has moved to the SPIVA Law building, and will be holding its Open House soon. Delores McIntye made several bags for walkers and has them for any and all. See her after the meeting for one.
Care Team Reports: Those mentioned were Tony Calendra, Barry Turner, George Frick, Ruth Parnham, Charlie Teeple, Danny Jenkins, Gloria Sullivan, Jane DiClaudio, Shirley Johns, Dan Sheehan, Tony Tedona, Diane Davis, Tom Newcomer, Harriett and Dale Merritt, Roy Tillotson, Archie Ivey, Hattie Evenson, Tom Schendorf, Harvey Varnedoe, as well as several others.
Jim Veccia announced that the Care Team leaders need to call their members between the first and tenth of the month, and report to him any needs that should go in the newsletter. Also the Care Team leaders need to call their members prior to the monthly meetings.
Adrienne Stallworth presented the draft of the new directory and asked that any changes be sent to her before the meeting in February, so she can prepare a final copy and distribute it then.
Marty Foxx presented the Treasurer’s report. Adrienne Stallworth made a motion that we accept the report as read. Betty Goff seconded the motion The report was approved unanimously.
We had three excellent discussion groups: Mobility—with Jim and Richard leading; Pain Management with Lorraine Frew and Betty Goff leading; and Tricks of the Trade with Marty Foxx and Terri Dunnermann leading.
Two door prizes were awarded, and the meeting was adjourned.
Respectfully Submitted,
Adrienne Stallworth
Secretary
Happy Birthday
Sharon Underwood – 4
Sandra Bath – 16
Charles Johnson – 22
Chet Kirby – 23
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Welcome New Members
Charles Teeple – Savannah
Ann Finley – Warner Robbins
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Attention Members
CEPSA has a library of about ten books. These books are for the members to borrow and read.
Somewhere along the way we have lost track of these books. If you have any books borrowed from CEPSA
or if you have been storing them, please return them at the next meeting.
Thank you!!!
Member Concerns
Please remember in your prayers.
Archie Ivey William Pierce
Richard Graham Diane Davis
Gloria Sullivan Dan Shehan
Shirley Johns Danny Jenkins
Gene Jarvis Harvey Vanadoe
Gigi Davis (Diane’s daughter-in-law)
QUOTE of the MONTH
“Our greatest glory is not in never failing,
but in rising up every time we fail.”
Ralph Waldo Emerson
Dr. Madeline Chatlain will be CEPSA’s
guest speaker for our February meeting.
Dr. Madeline Chatlain, is a native Ohian, who began her career in veterinary medicine, specializing in equine and small animal medicine. She retired to Hilton Head Island in 1991 where she diversified her career and interests into the field of pain and lymphedema therapies. Lucky to have found Dr. Janet Travel 1, MD, who some of you may remember was John F. Kennedy’s personal physician and the originator of the Myofascial Trigger Point Therapy protocol, Dr. Chatlain studied directly under Dr. Travell and became a board certified member of the American Academy of Pain Management. Additional studies led her to become the first nationally board certified lymphedema therapist in the state of South Carolina and also, at the ripe old age of 48 years old, to go back to school and obtain of Masters of Science in Occupational Therapy, Her topic will underscore practical considerations in alleviating common pain patterns specifically for the PPS patient.
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Not only a great man, but also a polio survivor.
The theme of our January meeting was ‘Adjustments.’ We formed three categories: Mobility, Pain Management and Tricks of the Trade. Two members hosted each group.
Mobility hosted by Richard and Jim
Most of our time was spent on exploring why members who do not have powerchairs or scooters, but would benefit greatly from them, have stayed away from getting one. With the input of members who are now using power to get around they said their biggest obstacle generally was their own ‘pride.’ All agreed taking that first step was difficult, but afterwards they couldn’t imagine why they didn’t do it sooner. Richard spoke about the basic difference between a scooter and a chair. Chairs were much better in the home or any confined space. The maneuverability they offer works best around rooms and hallways. While scooters seem to work better outside in public places such as a mall or sidewalks, they also are better on uneven terrain. Another difference is the powerchair has a toggle lever to direct it. This can be helpful with members that have hand problems. We mentioned that scooters were available that can be taken apart easily and placed in the back of cars if the member has someone who can do this for them. With powerchairs and large scooters a lift for the car is necessary. We spoke about using walkers with wheels rather then lifting them up with each step. Bracing came up briefly, but time usually ran out.
Pain Management hosted by Lorraine and Betty
“Members shared the following pain management treatments: listen to your body; get off your feet; take rest breaks; use massage, heat, acupuncture, exercise, pool therapy, and magnets to reduce pain, particularly in trigger points. See a chiropractor or physical therapist if beneficial. Keep regular medical appointments. Do not ignore pain; it is sending you a message. If you have new or intense pain, see your doctor. It could be due to something other than post-polio syndrome. Several over-the-counter medicines have helped some members, including Advil, Aleve, Ibuprofen, and Tylenol. Many concurred that aspirin gives little or no relief. Several prescription medications have been prescribed by physicians, including Soma, Flexeril, and Voltaren gel.”.
Tricks of the Trade hosted by Marty and Terri
The “Tricks of the Trade” discussion group at our January 24th meeting was led by Terri Dunnermann and Marty Foxx. Assistive devices for kitchen use included :
- Carol Chen scissors and battery-powered scissors by Singer
- Plastic and paper cutter with a “tooth” which can’t cut skin, magnetizes to the frig, and cost $5.50 at Kitchenware Outfitters
- Battery-powered one-handed pepper grinder and one that is mechanical for one hand operation
- Electric knives, hands-free battery-powered can openers and jar openers [Wal-greens or Bed, Bath, and Beyond]
- Special cutting board with vise grippers to hold food steady has suction feet
- Duracell batteries work best, especially in wine cork removers
- Nonskid patches cut from a rug pad make plates and cutting boards stay put
- Use sharp knives to avoid accidents
- Install foot pedals to turn water on and off
Other good ideas shared were electric staplers, pencil sharpeners, and letter openers. Lights may be turned on by touch with a device plugged into the socket or by a twist knob expander. Marty had pull chains installed on most of her lamps. A hands-free hair dryer stands on the vanity to dry hair or body, and electric tooth brushes help with oral hygiene. Lever door handles and rubber grippers help with opening doors. Rocker wall switches make turning on room lights much easier. Use motion sensor night lights.
Search on the Internet for your special needs and be amazed at what is available. Your own creativity may supply your need if you “think outside the box.” If you want more information on any of these ideas or have something useful to offer yourself, contact Terri or Marty. Everyday activities are hard enough for us; let’s reduce the energy required as much as we can so we’ll have some left over for fun!
The following article appeared in the Greater Boston Post-Polio Ass’n. newsletter. Mr. Bowers makes some extremely good and valuable points. Many of our members are facing these same problems. He stresses the value of not waiting.
Decisions
by Fredson Bowers, GBPPA Member
Four or five years ago, I bought a rolling walker for outside use after I discovered that pushing a supermarket shopping cart helped support my back. The walker allowed me to walk up to a mile with several stops to rest. Since then my walking has deteriorated so that I am down to about a quarter of a mile, and I have started to use a cane in the house.
The first major decision was whether or not I really needed an electric scooter and, if so, where I would use it. I thought that it would be helpful at parks and in malls and museums. Before deciding, I felt that I should be re-evaluated at the International Rehabilitation Center for Polio in Framingham, and made an appointment for the wheelchair clinic. My question to the physical therapist was, “If I can walk a quarter of a mile with a rolling walker, should I do so?” The answer was, “No, you need to conserve your strength.” I made the first major decision, to buy a scooter.
At the wheelchair clinic I tried out both a scooter and a power wheelchair. I was leaning towards a scooter, but the IRCP people really pushed for the power chair since it was more maneuverable and the toggle switch would be easier to use with my weakened arms. The advantages of a power chair (easier to operate, for example) over the scooter outweighed the disadvantages and I decided to order an Invacare M51. The next decision involved options for the chair. In addition to a cane holder and swing-away footrests, I chose the flat-free driving wheels where the pneumatic tires are replaced by tires filled with stiff foam inserts.
The next decision was the most expensive and involved the vehicle needed to transport the power chair. Our 1995 Oldsmobile sedan (with only 61,000 miles on it) was not suitable, and a minivan was needed. Options were a side ramp, rear ramp or an electric hoist. Van conversions are quite expensive, and because of the complete lack of muscles in my knees I could not transfer from inside the van to the driver’s seat. Since I had seen a Ford minivan with an electric hoist in Ogunquit, Maine two summers ago and liked the idea, I decided on a Bruno hoist. My wife, Barbara, and I then considered Honda and Toyota, and purchased a Toyota Sienna minivan because of Toyota’s excellent reputation, the proximity of the dealership and the fact that Toyota has a Mobility Program which reimburses up to $1,000 towards the purchase of a hoist.
The next problem involved our driveway which is very steep and our garage which is very narrow and also short. The Toyota is four inches wider than the Oldsmobile, and the side view mirrors are much larger. The Toyota salesperson backed the van into the garage with only three inches to spare on each side (she had been an ambulance driver for twelve years). The mirrors do fold, but I need them to back down the driveway. We decided to widen just the entrance by a foot, and to replace the eight foot door with a nine foot door.
Now we were thrown a curve ball by the wheelchair dealer who told us that the gel batteries could not be allowed to freeze. Our garage is unheated and we had to think about how to protect them. We considered several alternatives including an electric blanket as a heat source, and also removing the batteries to store in the cellar hooked up to an automobile battery charger. The contractor suggested a heater with fan mounted at the rear of the garage and hooked up to a thermostat, and this was decided upon.
Before drawing some lessons from all of this, I would like to digress a bit and mention that I was extremely active physically after my recovery from polio (I was paralyzed from the neck on down). Among other activities, I exerted enormous efforts in chopping roots and digging out a half dozen large shrubs, installing a tile ceiling and recessed lighting in the cellar, and also walking some six or seven miles in two days through Disney World. If I had known then what I know at present, I wouldn’t have engaged in the first two activities at all, and I would have rented an electric scooter for Disney World, because I feel that I am finally paying the price after all these years.
What are the three lessons I’d like to leave with you? First, just because you can do something doesn’t mean that you should always do it – you will probably pay the price eventually. Second, don’t put off making decisions which you know must be made. Make decisions early and voluntarily, and not when forced to do so by circumstances. You will usually make better choices that way. Finally, do some long range planning by looking ahead two or three years – this makes it easier to accept changes when they become necessary.
CONTRIBUTIONS The Coastal Empire Polio Survivors Association is a non-profit corporation which is tax exempt under IRS code 501c(3). We have no paid employees, only volunteers dedicated to helping all polio survivors.
Your financial support is appreciated at any level suggested below:
* CEPSA Member – $15.00 annual voluntary donation
* CEPSA Supporter – $25.00 $50.00 $100.00 $300.00
* CEPSA Memorial or Honor Gift – any amount
* CEPSA Sponsor – any amount
Your contributions are tax deductible and will be acknowledged appropriately.
Please complete this form and mail it along with your check to: CEPSA, Marty Foxx, 23 East 61st Street, Savannah, GA31405.
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