January/February 2009
In this Issue:
Healthy Body, Healthy Spirit- Rick's New Year Message
Class Reunions - From the desk of Dr. Henry Holland
Climbing Teotihuacan - by Yolanda Ceseña
Letters and much more…
Meeting reports:
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FROM THE EDITOR
Hi Fellow PPS Manager,
I never make resolutions, but I do like to start the New Year on a positive note.
This year's message, Healthy Body, Healthy Spirit is based on the premise that once we have done all we can to be our physical best, the next step would be to find a way to express our true selves
For the sake of neutrality, I tried to do this without bringing religion into it, but found there's no right way to say what needed to be said without exploring our spiritual side.
Researching the article was an eye opening experience that led me from the mere physical challenges of PPS through the concepts of self-expression, spiritual examination, human relations, and finally on to the subject of preparation for the end of life.
As you'll see I cut the article short, leaving a simple outline of the last subject. The outline itself is enough to give us the idea.
If nothing else, it will give you plenty to think about while sipping tea by the fireside.
Update: Contributions have been outstanding. Thanks.
Your letters have been very positive and encouraging. Sorry I don't have room to print them all.
Have fun .... Rick
Listen to Rick play and sing Old Chunk of Coal (Dial-up connection may take 10 minutes or more to download.)
Healthy Body, Healthy Spirit
By R.E. Van Der Linden
PPS basics: the short story
PPS is a neuromuscular disease. The poliovirus chewed up connections between the brain and random muscle cells leaving each polio victim with his or her own individual collection of weak muscles. Though rehabilitation may reestablish lost connections, later in life those weak links show up as the disease we call Post Polio Syndrome or PPS.
Learning to live well with PPS involves (in order of importance) lifestyle change, assistive devices, and medications.
Lifestyle changes may include retirement (that is, going on disability), activity reduction, learning to use pain, muscle twitches, and fatigue as a management tools, accepting help from others, meditation, assigning less importance to some daily tasks. Mild water exercise often helps, as does a high protein diet. There is an endless list of helpful tips available from other PPS folks at meetings and online.
Assistive devices may include a scooter or power chair instead of a cane or crutches, leg or back braces, and/ or bilevel ST breathing support (out with the bad, in with the good).
Over time, activity management, diet, and assistive devices may not be enough. Helpful medications may include non-steroidal anti-inflammatory meds such as ibuprofen, anti-seizure medications, and/or anti-depressants to relieve stress. As a last resort, stronger pain medications may be needed.
Now what?
If your body isn’t working right, you can’t have a clear mind. Without a clear mind, you can’t fully express your unique Spirit. When PPS is managed properly, you will have the best possible body function.
Positively expressing yourself is good for you. It’s the next step in wellness. So …
Set a good example within your community.
Sometimes being brave involves showing your weakness. Just one example:
There’s no shame in using wheels to get around, in fact, it’s something to be proud of. When I first went out on wheels, I was embarrassed to be seen as this big strong-looking guy on a geezer-mobile, but since then I’ve realized that it’s pretty smart of me to be a smiling, brain-functioning roller instead of a slack-jawed, brain-dead, foot-dragging zombie. It’s all a matter of attitude, and if you show this to your peers, you’re helping them be the best they can be.
Elder wisdom
The September 2008 Post Polio Newsletter from the Post Polio Network of WA (Western Australia) cover story featured WA’s oldest polio survivor who had just turned 103. The story tells how Emily Davis likes to tell stories about the old days. I’m sure she shares plenty of little nuggets of wisdom we can all use in these troubled times. It’s a great stress reliever for the younger folks to hear how the older generation survived hard times. Just being reminded that it can be done is encouraging.
Volunteerism: Helping others helps you.
After getting her breathing problems under control, Gladys Swensrud began volunteering on the pediatric floor at Kaiser Permanente’s Hospital on Zion Avenue in San Diego. She wraps the children in blankets she makes, and reads to them. She has also used a great deal of her energy in successful campaigns for the good of the PPS community – The San Diego Zoo scooter/powerchair challenge and establishing the Kaiser Neuromuscular Respiratory Program.
After physical disability forced him to go on Social Security disability, Jim Mehalik thought his life would be empty and fruitless. Then he started taking the word of God to prisoners. It’s not a full time job, but he finds these few hours a week more fulfilling than any full time job.
If you read this newsletter, you have a general idea of the work I do for the newsletter. Your letters of appreciation brighten my spirit and keep me going. Also, once or twice a month I play music for Alzheimer’s patients and elder care facilities. I get an incredible energy boost when I see an otherwise unresponsive Alzheimer’s victim smile or sing. I even watched a head trauma patient sing along with me as his helpers cried – he hadn’t responded to anything in over three years. Who do you think got the most out of that experience?
Have you heard of 82 year-old polio survivor Lee Seitz?. Polio left only one toe functioning, and yet she runs the Polio Survivors Foundation. Working out of her Reseda, California office she helps polio survivors acquire assistive devices free of charge. What an amazing example for us all.
Get involved with your PPS group. Make phone calls as Bunny Smith does for the Hemet group. Help with the planning and organization, or just attend. Being there helps others, and that’s good for you. There are dozens of ways to help others from your home or scooter.
Artistry (write your story, paint, crafts, music, etc)
We all have a story to tell – a legacy to leave behind. You can do it with words, music, paint, clay, feathers, or whatever. Just do it. It doesn’t have to be great, it just has to be YOU.
Spiritual vs. Religious
A major part of our overall health is connected to our spiritual wellbeing. Up to now, this article has dealt with the physical aspects of health for good reason. Though the body and mind are one, we have to feed and care for the body in order to have a platform to build on. I chuckle to think of the old Catholic school admonition, “My body is a temple of the Holy Ghost” but there’s truth to it.
So, let’s move on.
Many of us are stuck at home and, though we feel the need to attend church, can’t get there. Is going to church a necessary part of our spiritual well being? To some people it is. But there are alternatives.
What is Spirituality?
From the dictionary:
“From the word spirit – Latin for breath. Also, a person’s true self.
Intangible elements of utmost importance to a person’s sense of reality, transcendence, meaning, and their place or purpose in the universe.”
Everybody has some kind of spirituality. In fact, your spirit is like your fingerprint. Every one is different. That’s why there are so many different religions to choose from and that’s why none may seem just perfect for you.
What is Religion?
From the dictionary:
“From the Latin word for ‘to bind or tie up.’
A particular expression of spiritual beliefs, usually involving a code of ethics, doctrine, dogma, metaphors, myths, and a way of perceiving the world.”
Most Americans have this, particularly late in life, or when threatened. (75% by recent study results, though the actual number may be on the rise in these particularly troubling times.)
Here are some more definitions for you:
Health = lack of suffering.
Suffering = disease (dis-ease) = spiritual pain = disintegration of all or part of self, split apart.
Manage the disease, overcome spiritual pain, integrate self (get yourself together), you’re good to go :-)
Religion can help:
By associating with people of like belief, you feel better about yourself.
By healthy practices such as no smoking, drinking, etc.
Some religions teach you coping skills.
General support during hard times (someone to lean on)
Exploring your spirituality, with or without religion, can provide peace of mind through meditation, a feeling of cosmic connectedness, self-knowledge, and self-awareness – all of which reduce stress.
Spiritual issues late in life:
Did you by chance catch the movie The Bucket List? “Bucket list” has become a catch phrase these days for the things you want to accomplish before you die – before you kick the bucket.
Modern psychology tells us that we may be unaware of the burden created by the things left undone in our lives: unfinished projects, unfulfilled dreams, debts, un-given forgiveness, and so on.
A good spiritual attitude can help us recognize these issues and decide if we can do something about each issue, or just let them go. The Serenity Prayer, written around 1934 has become the mantra of Alcoholics Anonymous, though it fits into every life. Though the writer was a minister, and the content has a definite religious context, it’s easily transferable to those non-religions folks by concentrating on the intent. Here it is in its original form:
The Serenity Prayer (unabridged)
God, give us grace to accept with serenity
the things that cannot be changed,
Courage to change the things
which should be changed,
and the Wisdom to distinguish
the one from the other.
Living one day at a time,
Enjoying one moment at a time,
Accepting hardship as a pathway to peace,
Taking, as Jesus did,
This sinful world as it is,
Not as I would have it,
Trusting that You will make all things right,
If I surrender to Your will,
So that I may be reasonably happy in this life,
And supremely happy with You forever in the next.
Amen.
--Reinhold Niebuhr
As used by Alcoholics Anonymous:
God grant me the serenity to accept the things I cannot change,
courage to change the things I can,
and the wisdom to know the difference.
Enough for now! (almost)
This article has been a rough estimate of a presentation I gave to the Polio Survivors Plus group with a few additions and deletions. I started that presentation by singing the song Old Chunk of Coal (I’m just an old chunk of coal, but I’m going to be a diamond some day) and finished with a song that, during my rehabilitation from polio, inspired me to carry on. That song is “Suddenly There’s A Valley”.
Music is the special language of the spirit. Listen, play, enjoy.
More to think about:
Below is a part of the outline I include here to give you something to think about. You can spend hours thinking about each of the following:
Consider: loss, mortality, dignity, hope, isolation/connection, meaning/purpose, closure/legacy.
“Hope is not a way out, but a way through.” – Robert Frost
Let’s hope we can make sense of this life, no matter how it turns out. – Rick Van Der Linden
Keep growing and improving: integrity, dignity, relationships, meaning, transcendence, comfort, preparation.
Prescription: life review, legacy, volunteer, support group, spiritual leader.
Five statements of closure: forgive me, I forgive you, thank you, I love you, good bye.
There is no real meaning to your suffering;
There is meaning to your life.
Rick Van Der Linden
[About the author, Rick Van Der Linden: I had bulbar polio at age 6, diagnosed with PPS in 1994. Raised a Catholic, I went through 12 years of Catholic school, married a girl who was raised strict Pentecostal. After a few decades re-evaluating my spiritual connections, I learned that my spiritual fingerprint is closer to that of the American Indian before the white invasion. This came to light after reading a rare book entitled The Gospel of the Redman which seemed to outline the simple, natural spiritual fundamentals all religions are based on. My favorite quote: “It takes few words to speak the truth.”]
Special note from Rick for my Internet friends only: In 1955, after two years of rehabilitation from polio, I found inspiration from a popular song performed by Gogi Grant. Click to listen to my rendition of Suddenly There's a Valley.
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Class Reunions
by Dr. Henry Holland
Often on the Internet Polio list services, writers will frequently sign their names followed by something like “Class of 1950.” This method of identifying the year that one had polio started some years ago. Of course these “classes” of people who had polio extend over many decades. Perhaps this is proper. From the onset of polio to the current time when many of us are living with Post-Polio Syndrome (PPS), all of us have learned a lot and have achieved an education that is not recognized by a formal degree. Probably most of us have earned a doctorate in philosophy in polio or a Ph.P.D.
I had polio in 1950 at the age of eleven. Throughout my adolescent years and young adult years I wore a long leg brace on my right leg and developed some scoliosis as I grew. I had much insecurity during the second decade of my life. I felt I was competing on an uneven playing field. I loved sports but could no longer compete in sports because of my physical handicap. As compensation I covered sports for my high school newspaper and for my college newspaper. I also did some coaching of younger boys and even some peers during these years. In college and medical school I did some intramural coaching of basketball. In many arenas I think I compensated well, especially in my academic studies.
Forty-five years ago I graduated from college. I went to college on a scholarship based on academics and partly on my intention to become a doctor (physician). This goal was directly motivated by my experience with polio. The college I attended for four years was situated on top of a hill in the Valley of Virginia. Every day I climbed that hill at least twice a day in order to attend classes and labs. The brace on my right leg and the strength of my left leg made those climbs possible. The same challenge occurred in medical school. Again, I was fortunate to attend medical school on a National Foundation Scholarship. The medical school that I attended was also situated on top of a hill. I climbed hills and steps to get to my destination. For the twelve years involving high school, college and medical school I managed to get where I needed to go on foot. In retrospect it was amazing how durable my overall health was during this time. I never missed one class because of illness or injury during those twelve years.
A few days ago I attended my forty-fifth college reunion. The college I attended was all male until twenty years ago when it became coed. Thus, the people at the reunion were many male graduates and their wives. All of my classmates in attendance were walking and only one had any sign of a disability. This classmate was walking with a cane because he had a bad hip. Most of my classmates had gray hair or their hair was obviously colored. Some could stand to lose a few pounds. However I was the only one in a wheelchair and the only one on the entire campus using a ventilator.
These men and their wives were my peers. Looking around the room at one of the receptions the reality of PPS impacted on me. Forty-five years ago I had walked across the campus with them on my graduation day and I “walked with them” with my brace on my right leg. At this reunion I could only roll with them; thanks to modern technology. The change in me compared to forty-five years ago was directly resulting from PPS. My classmates did not have PPS. All of us had aged but what happened to me was more than aging.
There are many medical articles which attempt to explain the causes of PPS. The articles are fine and medical science should continue to seek an explanation for PPS. However, my clinical observation in many settings is that PPS is usually obvious when compared to others of the same age who did not have polio. Most of our peers are walking and not rolling, breathing without assistance, not dealing with various levels of fatigue and are in no obvious pain. When so many people who had polio over a half a century ago are now living with PPS, I do not need the Mayo Clinic or the Center for Disease Control to convince me of the reality of PPS.
I have been a member of the Central Virginia Post-Polio Support Group for almost sixteen years. Every month when I meet with these seasoned polio survivors I feel like I am at a class reunion. We have some events of personal history in common and we are now connected because of PPS. I have learned more from these people about PPS and life than I have learned from any classroom course. The advantages of sharing experiences and seeking solutions are difficult to measure. I hope all readers are able to participate in Post-Polio support groups. The experience is often uplifting.
I have been blessed by many people and have been encouraged at important and critical times in my life. In the past I walked and climbed many hills and now I roll up some of those same hills. I was in the Polio Class of 1950 and what an education a life with polio has provided. I feel as if I have earned a second doctorate, the one mentioned above, a Ph.P.D. This second doctorate enables me to look back with a philosophic mind. The poet William Wordsworth said it better with these words:
Then, sing ye Birds, sing, sing a joyous song!
And let the young Lambs bound
As to the tabor's sound!
We in thought will join your throng,
Ye that pipe and ye that play,
Ye that through your hearts to day
Feel the gladness of the May!
What though the radiance which was once so bright
Be now for ever taken from my sight,
Though nothing can bring back the hour
Of splendour in the grass, of glory in the flower;
We will grieve not, rather find
Strength in what remains behind,
In the primal sympathy
Which having been must ever be,
In the soothing thoughts that spring
Out of human suffering,
In the faith that looks through death,
In years that bring the philosophic mind.*
*from William Wordsworth’s Ode to Intimations of Immortality from Recollections of Early Childhood
Dr. Henry Holland, Central VA Post-Polio Support Group newsletter "Polio Deja View”, June-July 200. For more of Dr. Holland's articles, click here.
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On keeping an open mind:
“I like to see things as an amateur. The word amateur is literally ‘lover,’ it’s from amore. Professionalism is often the death of intellectual inquiry.”
Robert Proctor – Professor of the History of Science at Stanford University. Latest book, “Agnotology: The Making & Unmaking of Ignorance. Click for more on Professor Proctor.
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Pyramid of the Sun
July 2007—by Yolanda Ceseña
For years many of us have had to learn to “Conserve to Preserve,” as we discover new and unwanted limitations in our progression through PPS along with aging. Activities we once took for granted often become a dread, requiring calculated effort and energy.
For me, it’s hoping that the next step does come as I walk, that my spine will still hold up my head, that my hands won’t fail me again, and most of all, that I don’t endure the torture of an unfulfilled swallow or breath. We’re often in a dire state of being, which is never fully understood or recognized by anyone except fellow PPS’ers.
When my daughter asked my husband and I to accompany her on a research trip to Mexico City, I didn’t want to go, knowing it would be very difficult to physically keep up with them. I didn’t want to experience the pains that happen when I’ve overdone it again. Yet, how could I decline sharing this experience she was about to undertake? I would always regret it if I didn’t go. It also presented itself to me as the opportunity of a lifetime—an opportunity I didn’t have many years ago when I got my degree in Anthropology. How could I not go?
Over the years I have invented various bracing strategies for myself, but I want to share a particular strategy, a kind of “mind over matter” technique that any of us can employ at any given time, yet we often forget.
On July 24 my husband, daughter and I went to the fields of the great pyramids of Teotihuacan. The area stretched for miles, and when we came to what I thought were the main ruins, I found myself in the midst of half-uncovered mounds of earth. There was one pyramid I thought I could climb. Walking to it was a task, but I got there and took a few steps up. The steps were built very steep and narrow, and the climb was made more difficult because there were no handrails to pull myself up and climbing required the big muscles.
I managed to reach a significant height, navigating every step very carefully, and not looking beyond the next step. When I did look up and around in the distance, there it was—the Pyramid of the Sun, and truly one of the wonders of the world. It was a sight most people only read about, and I was there to see it for myself in real life.
That it was built 5,000 years ago seemed impossible, and even more impossible to climb, especially for a PPS.
We made our way at my pace. The weather was hot, and a slight breeze carried the sounds of the different vendors and the music of Aztec flutes. Eddie and my daughter posed for pictures at the base of the great pyramid as they prepared to ascend to its peak. As I stood and watched my family begin their climb up, I noticed that this site did have handrails, and even older people and their children were going up. I took a few steps up, using the handrails, every step becoming harder to perform. As the sounds of the Aztec flutes became fainter in the distance, my breathing got louder. Not looking up, and pushing every part of me to climb, I couldn’t stop.
I don’t remember at what point all kinds of pain set in, but now was not the time to consider it. I was there, and had to make this climb. It had become a matter of doing it for myself while I still could, and then a step for those who couldn’t do it for themselves any more.
I thought of my mother with Parkinson’s, and I took a step for her. Then of my father with knee replacements after years of arthritis pain, and took a step for him; of my mother-in-law, who is in a nursing home and will probably never leave there, and I took a step for her. I took a step for Dale undergoing cancer treatment. One for Judy and all that she does. One for Rick—I knew he would understand. I took steps for Betty & Betty, Sue, Regina, and another for Dale. At that point I hurt all over, and couldn’t remember names any more, but just kept going, taking steps for all of us, carefully laboring up.
Eddie and Yolanda photo by photo by María Teresa Ceseña
The last five feet had to be scaled like rock-climbing to reach the peak. There was no way I could have done that, but I had done it! I climbed Teotihuacan! It was the feat of a lifetime as I walked around the highest tier of the pyramid in full view of the magnificent ancient valley below.
Every day we learn more about our limitations, but also every day we should do what we still can do—one way or another. Had anyone said to me, “One day you’re going to climb a pyramid,” I would have said, “No Way!” When getting out of bed is the major task of the day, there are better days when we might accomplish who-knows-what while we still can.
[Yolanda, a long-time member of the Riverside, California PPS group, must be all of five foot three. It’s hard to imaging her climbing that pyramid.
If she can do that … ]
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There is no limit to the human Spirit.
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MEETING REPORTS
Working Together
A new spirit of cooperation has been born between the original San Diego PPS Support Group and the Escondido (North San Diego County) PPS Support Group.
Rick Kneeshaw recently added the “North County” section to his San Diego Polio Survivors web site. Web surfers can now view the years calendar of events and related information for the coming year.
Go to: http://polio.home.mindspring.com/id27.html
November 8, 2008, Meeting
Note Taker: Gladys Swensrud
The guest speaker for this month’s meeting was Urban Miyares, co-founder of Challenged America, the pioneer/founding organization of adaptive sailing in America, which is home-based in San Diego, CA. Urban was charming, entertaining and informative; in fact this note taker was so absorbed in his presentation that she almost forgot to take notes (smile)! That was high praise, indeed, for his excellent, communication skills!
Urban Miyares, who is blind, would be considered an extreme sports enthusiast. He not only is the only totally blind sailing instructor in the world, but he is also a snow skier who holds the world record for the fastest downhill by a totally blind skier (63 miles per hour), clocked in the early 1990s at Alpine Meadows in Lake Tahoe and again at Calgary, Canada. He is quite an amazing man, who impressed everyone in attendance with his strength of character and strong will to succeed.
As Urban explained, Challenged America was established by disabled veterans in 1978 as a therapeutic sailing program to allow disabled people of all ages a chance to build self confidence and learn new skills. In the case of kids with disabilities, they are paired with like-disabled mentors so they can see how it is possible to successfully sail in spite of their physical limitations; it also gives youngsters a chance to experience the freedom of independent exercise. He added that a parent accompanies children under 18 on each trip.
Seniors of all ages are welcome to participate as well. There seems to be no boundaries for the people Challenged America helps; even those under hospice care are invited to join in the fun.
Challenged America is involved in all aspects of disabled sailing support. They teach both recreational therapists and sports therapists. And they constantly strive to improve equipment through research and development. Urban brought along and demonstrated a special seat they have been working on to help make sitting in a boat and sailing easier for those with different types of sitting impairment issues. He detailed how adaptations have been created for “sip and puff” equipment for those who cannot use their arms or legs, such as participants with ALS. He also said they have developed joy-stick technology for someone who has only the use of a single finger to be able to sail on their own. At this time the Challenged America volunteers are working on a fiberoptic device that can be inserted like a mouth appliance and is controlled by the motion of the tongue.
This program is in its 31st year. The funding for Challenged America is basically achieved by donation and volunteer power. They do receive a little help from the Port District, but it is activities like their disabled racing team, which puts them in the news and brings them increased public attention. The racing team was the first disabled racing crew to ever cross the Pacific Ocean. Urban explained that when a disabled crew sits side by side at a starting line with other expert sailing teams from around the world, no one can tell they are disabled. They have trained to perform the job ahead like every other crew, and they are respected for their exceptional talents.
In conclusion, Urban took questions from the audience. He closed by telling us that sailing is both exciting and freeing for all sailors, but it has additional value for those who thought their physical limitations would never allow them access to such an independent experience.
For more information about this publicly funded, educational, adaptive sailing program, call the Challenged America office at 619-594-8805.
___The next San Diego meeting:___
January 10
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Regular meetings 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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November: We had an excellent meeting with Sally Saban registered dietician and nutritionist from Eisenhower Medical Center as our guest presenter. Her presentation was extremely well received and we all learned a great deal. One of the primary things is that post polio people really need to start with a good breakfast that includes protein and that they should spread out the protein during the day. She also recommended 3 meals and 2 snacks as a way to help balance the energy needs.
The CVPPSG met on Dec 12th and viewed the DVD “A Paralyzing Fear” which is an excellent film about polio and its eventual prevention. The film caused a nice discussion about the film and members experiences that were similar to or in some cases far different from the film.
Our next meeting will be on Friday, January 9th. We are arranging to have a speaker from Eisenhower Medical Center who will discuss Balance disorders.
Reporter - Bob Braddy
_____The next meetings:_____
January 9
February 13
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2nd Fridays at 10 AM at Portola Community Center, 45-480 Portola Ave, Palm Desert CA Park in rear. For information, contact Bob & Kathy Braddy at 1(800) 242-4111 or (877) 938-8267 or email rbraddy@dc.rr.com
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The Escondido post polio support group met on Tuesday, December 9th at the Joslyn Senior Center. Our speaker was to be Dr. James Marino; however, he was unable to make it to the meeting at the last minute. We had several new people so we began by introducing ourselves, followed by a discussion time. It is a pleasure to welcome new people to our meetings. Each one of us has a unique perspective to our challenges. I have added several new books to our group library this month so everyone was encouraged to explore the selections and invited to check out a book.
We were fortunate to be joined by Marmaduke Loke of Dynamic Bracing Solutions and also one his clients who is presently using his newest brace which provides an inventive way to provide support while offering the possibility of regenerating some of the atrophied muscle tissue. Tests are currently being done using this new system. Another by product of this new system is a reduction of back pain. Since back pain is often the reason for having to use a wheelchair or crutches, this provides new hope for many patients. The bracing can also be designed for improving several conditions besides PPS.
The process begins with a comprehensive video of the patient’s normal walking gait. This provides a “blueprint” of the support needed to correct the gait and provide the needed support. Each brace is custom designed for each client’s special needs. The brace is very lightweight. The client must be very motivated to adapt to the brace as changing the gait will take time and determination. Because of the extensive designing of the custom brace, the cost is somewhat higher than traditional bracing; however, not as expensive as some of the new nerve stimulation braces. Dynamic Bracing Solutions is working to be covered by health insurance including medicare.
Marmaduke can be contacted at
Dynamic Bracing Solutions, 619-972-3853
MarmadukeLoke@DynamicBracingSolutions.net
Website www.DynamicBracingSolutions.net
For anyone having a challenge finding shoes which will accommodate a brace, Zappos.com offers many styles which include free shipping both ways so you can try several styles and return those that do not work. Specialized fitting is also available at specialty footwear stores such as The Foot Comfort Store where a computerized pressure point machine is available.
Our meeting ended with a question session. We thank Marmaduke for his impromptu presentation. We wished each other a Merry Christmas and Happy Holiday Season.
We have rescheduled Dr. Marino’s presentation, “Living with Post Polio”, for the February 10th meeting. We also hope to have Marmaduke Loke back to continue his presentation.
______The next meeting:______
February 10
____________________________
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.
HAPS Meeting 11/18/08
Rick had a doctor appointment, so Bunny Smith led the November meeting.
Bunny reports: Six people attended including one new member, Betty Hamm. Discussions included memory problems and the upcoming Christmas party.
December 7 Christmas party:
We had a blast. Close to 30 people showed up for good food, a half hour of live music by The Lincoln Street Bluegrass Band, animated conversation, a gift exchange, and all around fun. It was good to see old friends.
At our January meeting we’ll discuss guest speakers for 2009. Ideas, so far, include representatives from Hemet Orthotics, Express CPAP Supply, Breathing Disorder Services, and Ramona Mobility. If you can’t make it to the meeting, write or call with your suggestion.
Have fun … Rick
_____Our next HAPS meetings are:_____
January 20
February 17
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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@roadrunner.com
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Holiday Meeting December 20, 2008
It lifts your spirits to be surrounded by people you love, and at the holiday time amid holiday music and the glittery decorations of the season you just can’t help but feel joy.
Yolanda and Eddie brought their granddaughter Isabella, but Eddie forgot his guitar.
We missed Rick and his fabulous one-man ensemble – but we are so grateful for the many wonderful memories we have of other great get-togethers – the songs, the joy, the shared experiences and emotions, the laughter – the love. That was our music this year.
For PPS business, we had a special performance, which came about after Pauline’s scooter suddenly failed as she tried to enter up our ramp. Bryan rolled her in. Her husband Ted came at the end with a back-up chair. (Back-up as in Plan B, not as in go backwards!) She very ably demonstrated the various ways a person with no leg muscles to speak of can transfer from one chair to another. First, have Ted stand in front of you and brace your feet with his while he grasps your hands to help you rock forward. Next, notice how your feet keep careening Ted’s shoe that you are trying to brace yourself against. Have Ted stand differently while you seek a combination that will work. (It didn’t help that this was on hardwood flooring.) Finally, since all this fails, gently drop to the floor like this (picture Raggedy Ann doll), and have Ted pick you up off the floor and set you in the chair. I’m sure it is not as easy as it looks, especially the Raggedy Ann part. We saw Pauline going down, but was there a thud? A bump? No, soft as a rag doll, gentle as a feather, and all with humor and grace.
What makes helping someone difficult isn’t the physical challenge so much as it is the personality challenge. This was perhaps the best part of Pauline and Ted’s demonstration. Not a trace of impatience, no one was irritated, no one said, “Why didn’t you this?” or “Why did you that?” I suppose if it happens often enough, you learn to take it in stride.
So for those of us whose “stride” is more and more disabled, if we haven’t learned to take that it into stride it’s time to take some time to figure it out. Be patient with yourself and with each other.
____The next Riverside PPSG meeting:____
February 21
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Riverside PPSG Meetings: third Saturday of even # months at 11 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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Our November mtg. was our usual luncheon with some very and diverse group
discussions.
The High Desert PPS Group held their annual Christmas party on Dec 10th. We had
23 members enjoy a potluck lunch and white elephant gift exchange. A rousing good
time was had by all.
The group will be dark for January, but resume the second Wednesday of each month
starting in February.
Reporter – Kay Mears
__________Next meetings:___________
February 11
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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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Denver's Marny Eulberg, MD, will be the featured speaker at Polio Survivors Plus' January 28, 2009 [1:30 to 3:30 PM] meeting. The head of a Denver Clinic, she is also a polio survivor who has experienced a lifetime of using braces. The topic of her presentation is "The Reversal of Disuse Atrophy."
Reporter – Sue Lau
___________Next meeting:____________
January 28
___________________________________
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 or Gene Minder efminder1@cox.net
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Letters 1/09
Dear Rick,
Please continue to send me the PPS Manager. I’ve learned so much about my disease, more than what the doctors know. I also have agoraphobia and it’s hard to get to the support groups.
I’m sorry I can’t [afford to] support the publishing of these papers.
Danielle R.
Dear Danielle,
You are among a great many people who are homebound and unable to reach out. It is on your behalf that others have happily provided for the longevity of the PPS Manager newsletter.
Thanks for being an important part of the chain.
Rick
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Responses to the August Newsletter “Dear Doctor” article:
Good news letter. Some of these Dr's should be sent back to school. Bad doctors are in the majority.
Take care.
Art S.
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Betty recommends her doctors
In Escondido: Dr. Bradley Chesler...Pain management specialist. Very busy, a great guy and an innovator.
Dr. John Lilly, GP specializing in Neurology. He is a good listener and believes PPS is real and hurts!
In Vista: Dr. Brian Blalock, oral surgeon. He listens, reads material I give him, listens to my special needs, checks up on me after surgery to be sure all is well, believes PPS is real and he can make dental surgery much easier for us.
In Oceanside: Drs. Monahan and Jessip (Mission Family Dental Group) General dentists. Very interested in all info I give them, follow my information immediately, refer me to PPS friendly specialists, have a fantastic staff who have PPS family members, so they understand I know what is best for me in many situations and follow my directions.
Betty G.
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Hi Rick
Just a note to let you know how very much I appreciate and love to read the PPS manager. I keep every copy and refer to them often. Can't thank you enough. Have sent you a check to help with whatever and thank you, thank you!!!!! You do a great job!!!!
I have been using a walker for several years and am finding that now my upper arms are hurting after walking just a short distance - - any of your readers having this problem??? Any advice?????
Dorothy V.
Hi Dorothy,
It’s not unusual for us to wear out our arms trying to make them into legs by using canes, crutches, and walkers. The best solution is to get a scooter or a power chair. Your doctor can help you get one through your insurance - HMO or Medicare. You may have seen the Scooter Store commercials on TV. Your local scooter sales store is also happy to advise you.
You’d be surprised how much energy you save when you’re on wheels - energy to think and do things.
Rick
Note: There are a lot of very important things you do with your hands that can’t be done with your feet. Good advice: Don’t waste your arms doing the work of your legs.
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Hi Rick,
[Even though I am able to receive the newsletter via the Internet,] please keep me on the mailing list. I actually like to get it so I can pass it or some of the articles to people who aren't sure if they are in PPS or not.
Thanks a million for the newsletter and all the wonderful information
you [present to] us. Trust me that we all understand your need to cut back and give your body some quality time. Aren't the golden years a delight?
Tale care,
Kay
Hi Kay,
Yes, the golden years have been pretty good considering … I do more good with the few hours a week I can muster than I did back when I had my nose to the grindstone 50 hours a week. I thought I was helping people by providing jobs … Now I feel ten times the appreciation from one of “our” folks that I ever did from any single employee.
It’s all about quality time.
Rick.
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Hey Rick,
I love the online newsletter. No need to send me a hard copy any longer. Let's save a tree, or at least a twig!!
Thanks,
Steve G.
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Rick I was so excited about 'winning' when I got the BiPap ST from the VA. After only using it a few times, I stopped. It 's so different (the breathing style) than my plain BiPap. The breath in is okay but the exhale seems too fast, more of a quick blow out. I find it disconcerting. I'm not rushed to take another breath but it feels 'off balanced'. Lifecare Solutions has tried to help. They asked me to send back the card and said that maybe they can 'tweak' it a little. (Don't know how they can tweak the machine thru the card, but...) Any suggestions? Is this normal to the ST? I also notice that when it ramps up to full level, the force causes the air to blow (okay, maybe only leak) out around my mask (I have the full face mask). I guess part of the problem is that I have the 'dents' on the bridge of my nose from glasses. Kelly suggested starting the machine without the ramp while to fit the mask but I feel like I'm sticking my head out a car window moving about 70 m/hr.
I'm sure (or so you've experienced) I will feel better if I conquer this aversion to the machine. So..... will it get easier, will I get used to air blowing up my nose, is the ST supposed to 'exhale' different??? Do I need to 'suck it up' and quit whining?
Side note: I so enjoy the PPS Mgr. I read and re-read it and often print out parts that I want to share with family, friends or a doctor. I must have 15+ of the original hard copies around my room. One never knows when an article might be needed. Of course, there are always the archives.
Sandi
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Hi Sandi,
The ST should work perfectly for you. It’s just a matter of getting the settings right.
If you tell me the settings on your ST, maybe I can make specific suggestions.
Also, if you look back two PPS Manager issues from last year called “Getting to Know Your Bilevel” you may get a better understanding of how it works. Sometimes it takes a little experience with the machine – some time feeling it and thinking about it – to understand what’s going on. You should know that every nuance of the machine is adjustable.
Or, show the articles to your doctor/technician and it might help them understand. Most of them don’t deal with ST often enough to know what to do. I’ll be happy to talk to them if they’re willing.
The [memory] card is just a record of how you’re doing. It records leaks, minute volume, and other critical data. However, your personal input is still the most important information they can have, so don’t let them try to convince you to “make your foot fit the shoe.” Bileval ST therapy can and should be comfortable and effective.
Rick
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Hi Rick,
Just wanted to let you know that it is so convenient having the pps manager online. I'm getting calls from the articles that I have been putting in the newspaper about our San Diego North County Group and it is such a great way to give a way for the new people to get instant information about post polio and what is going on in all of the groups. Thanks for all that you do.
Marilyn L
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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@roadrunner.com
Information contained in this newsletter
is not intended to be a substitute for professional medical care.