The President’s Message…
March 2009
We had one of our best presentations yet when Dr. Madeline Chatlain (shat’ lane), occupational therapist, spoke to us on February 28. She read numerous books on post-polio syndrome and even called Dr. Richard Bruno, author of The Polio Paradox. We have very few health professionals who research our problems and show the interest in us that she did. Thanks to Sally Luck for recommending her. Thanks to Ed Luck and Michael Dunnermann who assisted her in bringing in her materials and equipment. Kudos to Delores McIntyre for being a subject while Dr. Chatlain explained techniques for getting in and out of bed and resting more comfortably through the night. We were so pleased when our speaker went to lunch with several of us. We learned even more while talking informally. If you missed the meeting, we will share information about ordering some products which she showed. Some of us plan to see Dr. Chatlain for consultation.
My friend Pam from Columbus always shares interesting things. She related that the great author Ernest Hemingway once was challenged to write a story in only six words. He wrote “For sale: baby shoes, never worn.” SMITH Magazine, started in 2006, asked readers to submit their six-word stories. Some have been poignant, as Hemingway’s was, and others humorous. What if we polio survivors decided to offer our memoirs in six words? I composed a few. “Mom twice taught me to walk. Got lemons; made lemonade; moved forward. Big challenges; many dreams; major adjustments. Big Mama; Big Sister; Big Support. Warm Springs; many trips; comforting memories. Survivors by fate, friends by choice.” Perhaps all of us could compose six-word memoirs during an SOS group at an upcoming meeting. These can be typed and placed in our memory book. Remember that one of our goals is to write as many of our stories as we can in the coming years. Please take time to write a few six-words stories about your polio experience. Your story is too important to be forgotten.
Cheryl Brackin
CEPSA’s next regular meeting is on Saturday, March 28th, at 10:30 a.m. in the
Candler Hospital Heart & Lung Building, second floor, conference room.
Monthly Meeting Minutes
February 28, 2009
The February monthly meeting of CEPSA was called to order by Cheryl Brackin, President, on Saturday, February 28 at 10:45 AM.
Cheryl welcomed all the visitors and greeted our guest speaker, Dr. Madeline Chatlain.
Lorraine Frew led us in the pledge of allegiance to the flag.
Cheryl then introduced Dr. Chatlain. Dr. Chatlain’s subject was “Occupational Therapy for the PPS Patient, A Common Sense Approach.” It was very informative. She emphasized myofascial trigger point therapy to curb pain, which she uses to great success.
She also discussed the part our posture plays in our pain management. We thank her for the informative handouts and the material she gave us and she made us aware that we could make an appointment to see her.
Adrienne Stallworth moved that we accept the January meeting minutes as printed in the newsletter with the spelling corrections of names. Sec. Janet DiClaudio. Approved.
Marty Foxx presented the Treasurer’s report. Richard Graham moved that we accept the report. Sec. Lorraine Frew. Approved.
The Care Team/Committee Reports followed. Betty Goff thanked the membership for the scooter. She has used it, and finds it helpful. Remember the following during these days: Dana Remick, The Fricks, Velma Underwood, Tammy Hewitt, Shirley Johns, Danny Jenkins, Dan Shehan, and the Jarvis family.
Old business: Please let Adrienne or your care team leader know if there are changes to your name or information in the directory.
Several of our members (Sandra Bath, Marty Foxx, Harvey Varnadoe, and Dan Shehan) will be attending the Post Polio Health Conference at Warm Springs in April. Their report will be the program for the May meeting.
Sandra Bath mentioned that the Rotarian magazine had an excellent article on polio, and that we should get a copy.
Announcements: There will be an Open House at the new LIFE building March 11 from 11 to 1. They will serve lunch. Cheryl encouraged us to attend.
Meeting adjourned at 12:50 PM.
Respectfully submitted,
Adrienne Stallworth
Secretary
The speaker for our March Meeting will be Mr. Jim Durritt. Mr. Durritt holds a Bachelor of Arts Degree from University of Wisconsin. He has spent over thirty years in the health care industry. He worked in the pharmaceutical industry,orthopaedic/hospital sales, and eleven years in the durable medical industry. He is currently with Fuller Rehabilitation.
One of our members brought to my attention that in listing the month’s birthdays the newsletter was received after the members birthday had passed. In order to correct this I will list the present month and the following month in each issue as space allows.
Happy Birthday …
March:
Barry Turner – 2
Thelma Tillotson – 4
Tony Tedona – 5
Lavonne Calandra – 7
Glenda Walker – 14
Terri Dunnermann – 18
Roy Tillotson – 24
April:
Fred Davis – 2
Tom Newcomer – 2
Sissy Morel – 6
Marty Foxx – 8
QUOTE of the MONTH
“The secret of genius is to carry the spirit of the child into old age, which means never losing your enthusiasm.” – Victor Hugo
Member Concerns
Please remember in your prayers.
Shirley Johns Cheryl Brackin
Gene Jarvis Danny Jenkins
Ruth Parham Beverly Polin
We have started a “lunch/brunch” after our regular meeting. After the February meeting 14 members went out to lunch. It gives us lots more time to see and enjoy each others company. Cheryl will ask at the start of the meeting who would like to attend. We will notify the restaurant and will be seated in a separate room.
Are you planning to attend? ……
The Tenth International Conference of Post-Polio Health International will be held in Warm Springs, Georgia, April 23-25, 2009. The registration fee is $120.00 before March 21, and $135.00 after March 21. If you are interested in attending, CEPSA will pay that fee for you.
Call Marty Foxx [912-353-8808] for more information. Online registration may be made at www.post-polio.org or www.rooseveltrehab.org.
Bihar, India
Bihar recorded 233 new polio cases in 2008, one of the highest since the polio immunisation drive was launched in the state nearly a decade ago, an official had said.
Bihar recorded 61 polio cases in 2006 and 193 cases in 2007.
Some thoughts regarding Post-Polio Syndrome from the National Institute of Neurological Disorders.
What causes PPS?
The cause is unknown. However, the new weakness of PPS appears to be related to the degeneration of individual nerve terminals in the motor units that remain after the initial illness. A motor unit is a nerve cell (or neuron) and the muscle fibers it activates. The poliovirus attacks specific neurons in the brainstem and the anterior horn cells of the spinal cord. In an effort to compensate for the loss of these neurons, ones that survive sprout new nerve terminals to the orphaned muscle fibers. The result is some recovery of movement and enlarged motor units.
Years of high use of these enlarged motor units adds stress to the neuronal cell body, which then may not be able to maintain the metabolic demands of all the new sprouts, resulting in the slow deterioration of motor units. Restoration of nerve function may occur in some fibers a second time, but eventually nerve terminals malfunction and permanent weakness occurs. This hypothesis is consistent with PPS’s slow, stepwise, unpredictable course.
Through years of studies, scientists at the National Institute of Neurological Disorders and Stroke and at other institutions have shown that the weakness of PPS is a very slowly progressing condition marked by periods of stability followed by new declines in the ability to carry out usual daily activities.
How is PPS diagnosed?
Physicians arrive at a diagnosis of PPS by completing a comprehensive medical history and neuromuscular examination and by excluding other disorders that could explain the symptoms. Researchers and physicians typically use the following criteria to establish a diagnosis:
Criteria for diagnosis of post-polio syndrome.
· Prior paralytic poliomyelitis with evidence of motor neuron loss, as confirmed by history of the acute paralytic illness, signs of residual weakness and atrophy of muscles on neuromuscular examination, and signs of nerve damage on electromyography (EMG). Rarely, persons have subclinical paralytic polio, described as a loss of motor neurons during acute polio but with no obvious deficit. That prior polio now needs to be confirmed with an EMG. Also, a reported history of nonparalytic polio may be inaccurate. · A period of paralytic poliomyelitis, followed by an interval (usually 15 years or more) of stable neuromuscular function.
· Gradual onset of progressive and persistent new muscle weakness or abnormal muscle fatigability (decreased endurance), with or without generalized fatigue, muscle atrophy, or muscle and joint pain. Onset may at times follow trauma, surgery, or a period of inactivity, and can appear to be sudden. Less commonly, symptoms attributed to PPS include new problems with breathing or swallowing.
· Symptoms that persist for at least a year.
· Exclusion of other neuromuscular, medical, and orthopedic problems as causes of symptoms.
PPS may be difficult to diagnose in some people because other medical conditions can complicate the evaluation. Depression, for example, also is associated with fatigue and can be misinterpreted as PPS or vice versa. For this reason, some clinicians use less restrictive diagnostic criteria, while others prefer to categorize new problems as the late effects of polio—for example, shoulder osteoarthritis from walking with crutches, a chronic rotator cuff tear leading to pain and disuse weakness, or breathing insufficiency due to progressive scoliosis.
Polio survivors with PPS symptoms need to visit a physician trained in neuromuscular disorders to clearly establish potential causes for declining strength and to assess progression of weakness not explained by other health problems.
Physicians may use magnetic resonance imaging (MRI), computed tomography (CT), neuroimaging, and electrophysiological studies as tools to investigate the course of decline in muscle strength. Less commonly, they will conduct a muscle biopsy or a spinal fluid analysis. These tests are also important to exclude other, possibly treatable, conditions that mimic PPS, but the tests do not identify survivors at greatest risk for new progression of muscle weakness.
It is important to remember that polio survivors may acquire other illnesses and should always have regular check-ups and preventive diagnostic tests, such as mammograms, pap smears, and colorectal exams.
How is PPS treated?
There are currently no effective pharmaceutical or specific treatments for the syndrome itself. However, a number of controlled studies have demonstrated that nonfatiguing exercises can improve muscle strength. Researchers at the National Institutes of Health (NIH) have tried treating PPS patients with alpha-2 recombinant interferon, but the treatment proved ineffective. Another study in which PPS patients received high doses of prednisone demonstrated a mild improvement in their condition, but the results were not statistically significant. This, in addition to the drug’s side effects, led researchers to recommend that prednisone not be used to treat PPS.
In an effort to reduce fatigue, increase strength, and improve quality of life in PPS patients, scientists conducted two controlled studies using low doses of the drug pyridostigmine (Mestinon). These studies showed that pyridostigmine is not helpful for PPS patients.
In another controlled study scientists concluded that the drug amantadine is not helpful in reducing fatigue. And other researchers recently evaluated the effectiveness of modifinil (Provigil) on reducing fatigue and found no benefit.
Preliminary studies indicate that intravenous immunoglobin may reduce pain, increase quality of life, and improve strength. Research into its use is ongoing.
The future of PPS treatment may center on nerve growth factors. Since PPS may result from the degeneration of nerve sprouts, growth factors can target these and help to regenerate new ones. Unfortunately, one small study that NINDS scientists participated in showed that insulin-like growth factor (IGF-1), which can enhance the ability of motor neurons to sprout new branches and maintain existing branches, was not helpful.
Although there is no cure, there are recommended management strategies. Seek medical advice from a physician experienced in treating neuromuscular disorders. Do not attribute all signs and symptoms to prior polio. Use judicious exercise, preferably under the supervision of an experienced professional. Use recommended mobility aids, ventilatory equipment, and revised activities of daily living. Avoid activities that cause pain or fatigue that lasts more than 10 minutes. Pace daily activities to avoid rapid muscle tiring and total body exhaustion.
Learning about PPS is important for polio survivors and their families. Management of PPS can involve lifestyle changes. Support groups that encourage self-help, group participation, and positive action can be helpful. For some, individual or family counseling may be needed to adjust to the late effects of poliomyelitis, because experiencing new symptoms and using assistive devices may bring back distressing memories of the original illness.
What is the role of exercise in the treatment of PPS?
The symptoms of pain, weakness, and fatigue can result from the overuse and misuse of muscles and joints. These same symptoms can also result from disuse of muscles and joints. This fact has caused a misunderstanding about whether to encourage or discourage exercise for polio survivors or individuals who already have PPS.
Exercise is safe and effective when carefully prescribed and monitored by experienced health professionals. Exercise is more likely to benefit those muscle groups that were least affected by polio. Cardiopulmonary endurance training is usually more effective than strengthening exercises. Heavy or intense resistive exercise and weight-lifting using polio-affected muscles may be counterproductive because they can further weaken rather than strengthen these muscles.
Exercise prescriptions should include
- the specific muscle groups to be included,
- the specific muscle groups to be excluded, and
- the type of exercise, together with frequency and duration.
Exercise should be reduced or discontinued if additional weakness, excessive fatigue, or unduly prolonged recovery time is noted by either the individual with PPS or the professional monitoring the exercise.
Can PPS be prevented?
Polio survivors often ask if there is a way to prevent PPS. Presently, no intervention has been found to stop the deterioration of surviving neurons. But physicians recommend that polio survivors get the proper amount of sleep, maintain a well-balanced diet, avoid unhealthy habits such as smoking and overeating, and follow an exercise program as discussed above. Proper lifestyle changes, the use of assistive devices, and taking certain anti-inflammatory medications may help some of the symptoms of PPS.
What research is being conducted?
Scientists are working on a variety of investigations that may one day help individuals with PPS. Some basic researchers are studying the behavior of motor neurons many years after a polio attack. Others are looking at the mechanisms of fatigue and are trying to discover the role played by the brain, spinal cord, peripheral nerves, the neuromuscular junction (the site where a nerve cell meets the muscle cell it helps activate), and the muscles.
Determining if there is an immunological link in PPS is also an area of intense interest. Researchers who discovered inflammation around motor neurons or muscles are trying to find out if this is due to an immunological response.
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:
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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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