In this Issue:
Letters and much more…
FROM THE EDITOR
Hi Fellow PPS Manager,
It finally feels like spring. The days are getting longer, the grass is green, the wild flowers are starting to blossom; life renewed.
It’s been a long, wet, cold winter, and that can be difficult for people with PPS. Many of us experience increased pain, fatigue, and breathing difficulty. Some didn’t make it through the winter.
Two of those who moved on are highlighted on this page. Although each of us is special in our own way, these two made significant contributions to the world around them.
In February, two very interesting members of the PPS hierarchy visited Southern California: Dr. Marny Eulberg from Colorado, and Dr. Carol Vandenakker of UC Davis.
On page two, Gladys Swensrud reports on Dr. Vandenakker’s presentation to the PSP group of Orange County. This is a very good outline of the basics of PPS. It’s a real keeper. If you’re interested, video will be available soon. I’ll let you know.
Dr. Eulberg is a Polio Health International board member, and will be the subject of a future article.
Have fun .... Rick
Mary Clare Schlesinger passed away in her home on January 8, 2008 following a long battle with breathing problems.
A long time leader and activist in the PPS community, Mary Clare was well known throughout Southern California for her effort to bring PPS information and support to her peers.
She will be missed by all.
For a complete story, check out the San Diego Union-Tribune 1/21/08 article.
Long time member of the Hemet PPS group Harold Burks died February 2, 2008 during heart surgery.
Clinical psychologist, trained in the field of psychoanalysis, Hal was known world-wide for creating The Burks Behavior Rating Scales, a psychological measuring device that has been used to analyze the emotional and learning problems of over twenty million students from kindergarten through high school.
Dr. Burks wrote six books, his most recent: “101 Character Profiles”, a helpful guide to character development for fiction writers is available from AuthorHouse.com and other booksellers.
He is survived by his wife, Ann, children, and grandchildren.
All eyes in the Polio Survivor Plus audience, who gathered on February 20, 2008, to hear Dr. Carol Vandenakker speak, remained fixed and focused on every word throughout her presentation. Dr. Vandenakker impressed us not only with her depth of knowledge, but also with her kind, compassionate approach to post-polio care. As she spoke, we found ourselves wishing physicians and other health care professionals from around the nation could also be with us to hear her insightful explanations of the symptoms with which we live and suggestions of how we could learn to juggle them more effectively on a daily basis. Her in-depth answers were reflective of the many years she has spent working with survivors of polio.
Dr. Vandenakker, who moved to CA six years ago, began by giving us a brief, thorough history of polio. In her well-organized, comprehensive PowerPoint presentation, she recalled that paralytic polio was a major cause of morbidity and death throughout the world during the first half of the 20th Century.
She explained that introduction of the Salk vaccine in 1955, and the Sabin vaccine in 1961, dramatically decreased the numbers of people contracting polio. However, as hard as world organizations, like Rotary International, have worked to eradicate polio worldwide, polio is still a problem in parts of the Middle East and Africa. (Let us remember that until the world is declared free of the polio, the well-known pandemic past of the virus is still just a plane ride away.)
For most people, polio is a benign virus. Infected individuals experience fever, headache, malaise and gastrointestinal symptoms. For a select few, the symptoms increase in severity. According to the statistics that Dr. Vandenakker compiled, less than 5% of those who contracted polio have central nervous system (CNS) invasion, this group exhibits no apparent clinical paralysis. That potentially increases the risk of this population for later developing PPS. An unlucky 1% to 2% of survivors experience varying degrees of clinical paralysis.
Dr. Vandenakker had a wonderful slide, which diagrammed how the poliovirus attacks motor neurons and other areas of the central nervous system. While some neurons recover, others are damaged or die. The virus is eventually cleared by the immune system and then reinnervation of muscle occurs primarily through terminal axon sprouting.
She then moved into the natural history of PPS, explaining how acute polio is followed by a period of recovery and then a period of greater than 15 years of stability, which for approximately 50% of all survivors lasts indefinitely. In time, some 20% to 50% of all polio survivors eventually develop new weakness and symptoms of PPS.
Dr. Vandenakker chronicled that worldwide, there are 20,000,000 polio survivors, with 1,000,000 in the U.S., according to a 1996 survey. Some 450,000 polio survivors were left with residual paralysis, and 120,000 to 180,000 now experience PPS.
Dr. Vandenakker addressed the immunological mechanisms involved with PPS. She said that autopsies provide evidence of spinal cord inflammation in some polio survivors. In addition, there is evidence of an increase in inflammatory cytokines similar to people with multiple sclerosis reported in the cerebrospinal fluid of those experiencing PPS. It is suspected that viral RNA particles may remain in some PPS patients, possibly inducing cytokine production. At this point, Dr, Vandenakker stressed that the virus IS NOT still alive in our systems.
What causes general fatigue in people experiencing PPS is still a mystery. Fatigue could be due to injury to a portion of the brain. Another idea that is possible is that fatigue is related to cytokines in cerebrospinal fluid. But other thoughts include that chronic pain, depression or that sleep disturbance and respiratory problems may contribute to increasing fatigue.
Dr. Vandenakker suggested that when diagnosed with PPS, in our first visit with our Primary Care Physician, we should:
She noted that it's not wise to walk into any new doctor's office with a shopping list or stack of forms to be filled out. Let your health care providers get to know you first. She explained that the primary doctor's role is to provide primary care; evaluate general medical conditions; diagnose and treat the whole body; and manage overall health. Referrals to specialists like neurologists, orthotists and pulmonary care physicians are also common practice.
The topics of weakness, fatigue and pain were addressed in full along with the prospective treatments of each problem area. The overwhelming solution themes are to: keep weight down; add forms of exercise where appropriate to prevent muscle disuse; use assistive devices (where advantageous); correctly address sleep issues; incorporate energy conservation/pacing into activities of daily living (ADLs); and LIMIT MUSCLE OVERUSE.
Dr. Vandenakker briefly discussed medications. She noted that we should:
Audience question responses revealed that: The heart muscle is different than skeletal muscle so the heart is not affected by polio.
Bone loss might be greater in polio-affected limbs. The traditional bone-building medications may not make a difference. When doing a bone density test, it might be advisable to x-ray (as example) a bone in the wrist the next time around instead of a polio-affected limb.
Dr. Vandenakker concluded by mentioning that the next PHI Conference will be held in Warm Springs, Georgia in 2009. That location makes an appropriate full circle from the initial hope for the eradication of polio to hope for those with Post-Polio Syndrome.
January 12, 2008 Meeting
If you missed our January meeting, you certainly missed a terrific gathering. There were twenty-two in attendance and the two hour discussion was lively and entertaining throughout.
It is evident that our group bonds closer and closer each time we assemble. Attending support group meetings on a regular basis encourages strong friendships by the sharing of our unique polio experiences. Polio brought us together, but it is the warm feeling of camaraderie that cements our closeness.
Our San Diego group facilitator, Rick Kneeshaw, works hard throughout the year to bring pertinent topics, applicable to each of us, to the table for discussion, and this month’s theme was no exception. Rick opened our meeting with member introductions and then quickly bowed to our favorite in-house, guest moderator, Steve Goldman. Each January, Steve leads us in a roundtable discussion titled, “What Works for You” where we discuss items or ways of doing everyday tasks, which make life easier.
The following were suggestions made by our members:
A hook at the end of a common dowel can work wonders for snagging odds and ends just barely out of finger reach, such as to pull a sock or shoe closer. Steve keeps one close at hand by his bedside.
He also displayed cotton tubular stocknet, which he purchases by the box and he uses daily to cover his leg before putting his brace on. The tubing is washable, so when the skin sweats, the sweat is absorbed by the cotton tubing, which keeps his brace clean where it would otherwise contact the skin. It also serves to keep his leg warmer, which is a double advantage since his paralyzed leg is always cold.
Next he displayed an inverter, which he uses to plug into the lighter of his car to recharge the battery on his scooter between uses when he is on the go. Rick said the inverter can be found almost anywhere. When asked what the wattage was, he said they range from low to very high watts, but his sample was a 150 watt inverter, which he bought at Costco, but he said Home Depot and lots of other area stores sell them.
Lastly Rick displayed a metal grab bar, and he made a suggestion to mounting them in the vertical or diagonal placement on walls, potentially allowing better grasping power to pull yourself from a sitting position. He cautioned to be sure to have the bar installed correctly in studs to give it secure holding power.
He also explained the virtues of a lightweight garden stool, which he found at Walmart on line for approximately $20. It is a seat, which has handles to allow you to work in the garden or house without having to kneel on the ground. It also has handy hand holds to make rising easier. Don said he has three, which he uses in the yard and around the house.
Kathy Jo –
Another option is a microwave with a drop down door by Kitchenaide. The controls are also placed at the top of the unit for easy accessibility when placed under a counter.
We were reminded of other well known conveniences like installing a handicapped toilet or adding a toilet extension. That is one thing everyone can easily do to make life just a little bit easier.
Mike B. very generously shared copies of a CD with each of us on the history of Sister Kenny and her method of relieving polio pain. Thanks, Mike, for giving of your time and for going out of your way to enlighten us about the history of polio!
Gladys spoke briefly about her participation in Kingfisher Healthcare’s clinical trials for their KFH energy device. She explained how she felt the device had been of benefit to her and explained her unique approach to a more objective evaluation of the unit. Kingfisher Healthcare is expecting FDA approval for their equipment shortly, but in the meantime they are offering the post-polio community an opportunity to use this device and report back to Kingfisher on their personal findings. Flyers were available to explain the program and a number to call Roy Whitaker for questions: (877) 252-4374 ext 708. You many also email him at: firstname.lastname@example.org.
Rick took a few moments to recognize the passing of Mary Clare Schlesinger, who was an advocate for polio survivors everywhere. Mary Clare was best known for her unwavering commitment to inform as many people as possible worldwide about polio and the aftereffects, better know as Post-Polio Syndrome. She was instrumental in coordinating several symposiums, which were held at San Diego’s world-renowned Salk Institute.
The March 8 speaker for our group will be a representative from the San Diego County of Emergency Preparedness. The focus will be on how the disabled should respond in an emergency situation.
___The next San Diego meeting:___
At our January meeting we enjoyed guest speakers from Progressive Medical; Melanie Arledge and Dane Holderman.
The San Diego PPS group wrote a glowing testament on the Progressive Medical presentation from Melanie and Dane for the January PPS Manager. I urge you to read that report as we enjoyed the same professionalism and high level of information from the presentation we received two months later. If you feel your group could be helped by this information call 800-491-2292 today and schedule a presentation.
Our February meeting was planned and we were all looking forward to a meet and greet with Rick Van Der Linden. Rick would speak on breathing and general management of PPS and an added bonus he would bring his guitar!
Plan and hope as you will and then ‘life happens’ anyway. Bob Braddy sent out post cards and E-mailed members on line too, so far so good. Well, Joe Camaya and Kay are still in Arizona, Barbara Hall received an urgent plea from a neighbor needing transportation to an important doctors appointment the same day and time of the meeting. Then Kathy Braddy had her own medical emergency and Bob had to get her to see a special doctor and of course the only day and time available would be the same as our meeting day and time!
I thought that I should send out an e-mail to some of the regularly attending members, so they would not worry when four of us were absent at the same time. My object was to dispel any thoughts that perhaps we had carpooled and been in an accident. No, just life happening and you do the best you can.
Rick made the meeting and only two of our group had shown up? I lost the E-mail that had the names in it, sorry. Rick said, “It was a good visit, sharing and learning from each other and he invites us to join him at the Hemet meeting.” The Hemet meeting is the third Tuesday of each month 11 AM – 1 PM. Call Rick 951-926-5492 or Bunny 951-766-7118
Our March meeting will be a presentation from Bob and Kathy Braddy about travel and/or a discussion of “How Hard it is to ASK FOR HELP?” Please plan to attend and bring a friend!
Many Thanks to Bob for his continuing work on our members list. Taking nearly 100 names from 3-lists down to one list and keeping up with deletions and changes looks like a full time job. If you have changes or are not receiving meeting notices contact Bob Braddy 760-322-1468 or email@example.com
Looking forward to seeing all of you March 7th.
_____The next meetings:_____
Reported by Rick Van Der Linden
As many of you know by now, we lost Mary Clare.
Some members remembered Mary Clare as someone they could turn to in times of need.
It was an open discussion meeting with topics such as: new member information, where to find information online, water exercise (Watsu), the benefits of vitamin D, and personal challenges.
Members were invited to tell their personal polio history, though some found it difficult to talk about.
Dr. Eulberg talked a little bit about Polio Health International (visit www.post-polio.org) and announced the upcoming PHI 10th Annual PPS Conference which will be held in Warm Springs Georgia in April 2009.
Note from Rick V: I encourage everyone within driving distance of the Escondido meeting to get involved - attend the meetings, give Marilyn a hand.
______The next meeting:______
I’d like to start this report by thanking Sun West for the great meeting place. They provide a quiet, comfortable, air-conditioned room at a nominal fee, and two pots of coffee for only five dollars.
I’d also like to thank Bunny Smith and Betty Cameron for leading the February meeting in my absence. Bunny tells me it was a very active meeting. Sorry I missed it, but not sorry you guys missed out on the cold virus that kept me a way.
Have fun … Rick
Eleven of us met on February 16th, including newcomer Stephen O’Connell, who has been reading up on post-polio syndrome. We enjoyed our guest speaker, Terri Howell, Outreach Specialist with California Telephone Access Program (CTAP)
Terri’s background included working with Patti Strong (whose articles for the Rancho newsletter we enjoyed for many years). She said, “Patti was a good example of go-getter.” (Have you wondered what happened to Patti? She moved to Texas.)
Terri doesn’t have PPS, but can relate to similar problems with fibromyalgia and chronic fatigue. You get tired after a while, but must keep going. You have to go slower, or if you make mistakes you have to go over it again.
CTAP has been in California 30 years. Terri discussed (a) Background of CTAP; (b) Who qualifies for a free phone; (c) Various phones and features available. Laws were passed in 1978 because some people couldn’t hear. The TTY phone (has typewriter keyboard) communicated only to another TTY phone. Then they set up relay service: you call 711 and the operator takes your call, types the message for the other person. No charge.
Three criteria to qualify – must be California resident; have a phone line where you live; one of five difficulties in using standard phone. These are: vision, hearing, mobility. Economic status and age are not considered.
3 categories of disability / impairments: hearing, mobility, vision.
I couldn’t keep track of each phone, but features included: Four times louder than normal phone, large numbers that light up, speed-dial, loudness of ring. You can have “silent call” box to wear, vibrates. Or a device makes lamp light up when phone rings. Coming soon will be a voice-activated dialer.
RC200 no hand set. 20-person speed dial… this one such a blessing. If all you can do is breathe, you can puff into the device and it will activate the phone.. Comes with training. Many CP kids use this phone, or the speech-to-speech program using 711.
Discussion on Pleurisy
Getting Referral to Rancho
Miscellaneous Discussion Items
Perspective: Using electric chair, cane, handicap placard in car – it’s hard to accept. But we have to conserve to preserve – be proactive in managing the muscles we have. It’s not what other people think about us, because their perception is not our reality.
Terri thought of a Simpson’s episode - He saw a lady being fed thru a drip, and exclaimed: “That’s no fair – I have to chew my food!” (We all had a laugh.)
Driving problems – Some have trouble putting right foot to the break. Sue found that applying pressure to the knee helps. Hand controls – Active Mobility (off Columbia now). Pauline said hand break is $250-$300. Cruise control is a big help for long tips.
Leapfrog. I’ve been playing leapfrog for a year. When I run into a problem (like when the stray cat attacked my leg and I had to go to emergency), instead of worrying and regretting, I skip over that and go right to the happy stage. It really makes a difference. I just say, “Lord, I thank you for this experience!” Why waste time feeling badly?
____The next Riverside PPSG meeting:____
Riverside PPSG Meetings: third Saturday of even # months at 10 AM.
For information contact Marsha Hart at firstname.lastname@example.org
At the last minute, we received the sad news that the Victorville group lost long time member Nancy Snively.
We’ll follow up in the next issue.
Attention all readers. Your help is needed. Polio Survivors Plus (PSP) is partnering again this year to bring all community-minded people who can make the time and who have lower extremity weakness due to disability to be live participants in the lab portion of future orthotists and prosthetists who are pursuing their credentials from Northwestern University.
This effort is also to be the final PSP program of a three-part series. "Be Prepared - Brace Yourself" will feature California State University - Dominguez Hills Lab Instructor Glenn Ham-Rosebrock, who is a polio survivor. His presentation will take place on Wednesday, March 26, 2008 at 1:30-3:30p in Laguna Woods Village (LWV) Clubhouse 3 at 23822 Avenida Sevilla in Laguna Woods, CA. The nearest cross streets are Calle Aragon and Moulton Parkway between the 73 and 5 Freeways.
Everyone who signs up and who participates in one or both orthotist student sessions which will have two meeting times. Each will receive some compensation for their time and have the opportunity to learn about alternative bracing to protect limbs that need to have strength conserved to be preserved. The scheduled dates for each of two sessions are:
-- April 29th, Tuesday, at 9:30 am to 1 pm and on May 1st, Thursday, from 1-5 pm for AFOs (ankle-foot orthotics) and/or
-- May 28th, Wednesday from 9 am -1 pm and on June 3, Thursday from 12:30 - 4:30 pm.
All sessions will be held at OSSUR North America, located at 27402 Aliso Viejo Parkway in Aliso Viejo, CA. For further information and to sign up for this program, contact Sue Lau.
Polio Survivors Plus initially kicked off the new year with the first in the three-part series of programs which brought in five featured guests who informed meeting attendees that it's important to "Be Prepared - Special Needs Disaster Planning." With tabletop exhibits, hand out "Vials For Life," presentations featured hot off the press workbooks and power point presentations.
The city where you are located when a disaster occurs is immediately in charge. Everyone should check with the city where they live and/or work to learn what protocol has been tailored to meet local needs.
Chris Macon, assistant Emergency Services coordinator for the City of Laguna Woods focused on a national program called CERT, (Community Emergency Response Team) and how the efforts of neighborhoods (like the role that the Laguna Woods Village Disaster Preparedness Task Force Committee) work with regional services (like that of the American Red Cross which does not become involved in disaster assistance until 72 hours after an incident occurs and only if invited in by the City.
The American Red Cross's Heidi Rosofky, who has multiple sclerosis, urged the importance of packing enough medications for one week and rotating that supply so that nothing is past their expiration date.
PSP's February 20th program, "Be Prepared - PPS Now and Into the Future," featured physiatrist Carol Vandenakker, MD, director of the Post-Polio Clinic at UC - Davis Medical Center. [Read Gladys Swensrud’s account of the meeting in this issue of the PPS Mananger.]
Gladys Swensrud attended this program along with members of various PPSGs of Southern California and New Mexico. Polio Survivors Plus is happy to make available to a videotape of this most informative presentation to help all polio survivors to "Be Prepared."
[re: The PPS Manager 1/08 issue]
It was pretty scary. I was using my BiPap 24/7 for a few weeks. Now in PT to try to regain some endurance and get some reconditioning back after almost 2 months in bed. I suspect the muscles had been weakening for quite sometime … over many months and this crept up on me.
19/14 sounds like you’re almost in CPAP territory. Most PPS docs in the know recommend a difference of 8 to 10 between IPAP and EPAP. More like 19/9? Do you have COPD or emphysema?
Thank you for reading the PPS Manager Newsletter. And, thanks for your help and your words of encouragement.
Special thanks to Sandy Van Der Linden for stapling and attaching the labels. Ann Howell for your graphics expertise.
Thanks to Donald & Carol Baisch, Charles & Dee Krause, Evelyn & Jay Shaw, Phil & Kathy Black, Bettie L. Smith, and Michael & Nancy Rettig. Your contributions keep this thing alive.
To offer financial help, submit ideas, writings, or commentary, e-mail Rick at: PPSman@roadrunner.com
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