In the May 2008 Issue:
Letters and much more…
Meeting reports:
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FROM THE EDITOR
Hi Fellow PPS Manager,
For those of us who made it through another winter, congratulations. Two creative, active, beautiful polio survivors who are among those who didn’t make it are remembered in the Coachella and Victorville meeting reports.
It continues to amaze me how so many of us excel in life. At meetings, I’ve looked around the room and seen mostly bright, good-looking people with a can-do attitude. Then, in “POLIO: an American Story” by David M. Oshinsky I read that there was a time when researchers concluded that those most likely to get polio were intelligent, good looking kids who were full of energy to the point where they kept going until they would hit the wall, rest, then go like crazy again. Sound familiar?
This issue features another report by Gladys Swendsrud. Her subject: yet another doctor/polio survivor, Dr. Torres-Gil.
Read a small part of the incredible story of Carol Thompson and her Blue Whale Project. I could write a book, but this teaser should give you an idea how gritty this woman is. She’s not just a survivor.
Hard driving polio survivors … I’m beginning to see a pattern here.
Have fun .... Rick
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SFBAPS March 15, 2008 Meeting
Presentation by fellow polio survivor,
Dr. Fernando Torres-Gil
Director of the Center for Policy Research on Aging at U.C.L.A.
Notes by Gladys Swensrud
The connection was instantaneous between Dr. Fernando Torres-Gil and the 70+ polio survivors attending the March 15, 2008, meeting of the San Francisco Bay Area Polio Survivors (SFBAPS). While many professionals who address polio groups throughout our nation know about polio, not many have actually lived the experience. As a fellow survivor, Dr. Torres-Gil related to us on a personal level unlike most others. And in the process, he touched our hearts with his memories, which mimicked ours to a “T.”
Dr. Torres-Gil has accomplished more in his young 59 years than most of us could hope to complete in nine lifetimes. His biography reads like an academic Who’s Who. A partial list of his accomplishments include: Director of the Center for Policy Research on Aging at UCLA, Adjunct Professor of Gerontology at USC, board member of AARP, national expert on public policy issues concerning health and long-term care, gerontology, ethnicity, human services, rehabilitation and disability. Dr. Torres-Gil has authored six books, and authored or co-authored more than 80 articles and book chapters. And he credits his drive to succeed to his life experience with polio.
Professor Torres-Gil first explained his love of the bay area and his bond with the San Francisco Bay Area Polio Survivors. When he contracted polio at the age of six months, he was first seen at Monterrey County General Hospital. The son of itinerant farm workers, he and his parents, along with his eight siblings, lived in Salinas, CA. However, young polio victims of that era were relocated to Shriner’s Hospital for Crippled Children, where youngsters up to age of 18 were cared for free of charge by the Shriners organization. Once past the initial viral attack, Dr. Torres-Gil spent many of his formative years hospitalized at Shriner’s Hospital in San Francisco, rehabilitating and undergoing a series of surgeries to improve the use of his polio affected legs.
Without criticizing or judging those early practices, he stated in matter-of-fact fashion the thoughts and feelings of our common experience. Through his discussion, we jointly revisited memories of the initial quarantine, separated from family members, followed by days, months and often years in the hospital with short, one-hour, Sunday visits with either one parent or the other. He explained his perspective on how the emotional needs of polio survivors were not factored into our care. Crippled children were pushed to be normal. The thrust of healthcare professionals was to push us to get well, push us to rehab and then push us to move on with our lives. He believes that gave us an incredible toughness with which we have faced life’s challenges and adversities.
The subject of his talk centered around Policy and Politics. Dr. Torres-Gil began by explaining that our country is presently engaged in a great debate on how we approach a public safety net for our citizens. The well known social services like Social Security, Medicare and Medicaid are running out of money to keep functioning past 2024. Change of some type is eminent. The question is: With the electorate adverse to taxes of any sort, how can services such as these be extended or funded?
Dr. Torres-Gil explained that as a nation we have become more and more inward looking. Taking care of “self” has become a priority over the common good. Our nation is at present without Universal Healthcare. Medicare is slowly being privatized, so the services are slowly deteriorating. He noted that the end result of this healthcare dilemma has three possible outcomes. In time we will be forced to:
- Use a second tier form of Medicare
- Forced to buy our own insurance
Or (for a select few)
- Have access to a group retiree supplemental plan.
The good news for polio survivors is that we are living longer than anyone ever expected; we have essentially survived the odds. However the not so good news is that our government is not prepared for the challenges we will bring to the system. Dr. Torres-Gil feels the great debate about healthcare will be about us. We are the group with the longest “preexisting medical condition” – a preexisting condition, which, in time, is likely to be in great need of services and support.
He reminded us that the birth of Baby Boomers spanned the post World War II timeframe from 1946-1964. By the year 2024, every Boomer will be over 60 years of age. At that time, when our social service safety net is most in demand, it will leave 70 (+) million Americans with minimal or no healthcare coverage, just at a time when they are also facing tremendously decreased income.
Dr. Torres-Gil has faith that the number of Boomers will force the pendulum to swing full circle, but it will take personal activism to improve those odds. The fact is: Boomers are not saving adequately to meet their future needs. And as years pass, the generous defined benefit plans which private companies once offered are quickly disappearing. When Social Security is no longer solvent, more and more people will be left to their own devices in solving healthcare problems. It will likely take the Boomer Generation to force our government to see the need for adequate care for the nation as a whole.
Returning to the dilemma of post-polio, Dr. Torres-Gil placed emphasis on the fact that Post-Polio Syndrome is premature aging. He noted that the secret to a longer life is to adequately pace yourself. He added that reducing stress and taking care of your physical health is mandatory to extending the best of possible outcomes. You can increase your odds of improved health by: Asking questions, listening and absorbing those lessons.
He suggested the following words of wisdom:
- Pace yourself.
- Never allow yourself to be fatigued. By resting adequately, you keep neurons alive longer.
- Don’t allow pride to deny your disability…Take “Administrative Downtime.”
- Watch your weight carefully. Dr. Torres-Gil stays on a strict diet and takes vitamin and mineral supplements as prescribed for his needs.
- Everyone needs some form of exercise and activity. He uses Pilates on an exercise mat, but uses NO machinery. He swims and he participates in yoga sessions.
- He cautions everyone to protect your surviving limbs at all costs. He knows that if, in time, he loses the use of his legs, with his hands and arms in good condition he can continue to function at a fairly high level. And he reminded us to avoid falls. They can leave us in a greatly weakened state.
Dr. Torres-Gil wanted to remind us that living this long moves polio survivors into uncharted territory. Few survivors to this point have lived past 65 years of age. We are facing an exaggerated form of premature aging, leaving us at 65 more nearly representative of someone 80-85 years old. He stressed that it would be wise to study gerontology and take special care of our emotional state.
We briefly touched on the issue of Long Term Care. He told us that there is no public funding for Long Term Care. Medicare has limited and restricted access, however if you are very poor, there is some support for you to draw upon. He noted that most organizations, which once offered Long Term Care services, have dropped new enrollment opportunities from their plans. They have realized that it is too expensive for them to continue to offer future services since there is no way to tell how long people will live and continue to draw on those resources.
Dr. Torres-Gil cited through his own personal experience after a recent femur fracture that the support you will find most invaluable and dependable is offered by family, friends and neighbors. You can count on their help, and you also have a greater likelihood of helping them in return someday. He stated that helping others is “priceless” in the rewards it can bring back to you.
He also reminded us to be proactive and assertive about our rights. Being your own case manager in pursuing any issue will help you understand it better and, in the end, stand you in good stead.
In closing, Dr. Torres-Gil told us that there is greater support in linking ourselves to other disabilities and diseases. PPS may be rare in the overall scheme or things, but we are much stronger if we stand together with other disabilities, multiplying our numbers many fold.
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Don’t Miss the
Abilities Expo Southern California:
May 30 – June 1, 2008
at the
Anaheim Convention Center, CA
$5.00 at the door or
For free registration, go to
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Blue Whale Makes a Big Splash
Texas resident Carol Thompson was near death in November of 2007 when she was lucky enough to make e-mail contact with a fellow polio survivor and vent user. To her amazement, other people with PPS were doing quite well in spite of having the same breathing problems, but with the aid of very different treatment than she had been receiving.
She quickly learned that five years of improper treatment for post-polio related neuromuscular breathing disorder had her CO2 level so high and her O2 level so low that when she finally managed a December appointment with breathing expert Dr. John R. Bach, he and his staff were shocked that she survived the experience.
They immediately put her on a volume vent, prescribed a cough assist machine, and generally helped her take mechanical control of her failed breathing muscles. Her blood gasses quickly started to regain balance and her mind started to clear up. With this new clarity came anger – Why had her local medical system failed her? How could it be that a self educated farm boy from half way across the country knew (had known for five years) more about the solution to her problem than her doctor did; more than anyone her doctor referred her to?
These questions led to more questions: Was she the only one? She nearly died – have others been dying for the same lack of information? If one person has known for so long, why doesn’t everybody know?
As it turns out, Carol Thompson is a real go-getter. She decided that there’s no excuse for this situation to continue unresolved.
Among other challenges, Carol is a legally blind survivor of polio and cancer, and suffering from closed head trauma. But that didn’t keep her from taking action. She started Project Blue Whale.
Carol wrote this introduction:
PROJECT BLUE WHALE
January 2008 –
Our awareness campaign was named after the wondrous blue whale because Polio survivors, and others with neuromuscular disorders, are being endangered by a large segment of our medical community (family medicine, anesthesiologists, internal medicine, pulmonology, neurology, etc.), and left to meet unknown physical challenges, or tragically die from neglect of a relatively easily addressed condition. Many clinicians, in the experience of Polio survivors, too often appear uninformed, refuse to communicate with known medical experts in the late-effects of Polio and/or polio breathing conditions, or choose to ignore classic symptoms of breathing/sleep problems as evidenced in medical literature (e.g. Pubmed).
In the case of those with Polio-related breathing conditions affecting sleep, breathing, swallowing, gastric mobility, and all vital organs. Hypoventilation is often not related to diseases of the lungs and/or the heart, unless it is ignored. Far too many Polio survivors are administered supplementary oxygen as a regular course of treatment (e.g. at bedtime), when oxygen must only be administered after careful evaluation of blood gases, allowing for subjective reporting of symptoms within a cooperative, well-informed medical milieu. The diagnosis of polio breathing conditions may be effectively carried out at the bedside, in the home, in a few minutes, avoiding costly pulmonary tests until determined such may be necessary by a competent medical team, after the Polio survivor has been provided with air, decrease in carbon dioxide, and assistance with coughing.
We must always be alert for the threat of having a tracheostomy when we have breathing problems, because many medical doctors turn to that as a way for easier access, but it is not needed in most situations; worse, our nursing homes are filled with people who 1) have no idea their tracheotomies may be safely removed, and they may breathe with a proper ventilator; 2) do not realize that they have options for home care, now (ref. Olmstead Act); 3) do not know whom to turn to for expert care regarding breathing problems. The role of the registered respiratory therapist has been completely ignored in the ongoing care of individuals with breathing disorders at home. Physicians must take responsibility for their referrals, not only to other physicians, but also to paramedical personnel, and medical vendors, with follow-up communications between the team, including the patient, and routine evaluation of conditions that warranted treatment, and referrals (i.e.: Sleep Studies, respiratory/swallowing studies).
We are identifying and passing on resources to help educate the survivors, caregivers, the medical community, and others who may want to be better informed. Like preserving our endangered species, Polio survivors should never be ignored; each survivor fought a valiant battle, only to experience the return of symptoms (some not present with the original attack) 25-40 years after their initial illness, at an age when adaptation to such conditions are far more challenging, affecting not only family and personal life, but very possibly career, personal relationships, hobbies, and overall health, if ignored, or not appropriately addressed.
This writer, for one, has twice had to travel more than 1600 miles to obtain appropriate medical care, each time the "treatment" was merely a non-invasive, protective, reasonable, no-cost adaptation to daily living to preserve the remaining motor neurons in our bodies˜50%-75% were lost during the original Polio attack. Such expertise rarely piques the interest of practitioners on local levels. Once one reaches 40 yeas of age, everyone begins to lose motor neurons as a process of normal aging, but for Polio survivors that may be disastrous, having already lost great numbers of neurons.
As advocates for Polio survivors, we see and learn about our people suffering needlessly, victimized by medical intimidation, suffering from improperly administered anesthesia agents, and other drugs that suppress the neuromuscular system, incorrect diagnoses such as Asthma and related medications, only to die while attempting to find help with what became seriously comprised respiratory systems.
Expert medical over-sight for people with neuromuscular conditions, and Polio survivors, at best, prepares the world for other serious viral infections. The survivors of SARS, a serious viral illness for example, will also experience conditions similar to the late effects of Polio, as Post-SARS Syndrome.
As we work together to benefit one condition, our planet in turn becomes healthier.
--
Update:
When Carol wrote to her local government complaining about the hospitals failure to perform, the governor’s office responded the same day.
On April 16, 2008 I received an e-mail from her informing me that she has been invited to “speak to Congress, and meet with House and Senate members, and MEDICARE!” on May 28 through 30. All expense paid for her, her equipment, and her respiratory therapist.
More on this story as it comes in.
R.E. Van Der Linden
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Keeping Christmas
By Nancy Carter [Snively], Christmas 1978
There are stars enough to take this many
And mold them into a song to give away,
But when we listen, it is there, to give away again.
There are stars enough to take a handful
And hammer them into a bell, to ring
The joy of birth, the ringing, like the stars,
As bright as anything we dream.
We may take stars enough to cast them
On the branches of a tree, but when
We stand back and look, the light
Is on our hands, and lingers there.
Keeping Christmas, we can think,
What is this song I meant to share,
But wraps my heart, and does not, with time,
Grow thin? Nor does it disappear.
What is this ringing, this chime I have made,
But you made before me and will be made again?
And what light is on my hands, what stars
Have given reach I did not plan?
--
Nancy Ann Snively
Poet, singer, advocate for the disabled, polio survivor.
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MEETING REPORTS
Note taker: Gladys Swensrud
The March meeting of the San Diego Polio Survivors was attended by 19 members. We welcomed those attending for the first time, and welcomed back a couple of attendees who rediscovered us post-retirement. We extended hardy Polio Survivor greetings to Ruth, Harriet, Roger and Kathleen. And we offered best wishes and a heartfelt get well to Lenora Kneeshaw. All our thoughts and prayers are with Rick and Lenora during this trying time.
General introductions around the room included responding to the following question: With spring quickly approaching, what would you throw out or get rid of as you start your spring cleaning? The answers were varied and sprinkled with humor as each person shared their personal starting point. Those who have recently downsized to smaller living quarters in an effort to simplify their lives entertained us with the fact that once enough time elapses, the clutter just begins anew. No doubt we’ll all begin this year’s spring cleaning projects with a smile remembering that everyone experiences those same “clutter demons.”
We took a moment to re-introduce Marilyn and George Loba. Marilyn is the new leader of the Escondido PPS group. She extended an invitation for everyone to attend their next meeting, which will be held the second Tuesday in April, 4/8/08, from 1:00 to 3:00 at the Joslyn Senior Center, Dorothy Boeger building, 728 N Broadway, Escondido. The Escondido meetings are held the second Tuesdays of even months, and the San Diego Polio Survivor group meets the second Saturday of odd months. By alternating months, San Diego County offers meeting opportunities every month of the year.
Our guest speaker for today’s meeting was Judi Ravetti, owner of Adaptive Clothing in La Mesa. Her line of clothes is specifically designed for people who struggle with limited mobility. She brought along an entire rack of specialty items. So that we could easily understand the advantages for use on people with different and varied disabilities, she described their use in detail.
Judi’s line included many items with snaps up the back – on the sides – or at the crotch, allowing easy access and fitting for people who stay seated a majority of the day. Her collection is based on comfort and ease of use. There were many pieces for wheelchair bound individuals, including dusters, T-shirts, pants and slacks, polo shirts, one piece jumpsuits, terry covers, ponchos, undergarments, and various types of coverings for feet and limbs.
Judi mentioned that it would be impossible to carry everything in-store, but she indicated that she is more than willing to search for and locate special order pieces for which you might be searching. For information or to arrange a presentation you can contact Judi at:
Judi Ravetti
Plaza La Mesa
7960 University Ave. #240
La Mesa, CA 91941
Telephone # 1-619-460-1702
After a short break, we reconvened and had time for open discussion. It was a good opportunity to talk about PPS exercise limitations and different fitness programs around the San Diego area. As we all agreed, there are limitless opportunities to stay somewhat fit within the bounds of our individual activity and energy restrictions.
Roger displayed a pedometer he uses daily to keep track of the number of steps he actually takes in a day. Although most of us have a desire to work toward better fitness, we recognize an organized program might not be in our best interest with our muscle limitations. Sometimes we actually cover more territory getting from Point A to Point B than we give ourselves credit for accomplishing. He feels tracking his progress with the pedometer makes him aware of how much area he covers. It might also be a good way to avoid overdoing.
We talked about the next Post-Polio Health International, PPS Conference, which will be held in Warm Springs, Georgia, in 2009. Jointly we agreed it would be fun to have a group attend from our area. We’ll be thinking in terms of incorporating it into our future vacation plans.
Our meeting was adjourned at 11:40am, but many of us stayed in the room and continued talking well past 12:30pm.
The next San Diego Polio Survivor meeting will be held at 10:00am on May 10, 2008, at Kaiser Permanente’s main hospital, 4647 Zion Ave. in Classroom #2. Our guest speaker will be from the San Diego County Office of Emergency Services. He/she will discuss emergency preparedness for the handicapped.
___The next San Diego meeting:___
May 10
_______________________________
Regular meetings (until further notice) are at 10 AM on the second Saturday of odd numbered months at:
Kaiser Permanente 4647 Zion Avenue San Diego, CA 92120.
For more information call Rick Kneeshaw email piecon@mindspring.com
Or go to http://polio.home.mindspring.com
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It is with deep regret that yesterday I learned that Dr. Bob Rose, chiropractor and Polio Survivor of 1947, passed away Dec 31, 2007 at Eisenhower Medical Center in Rancho Mirage from pancreatic cancer and multiple organ failure which progressed over recent weeks. He developed Post Polio Syndrome just 6 years ago but also he had severe osteoporosis and falls caused him to have both hips replaced in the last few years. Bob was just 65 and had an active chiropractic office for over 30 years with 10 years of that being in Palm Springs. He is survived by his son Christopher in Washington State and his niece Kelly in Los Angeles. Bob was a black belt Karate expert and Karate teacher for many years. He had traveled and studied in Tibet and India many times and was a deeply spiritual Native American of the Choctaw Nation. He also served the Coachella Valley AIDS Project for many years as a volunteer to provide chiropractic service to AIDS victims. He had to give up his practice due to weakness from Post Polio Syndrome about 5 years ago. Bob was active in AA for over 25 years and continued attending meetings until fall last year when he became homebound. He was a bird and cat lover and a gentle loving man. There was no service for him as his son was here only a few days after his sudden death on Dec 31 and no one was notified of his passing except his caregiver Lulu. She was very faithful in providing assistance to Bob for the last several years and she was like family to him. Unfortunately I was not able to see him after October 2007 due to my own illness but last talked to him on the telephone just a week before he suddenly died. I know I will miss him greatly as we had a close friendship and laughed together a great deal. He always had a smile regardless of his pain level (which had been very high for several years) and always had kind words for his friends!
You know, Bob, as a Native American, always believed that the spirit could return as an animal or creature. For whatever it is worth, there was an occassion once when I was going to court to fight for my workers compensation case and Bob wanted to go with me but he couldn't. I swear there was a red tailed hawk that sat outside a resturant staring at me for over an hour. Bob told me it was his spirit going with me. Well I laughed at that. Since Jan 1 I have had a red tail hawk or Cooper Hawk swooping in my yard to chase away birds or just sitting on a bench or in a tree in my back yard at least 4 times. Now I wonder............. do you?
Make a Memory! Linda
[The following report was not included in the printed edition of the May issue - ed]
Ability Center of San Diego...serving Arizona, Southern and Northern California and Nevada will be having a complete in service meeting at the Coachella Valley Post Polio Support Group meeting on Friday, June 13th....10:00 am until noon. The Ability Center offers a "One Stop Shop" for sales, rentals and service for everything related to mobility and independence, Scooters, Van Conversions, Lifts, Wheelchairs. Ability Center has a very interesting website www.abilitycenter.com . We would like to invite everyone to this meeting. We meet at the Portola Community Center, 45-480 Portola Avenue, Palm Desert, California 92260, on the corner of Portola and Shadow Mountain Drive. For further information please email Joe Camaya or Barbara Hall.
Joe
_____The next meetings:_____
May 9
June 13
____________________________
2nd Fridays at 10 AM at Portola Community Center, 45-480 Portola Ave, Palm Desert CA Park in rear.
For information, contact Joe Camaya stan-n-ollie@msn.com,
or Barbara Hall whall233@aol.com, or Bob Braddy rbraddy@dc.rr.com
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The Escondido PPS Support Group met on April 8 at the Joslyn Senior Center. After introductions and sharing how each of us found this group, we welcomed two new people at the meeting. There were fifteen of us who welcomed our speaker, Joanne Price, owner of ResponseLink and author of the book published last year, “Fall Prevention for Older Adults and Those Who Care For Them”.
Joanne gave her background and shared that in response to her mother’s health, she became a small business coordinator for an exercise group for seniors before purchasing RespnseLink five years ago. ResponseLink allows seniors and disabled people to remain in their homes by providing an emergency notification by wearing either a necklace or bracelet which can send a signal to ReponseLink in case of an emergency.
Turning to the subject of fall prevention, Joanne reminded us that fatigue is a major factor in many falls. She demonstrated and we practiced better posture by not bending forward. She also demonstrated the proper position to use a walker. Balance is another factor in many falls. Demonstrating stop before turning and heel to toe walking we were reminded to think of how we walk so that we can prevent a fall that could act as a trigger for our post polio symptoms.
We were amazed to learn that $20 BILLION per year in costs can be fall related and that most falls occur on smooth, straight flat surfaces. One of the greatest risk factors to falling is the fear of falling because by being afraid often causes people to walk forward instead of upright. We were encouraged to wear the type of footwear that makes us feel most comfortable. Often changing the type of shoes will make us more likely to trip and fall.
In which room do most falls occur? The bathroom, of course. Don’t rush to the restroom - strengthen muscles and don’t wait too long. Remove throw rugs. Use shower chair and bars. Have a removable showerhead installed. Avoid bending backwards when rinsing hair.
Other hints? The average door opening indoors is 28”. Have doors widened to 36 to 42”. Check medications for interactions that may cause disorientation. Also evaluate medications regularly to eliminate those which are no longer useful. As we age, our depth perception worsens so use aids such as tap lights to light the path in the darkness.
Joanne also recommended that we watch a video entitled “Don’t Fall For It” on the county station.
What if I fall? First, relax, don’t panic as you fall. Give your body time to adjust before you move. Roll to the side that hurts the least and stay resting until comfortable. Place your hand in front of your chest and push yourself up. In this position, your voice will carry more and you will have a feeling of success. When ready, push yourself to a sitting position if possible. In the sitting position, you can scoot to reach help. And, have your phones reachable from the floor in case you cannot get up without help.
Most of all, as Winston Churchill once said, “NEVER GIVE UP!”
Joanne was an informative and entertaining speaker and we really enjoyed her presentation.
The remainder of the meeting was spent getting to know each other and sharing stories. I closed the meeting with a reading about Simmie, a young girl who had polio in 1912 and who never was given the opportunity to become independent or feel useful. We are blessed to be born in a time when we could live meaningful lives, learn, pursue careers, have families and be all that we can be. And we are blessed that we have found each other so that we can stand together.
Submitted by Marilyn Loba
Our next meeting will be on June 12th. Our speaker will be Carlos Valenzuela of Progressive Orthopedics.
______The next meeting:______
June 12
____________________________
Regular meetings on the second Tuesday of even # months from 1:00 to 3:00 at
Joslyn Senior Center, Dorothy Boeger building, 728 N Broadway, Escondido
For more Escondido info. email Marilyn Loba ppsnorthsd@cox.net
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Hi Everybody.
Our meetings are casual and informative. We discuss personal issues in dealing with PPS, doctors who work for us, and those who don’t. Stuff like that.
At our April meeting, Rick brought his guitar and quietly finger-picked through the entire meeting setting a peaceful atmosphere.
I’d write more about what we discuss, but you’d have to be there to really get the full impact. You should try it.
We’ve scheduled our summer party for July 13, 1 to 3 PM, at Valley Wide. Look for more information in the July issue, or email Rick.
If you are interested in guest speakers, give me some suggestions.
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Free ability equipment available in Hemet. Small wheelchair, 2 walkers, one with wheels, one without. Email Rick
Have fun … Rick
_____Our next HAPS meetings are:_____
May 20
June 17
____________________________________
Regular Hemet meetings are at 11 AM to 12:30 on the third Tuesday of every month at:
Sun West, 1001 N. Lyon, Hemet. For more info email RickVDL - ppsman@adelphia.net
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The summer BBQ is planned for August 16 at the Mahoney home. Look for more information in the July issue.
____The next Riverside PPSG meeting:____
June 21
______________________________________
Riverside PPSG Meetings: third Saturday of even # months at 10 AM.
at the home of Bryan & Judy Mahoney, 3465 Ramona Drive, Riverside CA.
For more info. contact: Judy PPSRiverside@aol.com
or Betty McFarland bbooplink@aol.com
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For information contact Marsha Hart at healthwithhart@charter.net
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HIGH DESERT (VICTORVILLE) PPS GROUP
We attended a Celebration of Life in Newberry Springs for Nancy A. Snively on Feb. 24th Nancy was part of the Hi Desert PPS Group and traveled with her Husband Wayne for over an hour to get to our meetings. Nancy treated us as family as she did with most people she knew.
Nancy was a published author, gifted back-up singer, and proofreader and technical writer at Security Pacific Band where she was promoted to assistant Vice President. Nancy was a childhood polio victim and a lifetime supporter of the democratic process, she was an advocate for the disabled and disenfranchised, and worked tirelessly for their empowerment.
Donations to the PPS newsletter were requested in her name.
[The following report was not included in the printed edition of the May issue. I wonder how many people noticed I printed the wrong meeting dates - ed]
The High Desert PPS luncheon mtg. has been changed from the 2nd Tueday to the 2nd WEDNESDAY of every month. The May mtg. will be at "The Grumpy Golfer" at the Green
Tree hotel. We are having a Travel Agent give a talk about handicap traveling.
We've had no other speakers, but I've copied and passed out a lot of information from Post Polio Gazette. Locations for luncheons will vary, but call the numbers provided etc!
Check out Handicappedfraud.org for some interesting information.
__________Next meetings:___________
MAY 14
JUNE 11
___________________________________
Regular meetings: Second Wednesday of every month. Location varies.
For information contact Vi at (760) 949-6775, or e-mail BillHerold@aol.com
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Polio Survivors Plus initially kicked off the New Year with the first in the three-part series of programs that brought in five featured guests who informed meeting attendees that it's important to "Be Prepared - Special Needs Disaster Planning." With table-top 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 neighborhood efforts (like the role that the Laguna Woods Village Disaster Preparedness Task Force Committee) works 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," featuring physiatrist Carol Vandenakker, MD, director of the Post-Polio Clinic at UC - Davis Medical Center was highlighted in the March issue of the PPS Manager Newsletter.
[The following report was not included in the printed edition of the May newsletter - ed]
"Truths About Tooths" is the scheduled Polio Survivors Plus (PSP) program of May 28th, scheduled for 1:30-3:30 p.m. in LWV Clubhouse 3, 23822 Avenida Sevilla in Laguna Woods, CA.
Featured guest speaker Andrew Lin, DDS, will focus on the reactions that (people with disabilities [PWDs], especially) PPSers, may anticipate with dental surgeries, procedures and medications. His presentation will also offer recommended solutions for being prepared for and for dealing with unforeseen "emergencies." In addition, his talk will include techniques for establishing and maintaining good dentist-patient relations. The latest tools and adaptive dental equipment that can help each person to achieve optimum oral hygiene will also be presented, along an overview of Dental Clinic services that are available at Rancho Los Amigos National Rehabilitation Center in Downey, CA. Terri de Bord, DDS, serves as the department's Chief of Staff.
If you have concerns about dental care, dental procedures or dentally-related matters and cannot attend the meeting, email your questions to efminder1@cox.net or fax them to (949) 830-9449 prior to May 26, 2008. Reservations for attending this free program are required to arrange gate entry and to ensure that ample meeting refreshments are provided for your enjoyment.
Meeting Reviews & Community Partnership
The past March 26th program of PSP was the final segment in the "Be Prepared" series and focused on how best to "Brace Yourself," a pictorial presentation made by fellow PSP polio survivor and orthotist Glenn Ham-Rosebrock.
PSP entered a 2008 partnership with California State University - Dominguez Hills, helping to arrange for volunteers who will provide live lab opportunities to help train future orthotists and prosthetists. The program presentation featured a report on past CSU - DH volunteers, which included PSP members Nancy P., Lynn P. and Harry Q., who are polio survivors. The presentation also featured stroke victim Paul Smith, MD, along with others in the 2007 certificate program.
This year, PSP volunteers provided a few hours of their personal time from May 28th to June 3rd to help with this educational venture. In return, PWDs who participated in the 2008 program, received at no charge, independent assessments of their bracing needs.
The Orthotic Certificate program of CSU - Dominguez Hills requires university graduates with a minimum of a Bachelor's Degree to devote five months of training and nine months of on-the-job experience at certified facilities before taking an exam, which if satisfactorily completed, provides future orthotists and prosthetists with certifiable credentials from Northwestern University.
A complete audiovisual set of February's PSP presentation by University of California - Davis' Carol Vandenakker, MD, is nearing the final stages of reproduction and will be made available for all interested very soon.
Final "Heart Wide-Open" Reflections
Lastly, Polio Survivors Plus extends sincerest condolences to the family, friends et al. of Irene Zeidenberg. Services for a dedicated Polio Survivors Plus charter member were held on April 24, 2008 to pay last respects and to reflect upon the life of a talented fashion designer for notable dignitaries and countless movie stars, who dedicated the final years of her life to being PSP's program speaker hostess and ambassador at Avalon Las Palmas. With her eyes now shut, Irene taught everyone by her example which was nearly a century of unlimited caring with wisdom and wit to enjoy the highest quality of life with her heart ... wide open.
For further information about PSP's services and upcoming programs, contact Sue Lau.
___________Next meeting:____________
Contact Sue Lau
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Regular meeting are held at Laguna Woods Village's Clubhouse
323822 Avenida Sevilla, Laguna Woods, CA
For information and to RSVP for gate entrance permit, contact: Sue Lau Maliebchen@aol.com
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Dear Rick,
The latest PPS Manager was the best yet! The Dr. Vandenakker article was especially good info.
Alice Gowing called and Nick and Virginia wrote to tell me about Mary Clare. She was a remarkable lady. She and I spent a lot of time together thinking of ways to spread “the word!” She did it faithfully and fearlessly.
Thank you for all you are doing.
Virginia
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Hi Rick
Once again, many thanks for a wonderful PPS Manager newsletter. After years of receiving a variety of post-polio newsletters from around the world, I am delighted to find that there are still wonderful articles to read and enjoy.
Gladys Swensrud and Sue Lau did a wonderful job preparing the succinct overview of Dr. Carol Vandenakker's presentation: "Post-Polio Syndrome: Now and Into the Future." It is excellent - Just the type of precise overview that PPSers need to "educate" others.
The other item that I found particularly useful was Gladys's write-up of the San Diego group's roundtable discussion "What Works for You." It's these types of suggestions that help all of us in our daily lives. I'm certainly going to be checking out the below-the-counter microwave as I dream of the day when I don't have to stretch quite so-o-o-o-o far from my wheelchair to the microwave. There have been the odd occasions when I've dumped my warm oatmeal in my lap and over my wheelchair - a devil to clean up!
To you and your team - keep up the excellent work!
Cheers from the North where Spring is just showing its head,
Jennie Bedford
Maple Ridge, BC, Canada
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Rick,
In the January newsletter a Sandi wrote about using the VA. Do you know her and is she a Vet? I am one as well and have not had much success finding a doc at Jerry Pettis, VA that knows or understands PPS. I wonder if she would mind if I wrote to her? Would you be so kind as to send her my email please? It would be great to talk to another vet about some of these problems.
I keep my Kaiser doctor in San Diego because he is eager to learn with and/for me.
Thanks a million for the newsletter, as they say, you learn something new everyday and I learn something new every time the newsletter comes out!
Happy spring and keep those good thoughts coming!!!
Kay Mears
Kay,
Have you heard about Kaiser San Diego's Neuromuscular Breathing program? Contact Gladys Swensrud (swensrud@pacbell.net) for information.
Also, I've learned that, because of the great number of brain injuries in Iraq there are over 300,000 vets needing full time care. The strain on the VA's funds is making things hard for the old timers with new and unusual problems. New avenues may have to be explored if vets with PPS are to get the help they need.
If you [or anyone out there in PPS Manager land] figure it out, please let us know.
Rick
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Hi Rick
I contracted what I believe to be the boomerang flu last week and after 6 continuous days in bed am only now able to sit at my computer (and I will be laying down shortly). While I was able to keep what little food I ate down I was unable to stomach anything other than juice diluted with water, and crackers. I've lost 6 pounds. I don't ever remember having a flu that lasted this long. Is this typical for PPS survivors?
Michelle
Hi Michelle
I would guess that we are more likely to catch a bug if we are run down, and who among us doesn't push the limits? Then, when we get sick, we're more likely to become fatigued, and therefore less able to overcome the overall flu induced weakness others might experience.
I recently caught what's probably the same thing you have. And I hear it's going around. It started with a mild case of diarrhea, then throat irritation, then cough and bronchitis, now an ear infection, and the diarrhea persists. It's been three weeks. Otherwise I feel fine.
Oh, and I'd love to lose at least 6 pounds :-)
Let’s see if anyone writes in about it.
Rick
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Dear Rick,
I recently published a book called Love, War & Polio: The Life and Times of Young Bill Porteous . It's a bio/memoir kind of book but is also, I am told, a wonderful primer on polio for the uninitiated - as well as on the WWII era. The book has sold extremely well here in Michigan and has already gone into a second printing.
Further information on the book - cover, sample passage, blurbs, etc. - can be found at http://RatholeBooks.com. I hope you will take a look.
I would be happy to answer any questions you or your membership might have. I hope you will help me spread the word about Love, War & Polio.
Sincerely,
Tim Bazzett
RatholeBooks.com
330 W Todd Ave
Reed City, MI 49677-1128
231.832.2692
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Rick,
Thank you for putting PPS Manager online. Do you need a donation for the month or the year?
I’d be happy to send you a check.
Also, my doctor said I need a personal trainer for me to tone up and trim down and wrote me a script for it. I asked if the trainer was experienced with PPS victims and the doctor said the woman is highly qualified for “any condition.”
I’m a little uneasy about this recommendation to “get in shape” as I get tremors after weeding 12 dandelions, and 10-15 minutes is my limit for doing any physical work, such as yard work or vacuuming. What do you think about my engaging a trainer?
Thanks for your help.
Valerie
Hi Valerie,
Yes, a check would be most helpful. Thanks for offering.
Losing weight is certainly helpful, but exercise isn’t always the way for us. The general rule is to do as much as you can without causing pain, weakness, or muscle twitching. Beyond that, all you can do is eat right and eat less.
Things that might help: non-strenuous warm water range of motion exercise, green tea, fruits and vegetables, low-fat protein (egg beaters, poultry, legumes, etc.) all in moderation. Cut out canned beverages, snack foods, and white stuff like sugar, wheat ... you know – processed junk.
You know better than any personal trainer. Your doctor or trainer may think you simply need motivation. They don’t really know you. Those tremors from weeding the dandelions tell you your limits.
I’m finding that my ability to perform physically has increased dramatically since I went on the bilevel. I do five times as much (still only about 20% of what I would prefer to do :-), and when I get burning muscles I stop and nap using the bilevel, and recover in 45 minutes.
All these things have helped me lose about 20 pounds, though two weeks of laying around due to a cold, brought back 10.
It’s not easy, but we’re determined people.
Rick
Valerie followed up with:
“… I found a book, Spontaneous Healing by Andrew Weil, M.D. In the book, Dr. Weil writes “Trager Work is one of the least invasive forms of body work, using gentle rocking and bouncing motions to induce relaxation. In addition, Trager work can help facilitate the nervous system’s communication with muscles, and be helpful as a rehabilitation method, especially for people suffering from post-polio syndrome and other chronic neuromuscular problems.” The book lists The Trager Institute, 33 Millwood, Mill Valley, CA 94941 (415) 388-2688”
If you have experience or further information on the Trager Method, please let us know.
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Hi Rick,
Thanks for the great job you do on the PPS Manager. I truly enjoy reading it. There is so much good reading and good advice in that newsletter.
Keep it coming.
Thanks again.
Judy M.
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Dear Rick,
The enclosed donation is to help keep the PPS Manager going. THe publication, especially the March issue, was excellent. It always is. It’s chockfull of information.
Lois Jackman – www.yesican.com
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THANKS
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. Your contributions keep this thing alive.
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The PPS Manager is published every other month by RE “Rick” Van Der Linden and is presented as management ideas.
To offer financial help, submit ideas, writings, or commentary, e-mail Rick at: PPSman@adelphia.net
Information contained in this newsletter
is not intended to be a substitute for professional medical care.