March/April Issue
In this Issue:
A Brief History
Giving Up
The Chinaberry Tree
Polio on PBS
Kaiser Neuromuscular Respiratory Program Update
A Crooked Road
PPS Manager web site Updated
Dear Brother
Letters and much more…
Meeting reports:
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FROM THE EDITOR
Hi Fellow PPS Manager,
I can’t help but notice the lengthening of the days - a sure sign of warmer days to come. In spite of the faltering economy, there is hope :-)
April 2009 marks the tenth birthday of the PPS Manager newsletter. To celebrate, I went through old files to find all the past newsletters and reformat them to be readable in Adobe (pdf) and Microsoft Word, then made them available on the www.ppsmanager.com site. (Years 2006 to present are currently available as web pages (html). Future plans include all issues in html format with a search engine.) Read more on that in “ The PPS Manager … History” and “PPSManager.com Update.”
In this issue, and possibly for the rest of the year it may be fun to reprint articles from the past with updates as to what has changed (if anything) in the ensuing ten years. So, we’ll start with a ten year old story and go from there.
Also, don’t overlook the latest good news from Gladys Swensrud plus some very interesting meeting reports and letters.
SPECIAL - ONLINE ONLY
Listen to and original song by Rick Van Der Linden written especially for PPS people.
Click here to hear "Tomorrow's Promise."
Have fun .... Rick
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The Southern California
PPS Manager Newsletter:
A Brief History
By Rick Van Der Linden
In 1994, after being diagnosed with PPS, I searched for information. There were no support groups in the Inland Empire, but I did find one in Orange County. Two support group meetings, their fine newsletter, and the power of the new World Wide Web got me started on my quest for information. Later visits to the PPS Clinic at Rancho Los Amigos added to my knowledge base.
By 1998, I was so weakened by PPS symptoms, travel was difficult, so I decided to take the little I had learned and start my own support group in my hometown of Hemet, California. I’d located about 30 folks (now over 100) in the Hemet area and started writing a letter every other month to remind them of the upcoming meeting. I called it the HAPS Newsletter until April of 1999 when it became The PPS Manager.
The Easter Seals organization gave me a list of polio survivors and my list expanded to include Riverside and San Bernardino. Since that was too far for people to drive, I started a group in Riverside and later one in Palm Springs.
Judy Sander, Mary Clare Schlesinger and I started the San Diego PPSG in May of 1998.
Easter Seals paid for printing and mailing of the newsletter until late 2002. Since then, reader donations have paid for printing and the web site, and the Postal Service has paid postage for the “blind or handicapped.”
The current mailing list is over 500 by mail and hundreds via e-mail.
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By Rick Van Der Linden
[Originally published in the PPS Manager Newsletter April 1999]
Did you ever ask yourself: When will I be disabled enough to quit work and start collecting SSI? If I quit work and get healthier does that mean I’m no longer disabled and shouldn’t be collecting disability? Will getting a disability check make me feel like a welfare case? And even worse: “Once I give up on my job what will I give up on next... my family, my life?”
I asked myself these questions over and over during a two-year downhill slide before I finally “gave up” and applied for disability benefits.
It's hard to believe, but I got my life back when I gave up on work. I was surprised that it actually felt good to be able to “bring home the bacon” without killing myself. I proved to myself that quality is more important than quantity and that learning to ask for help improved the quality of my life.
It’s emotionally difficult to accept being disabled, but it was even harder to get the message across to our civil servants. There I was trying to deny my own disability while trying to prove its existence to them.
Once I got through the personal issues, here’s what I learned about getting through the system:
Keep trying.
It's a long and complicated process, so be patient. Before you can receive Social Security Disability (SSD) you must have received State Disability (SDI) for nine months, so you should apply for SSD as soon as you have been approved for SDI. It's not uncommon to have your application rejected, so be prepared to appeal. You can get a booklet at the SS office that explains all the steps.
Documentation is important. The more the merrier. I gave them proof in writing... and a lot of it. I proved that:
1) PPS exists. Reports defining the current professional understanding of
PPS from various sources on the Internet and from major medical publications.
2) I had polio - since records were not available I got a signed statement from my mother. (Yea, a letter from my mom.)
3) I got better - Social Security and business records proved my achievements during the good phase of my life.
4) I had new weakness and pain without another obvious cause - Reports from every doctor I’d seen for two years including primary physician, and PPS savvy doctors. Also, my personal log showing a steady decline in spite of continued job duty changes to accommodate weakness. Further evidence could be found in my SSI records as my income declined.
It took two months to put the thick package together but it worked. I should also add that I had a backup plan. A lawyer. There are strict laws regulating the industry, so it’s not expensive or difficult to get professional help if you should need it.
[In 2003, thanks to the efforts of Dr Richard Bruno, SSI made changes in the POMs (disease descriptions) which made it easier for polio survivors to get benefits - ed.]
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There’s an old chinaberry tree growing in the yard.
It’s never gonna look like much, but it’s trying real hard.
Once it made a decent shade, not many years ago,
But now it’s cracked by autumn winds and broke by winter snow.
And yet this spring new life sprung up from the battered post,
And it shades a little piece of grass and gives me thoughts of hope.
There’s an old man sitting in the shade, resting in the yard.
He’s never gonna look like much, but he’s trying real hard.
RE VAN DER LINDEN 8/’95 [Originally published 1/98 HAPS Newsletter]
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“The Polio Crusade” aired on PBS’s The American Experience program left polio survivors disappointed as PPS was left out completely. Gladys Swensrud commented, “They missed a great opportunity to do something important.”
The program did, however, do a very good job of paying “tribute to a time when Americans banded together to conquer a terrible disease.”
Based on the book, “Polio” by David Oshinski, The Polio Crusade used old film, photos, narration and interviews to illustrate the galvanizing effect the fight against polio had on Americans in the early to mid 1950s.
From President Franklin D. Roosevelt’s battle with polio in 1921 through the battle between Doctors Salk and Sabin over whose vaccine was the best, to the eventual declaration of polio’s defeat, this documentary transports the viewer to a bygone era when Americans were willing to plunge forward in the face of fear.
For polio survivors the images of crippled children, white coats, hospital wards, and iron lungs may be a bit uncomfortable. For the average American it’s an illustration of how safe our world has become and how tough we may have to become to face the future.
For more information, read “Polio: an American Story” by David Oshinski available at bookstores and through online booksellers or visit: http://www.pbs.org/wgbh/americanexperience/polio/ to view the American Experience presentation. Books and videos may be on loan from your local PPS support group.
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[The following article originally ran in the PPS Manager in May 2007.]
Kaiser/San Diego’s Neuromuscular Respiratory Program
By Gladys Swensrud
For over a year, Kaiser/San Diego has been in the process of piloting a neuromuscular respiratory program totally unique to the Kaiser healthcare system. The trial period for San Diego included patients with respiratory weakness related to the following diseases: Post Polio Syndrome, Amyotrophic Lateral Sclerosis, Muscular Dystrophy, and Multiple Sclerosis. During this initial assessment phase, the program opened to also include patients with other neurologic diseases found to have a respiratory component, such as Myasthenia Gravis.
With meticulous planning, documentation and attention to detail, Kaiser/San Diego followed their prescribed treatment algorithm as each new patient was identified, tested and placed on a bi-level treatment protocol specific to their individual needs. And within one short year, proof of this pilot’s success has been the complete integration of Kaiser/San Diego’s Neuromuscular Respiratory Program into the departments of neurology and pulmonary care.
If you are a San Diego Kaiser, PPS patient with respiratory concerns, please contact your pulmonary care physician or neurologist for more information about this valuable program. If you are not yet linked to neurology or pulmonary care, you may call your primary care physician today for a referral to Neurology’s Sleep Clinic to initiate the testing process.
For other Kaiser patients throughout the state and nation, feel free to contact me for information about our program at the following email address: swensrud@pacbell.net and/or telephone number: 858-271-9288. I would be happy to share how our program evolved and how you can request similar services in your local area.
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Important Update…Important Update…Important Update
Kaiser/San Diego’s Neuromuscular Respiratory Program is Being Expanded!
February 2009 GREAT NEWS FOR THE SOUTHERN CALIFORNIA AREA! Kaiser/San Diego’s successful Neuromuscular Respiratory Program has been approved for expansion throughout Kaiser’s Southern California Region. The expansion area will include the following counties: San Diego, Los Angeles, Orange, Riverside, San Bernardino, San Fernando Valley, San Gabriel Valley, Inland Empire and Ventura. Be sure to watch for specific details in future issues of the PPS Manager as the program unfolds!
Thanks and congratulations, Kaiser Permanente!
[Note from the editor: Gladys Swensrud worked for over three years to establish the KNRP program in San Diego. She’s been watching over the progress to make sure it’s done right and no one slips through the cracks. Now she’s pushed for its spread throughout Southern California and, who knows, maybe all of Kaiser. On behalf of polio survivors everywhere, thank you Gladys.]
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By Rick Van Der Linden
Question everything.
If there’s one common theme regarding PPS information or treatment options, that’s it: never trust first impressions, don’t place blind faith in a medical practitioner. Always think at least twice before accepting this theory or that cure. Things aren’t always what they seem.
This could very well be true in the case of many forms of medications, holistic “cures”, and treatments for the symptoms of PPS.
It’s so easy to mask the overall problem by treating the symptoms while allowing the disease to continue doing damage. One common example: using pain medication can allow us to wear out our motor neurons and joints when simple management techniques and assistive devices should always be applied first because they produce the same results (reduced pain) without the long term damage. Another: using supplemental oxygen to increase blood levels of O2 while allowing the buildup of CO2 to ravage virtually all the organs.
This “masking” can also be done in subtle ways. I know because I’ve done it myself. For years I found small ways to improve the quality of my life while overlooking the basic problem – hypoventilation, or barely breathing due to muscle weakness.
Partial list of masking products: tobacco (increases awareness), pain medications of all kinds, carbohydrates, alcohol, blood pressure medication, anti-depressants, a variety of herbal and holistic remedies … I’ll bet you can come up with a few yourself. Oh, another is Mestinon. I tried it back in the late 1990’s and it helped with balance and practically eliminated unscheduled right turns. Now that I’m using overnight ventilation I have no need for any of those things.
To Sleep, Perchance to Breathe
I’ve seen scores of people at meetings who show signs of sleep apnea (nodding off during interesting and animated discussions :-) yet denies they have a breathing problem. It could often be the application of the above-mentioned remedies that allows them to believe this is so.
In fact, I remember thinking, “My breathing isn’t a problem. I’m still alive and breathing.” Then the next thing I do is fall asleep at the wheel.
I challenge everyone to re-assess your breathing. Early detection and treatment is key to a long, happy life.
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To celebrate the tenth anniversary of this newsletter, every issue ever printed is now available online at www.ppsmanager.com.
Long-time readers should find it fun to re-view all the happenings since the beginning. People we miss, fun parties, speakers we learned from - it’s all there. Newer members can catch up on stories they’ve missed.
Enjoy!
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[From The HAPS Newsletter 2/99 On learning to deal with polio – again.]
DEAR BROTHER
by Rick Van Der Linden
This Thanksgiving I had the rare opportunity to visit with my three closest brothers and I was amazed to discover that there are still uncomfortable feelings that I can’t separate from the polio experience as illustrated by the following correspondence.
Brother to me: [re: sibling relationships and polio.] ... ain't no use in dwelling in the past and there is nothing to gain by placing blame. No use in analyzing it to death. It's done. You are not the only one dealing with an imperfect history. Just look at the results and problems that others are having to deal with. Deal with the present and do not look for blame. I am not particularly proud of the role I have played in your past but we must put it into the perspective of our youth and the time.
My Response: Sorry that you got the idea that I was laying the blame. What I actually said was that I'm surprised that I don't hold things against my brothers. I agree that we only have control of the present and therefore to some extent the future.
To properly manage PPS I have to reduce stress by changing my thinking and by gaining a better understanding of myself (Why do I try too hard? Why do I freak out around white coats? What motivates me? What brings me down? Why am I always willing to take the blame?). I have to understand what was hard wired into me back then. There is so much that I've put out of my conscious mind but it's still in my subconscious.
For example: While watching a documentary on PBS called "Paralyzing Fear - the Story of Polio in America" I was reminded of many of the things that struck fear into me. Put yourself in this situation: You’re five years old, taken from your family and put alone in a dark room for two weeks, you know you could die, unable to move, might have to be stuck in a big, noisy can and parked in the hallway, nurses threaten if you cry, you're helpless. The scourge that threatens all the healthy children lives in you. Then, weak and facing years of slow recovery to maybe fifty percent of potential strength you're the runt of the litter and picked on by your peers.
I'm not whining about it or blaming anyone (I'm sure that if the shoe was on the other foot I would have been as bad), I'm just saying that I have to face up to these things to be able to purge myself of them and take control of myself. You can ignore all that stuff but I can’t - it's a management issue.
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MEETING REPORTS
January 10, 2009 Meeting
Notes
by: Gladys Swensrud
For anyone who isn’t familiar with the touching story of Carnegie Mellon’s famous professor, Randy Pausch, it is a must see! We found it to be a thought provoking, sensitive account of one man’s journey through life and the legacy he very lovingly left for his family and friends.
Randy Pausch was born on Oct. 23, 1960 and died of pancreatic cancer on July 25, 2008, at the tender age of 47. He gave his last lecture before a packed audience at Carnegie Mellon University on Sept. 18, 2007. And from the perspective of our group, we were captivated from the moment it started until it ended. The discussion that followed was very uplifting; we easily made a connection to how he lived his life with gusto…just as survivors of polio have picked up the pieces remaining after the virus ran its course in each of us, and we, too, have lived life to the fullest extent possible.
To see the video on youtube, click here. Also, Rick Kneeshaw had a copy of the DVD. It is also available for sale through most DVD retail outlets.
___The next San Diego meeting:___
March 14
_______________________________
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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The meeting of the CVPPSG went extremely well. Derek Spinney, Rehabilitation Director at Eisenhower Medical Center presented a talk on Balance disorders. It was very interesting and many people asked questions of this knowledgeable and interesting man.
Bob Braddy announced that his wife Kathleen passed away on 1/6/09 due to complications from medical procedures. He also announced that he is returning to Oregon and will no longer be the coordinator of the group so we need to find a new coordinator.
_____The next meetings:_____
March 13
April 10
____________________________
2nd Fridays at 10 AM at Portola Community Center, 45-480 Portola Ave, Palm Desert CA Park in rear. For information, contact the newsletter
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Reported by Marilyn Loba
We were pleased to have Dr. James Marino as our guest speaker on February 10. Dr. Marino is a well-known orthopedic surgeon who also has post polio. His presentation was “Living With Post Polio”.
Our meeting began at our new 12:30 PM time. We will continue to begin earlier so that we can have a discussion time before our program. We welcomed several new people and were happy to have three of our friends from the San Diego group. Everyone introduced themselves and gave a short history of their post polio experiences. Rick Kneeshaw shared his experience of being involved in the UCSD new physicians program. Second year doctors examine patients to help teach them how to diagnose patient complaints. He was pleased to find that these doctors were familiar with PPS and seemed to be getting instruction about post polio.
Dr. Marino began his presentation by sharing his polio story and explaining how it now affects his practice.
He explained how the improvement in hygiene had prevented natural protection against polio that led to the massive spread of polio. In 1955, Dr. Salk used the first polio vaccine nationwide.
Polio did not seem to affect all muscles. Muscle function loss depends on how many nerves were affected. However, a muscle could lose 60% of nerve support and still feel normal. A non-atrophied muscle could appear hypertrophied (grow abnormally large) or appear normal due to sprouting (nerve sends new branches to the muscle groups). Although function appears normal, the muscle group is not controlled in a normal manner. Therefore, some limbs may become atrophied and other limbs are seemingly unaffected or become “super” muscles. However, these muscles have also been affected by the poliovirus.
After many years of functioning, new muscles begin to lose strength. When post polio syndrome began to be widely reported in the late 70’s and early 80’s, it was thought that about 20-30% of polio survivors would be affected. Now it seems that most will be affected in some ways. After the age of 30, males may lose 1% of muscle function per year. Post polio patients lose muscle function at an accelerated rate.
In post polio, after a period of 10-20 years, there will be continued weakness and declining muscle function. Some of the clinical symptoms that can be identified with post polio include fatigue, loss of activity function, intolerance to cold, and new pain. Stairs may become a great challenge. At this point, it is advised to conserve neuromuscular function.
Post polio is not caused by a lack of muscle use so exercising the affected muscle groups is a bad idea. Our nerve connections are wearing out after being overused for decades. These nerves lack the necessary ordinals to release acetylcholine that activates the muscle. When nerves are doing 8 or more times their work, they start to break down. The nerves begin to misfire which causes a loss of muscle control.
We should be cautious about exercising any affected limbs. Use them for vital functional purposes and pleasure. Avoid chores that are not necessary or get help. Use devices whenever needed. Maintaining cardio health can be done with unaffected muscles if possible. Vary any exercise routine. We need an appropriate diet for cholesterol and sugar control. We also use fewer calories due to our weakness so it is very easy to gain weight, causing an additional burden on our already overused muscles. If we over fatigue our affected muscle groups, it takes longer to recover. If it takes more than one day for the muscle recovery, then that group should not be over exercised. However, if the muscles recover quickly, some exercise is appropriate.
Most people get enough vitamins in a balanced diet so supplements are usually unnecessary. Check with your physician. To avoid weight gain, calories absorbed must be burned with muscle or metabolic function so we have to be careful about our calorie intake.
PPS people use willpower to achieve more than expected. We have learned to be resourceful to function.
Most adaptive equipment is aimed at the lower extremities. For help with weakness in the upper extremities, counter balance adaptive equipment may be used to help with function. Use any adaptive equipment that can help to conserve the affected muscle groups. Don’t do anything that can be done by someone else. Have a housekeeper to do any heavy work and/or gardener for landscaping if possible.
PPS is an orphan disease. We are a limited number and a dying group. Therefore, we should not count on research to supply answers. However, research for other nerve disorders could possibly be helpful.
There is no test that can diagnose post polio. We need to look to our physicians for optimal care. It may be difficult to find doctors who are familiar with post polio. Try looking for doctors in physical medicine or a physiatrist. Rancho Los Amigos may be helpful for diagnosis and/or care. Many times brain lesions are found in autopsy confirming the presence of post polio, however there is no way to find these before death.
If post polio is indicated, extra care must be taken for any surgeries. Muscle relaxants should not be used in anesthetics. Make sure that the anesthesiologist monitors the surgery closely. Recovery may also be slower.
We would like to thank Dr. Marino for his excellent presentation. It is rare for us to find a doctor with his insight and expertise.
For our April 14th meeting, we are pleased to have Marmaduke Loke of Dynamic Bracing Solutions as our speaker. Marmaduke has invented a bracing system shown to improve muscle function. He will also be a speaker at the Post Polio Conference at Warm Springs Georgia in April.
______The next meeting:______
April 14
____________________________
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.
The January meeting was interesting. Our guest speaker was polio survivor Nancy Gaier. Accompanied by her husband, Stephen, Nancy told us about her successful treatment of charley horses in her legs and other maladies using Ningxia Red (wolfberry) fruit juice and Essential Oils. She attributes years of controlling PPS symptoms to the use of these ancient remedies. In the course of her presentation, Nancy sited many testimonials to the product’s effectiveness in treating every imaginable human ailment. Samples were passed around the room as members were given the opportunity to test the oils. A few reported a feeling of peace and relaxation after applying the oil intended to produce that effect.
Nancy and Stephen fielded tough questions and outright skepticism with calm assurance. For more information, contact Nancy at (951) 676-9424 or ngaier68@hotmail.com
We also discussed future speakers including Hemet Orthotics, Ramona Mobility, a dietician, and a naturopath. Should be an exciting year.
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A few new members brought renewed energy to the February meeting. It was a lot of fun. Bill brought his well-behaved Miniature Schnauzer, Abbie. Bunny couldn’t make it because she was having trouble breathing. She attributes the problem to the unusually wet weather we’ve been having.
Have fun … Rick
Our heartfelt sympathy goes out to HAPS member Mary Dahlstrom on the loss of her husband Bob.
_____Our next HAPS meetings are:_____
March 17
April 21
____________________________________
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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Reported by Judy Mahoney
February 21, 2009
New member Maria shared that she had polio at age 2-1/2, but wasn’t treated at the time because her family did not understand it was important. As a teenager she began receiving attention for it, and was fitted with a leg brace. When it was determined that the leg brace was not sufficient to correct her dragging leg problem, she had surgery.
After this she was fitted for a lift in her shoe, but for quite a while she was reluctant to wear this, concerned people would view her as handicapped, as if her continuing “polio gait” didn’t give that away already! Such are our perceived notions. Not wearing the lift caused other problems, however, and Maria finally relented and began to use it.
We talked about the hurdles we must all face. Everyone has some inability, with or without polio, and we find ways to cope. But using an outwardly visible aid draws attention to us, and places us in danger of being stereotyped, even by ourselves. This is where we have to take stock – armed with information and sound logic – and take a hard look at the realities of social acceptance vs. prolonging our mobility. It isn’t always a cut-and-dried thing, and the first battlefield is our emotions.
Our discussion also centered around Yolanda Ceseña’s courageous climb up pyramid Teotihuacan. Others shared their adventures as well, and we happily agreed that sometimes you just have to go for the adventure if you are going to really live your life. It doesn’t mean you don’t use discretion in the day-to-day, but doing that allows you to “splurge” when the occasion calls for it. And maybe a little “splurging” on a regular basis is what keeps the spark going in us.
Without that splurging, Betty wouldn’t have enjoyed seeing her grandson take in the wonder of Carlsbad Caverns for the first time. She fell half-way down the descent into the cave, but kept going (inching backwards). Call it “opportunity cost” – spending for one thing means you can’t spend it somewhere else. She could have “purchased” safety, comfort, “conserving to preserve,” but instead she bought a fabulous memory and made a significant investment in her grandson.
And Mary B splurged taking a train trip to Wisconsin, fraught with amazing adventure – but that is for another report.
We were glad to welcome back Grace to our meeting, and missed some of our regulars who either had to work or were ill. Get well soon everyone.
Our annual Barbecue is planned for August 15.
____The next Riverside PPSG meetings:____
April 18
June 20
______________________________________
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
---
No Report
__________Next meetings:___________
March 11
April 8
___________________________________
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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No report filed
___________Next meeting:____________
Call or write for information
___________________________________
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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Hi Rick,
Just a fast note to thank you, your sister and Sandy for all the work you do to bring us the PPS Manager on a regular basis. You know I realize and appreciate the effort that takes. And a special thanks to you, Judy Mahoney, Kay Mears, and now Marilyn Loba for the month after month of faithful meeting reports you all submit. None of you ever miss a beat! It isn’t enough for survivors to just know what is happening within our own areas; polio survivors have a need to know what other groups are doing in the name of educating their members as well! We stand to learn a tremendous amount from one another. You, and they, each do a wonderful service by keeping PPS groups throughout Southern CA informed through the PPS Manager. Last year traveling within the state of California, talking about Kaiser/San Diego’s Neuromuscular Respiratory Program, taught me how crucial it is to discuss the common problems with which we are faced. Sometimes, as you and I have learned, the medical profession can only help us as much as we help ourselves.
Also, I wanted to respond to that note from Sandi in the last newsletter asking questions about accepting her bi-level, but you said it all in return. Your bi-level is only as good as the user and the therapist together are as a team to get the settings right. I remember what it was like trying to use the Bi-PAP (S/T) I was first prescribed with the wrong settings. It was a nightmare. If I had to struggle like that with my machine every night, I’d just quite using mine too, which would be disastrous. If everyone could only get the straight talk that Doc L gave me about how likely I was to eventually die if I needed night/nap time ventilatory support and refused to use it, I think more people would try harder to get their setting correct without moaning. I whined for two months, got the Doc L chat…and then I quickly learned how to use and accept breathing assistance. Had you and I not accepted our respiratory weakness, we’d be 10’ under by now. At least I KNOW I would be!!!
And as you know first hand, I want to really understand my nightly readings. If my Self Initiated Breaths (SIB) rate is low…I want to know exactly how low so I can link it to what I did that day. By knowing what is causing the dips, I have learned I can still participate in some of the taboo things in moderation. Knowing my exact numbers gives me greater freedom to indulge in some of my most enjoyed daytime activities without overdoing. I like max control over what I do with max muscle results at night. Naturally I sometimes throw caution to the wind, but judging muscle use and preventing overdoing is what will keep me functioning at a higher rate for a longer period of time. I have learned my nighttime respiration is my window to my muscle health!
Like all your other readers, I love getting each issue of the PPS Manager. Sure glad you are still engaged with the process and producing it! With thanks,
Gladys
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Rick
I can't wait to pick up my hardcopy from my POB, so I am writing you as my printer cranks out 25 pages of the first 2009 issue! I can usually wait to pick up the hard copy to read several times before I pass it on. But, I must have needed the wisdom's of this issue now and my body isn't cooperating with a sit at screen and read session!
I still like receiving the hard copy as I try to hand it off to someone that has not been made aware of the PPS manager and all the local support groups and information available.
You certainly brighten the spirit of the others!
Thanks, Barbara Hall
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Hello Rick,
I an interested in information about the memory problems you discussed at you 12/7/08 meeting.
Thank you, Sandra
Hi Sandra,
I was diagnosed with PPS fifteen years ago, though I can trace symptoms back twenty-five years or more. Most of the symptoms have been physical such as: pain in my neck and hands and arms, legs burned during intense exercise, competitive cycling limited by my breathing, and generally feeling older than my years. It took a long time, however, to connect mental fatigue with PPS and longer to find the mechanism causing it.
Sometimes referred to as brain fog, the mental fatigue (Central fatigue) associated with PPS includes: difficulty concentrating, irritability, inability to make a trustworthy decision, reduced ability to make memories (short term memory failure), word finding problems, etc. Basically, the brain can go to sleep while you’re awake.
People with this problem often think they may be getting Alzheimer’s Disease, or that they are becoming senile.
Brain fog can be the result of extended physical fatigue and/or chronic pain. When energy is running low, or pain is running high, the body’s survival system kicks in. Staying alive is the first priority. The brain stem, where basic animal functions are controlled, and the heart, are first priority. Under stress, the body shuts down functions not directly needed to stay alive until danger passes. Some organs may shut down, digestive functions can go either way, and so on. The parts of the brain responsible for memory, emotion, and higher thinking can be shut down diverting energy to survival functions only.
Best treatment is rest. Do less. Learn to love nap time. Use mobility aids. Rest your brain by not falling prey to stress/anxiety.
The brain needs food. Good mental function requires good health in the rest of the body, so diet is also important. There are many supplements aimed at improving brain function, but too much can be harmful, so beware of overworking liver and kidneys.
The brain needs oxygen. Hypoventilation (Barely Breathing) is an insidious condition experienced by an estimated fifty percent of polio survivors. When breathing (in with the good, out with the bad) is painful or fatiguing year after year, the brain gets used to running on less of the good - O2. At the same time, CO2 (the bad) builds up in the blood. When the lungs fail to remove CO2, it’s stored anywhere the body can find to store it. Problems arise wherever CO2 is overwhelming normal function: in the muscles, burning and weakness – in the organs, slow deterioration – in the heart, high blood pressure and muscle damage - in the brain, higher functions are the first to go.
When inadequate blood gas transfer in the lungs becomes a problem it may be due to bad lung health (emphysema, asthma, COPD), obstructive sleep apnea, damage to the brain stem, weak breathing muscles, or all of the above. In my case, it’s all of the above.
The cure is to flush out the bad, and replace it with the good. For most people with PPS neuromuscular breathing weakness, the solution is assisted ventilation via Noninvasive Positive Pressure Ventilation (NPPV). Sometimes called a BiPAP ST machine, properly applied NPPV will increase O2 availability to the oxygen starved organs and, over time, flush out the built-up CO2. In my case, NPPV helped return mental function to what it was decades ago. Might even be better than ever! Let me know if you need anything else.
Rick
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Another great newsletter. MANY thanks, Rick...
and a Happy New Year...... may it be a healthy and peaceful one!
Cheers from a very snowy Vancouver! Jennie
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Hi Rick
I recently read that Harvard Univ. researchers are working with mice to cure ALS (a motor nueron disease) and have switched the use of stem cells cure the motor nuerons. They have used this process to take infected mice, injected the switched stem cells, and cured the mice. They anticipate it will take five years before this will be available to humans.
It seems like this could be a stepping stone for PPS researchers. Have you heard of it? Sincerely, Walter
Walter,
Bits of information are flying around on this subject. Hope for PPS is still very far off, so the best bet is still: manage yourself the best you can. If they come up with a “cure” we want to have preserved as much of our bodies as possible.
Rick
[The PPS Manager newsletter welcomes input on the subject – ed]
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Question: Does anyone else have any personal details on Xenograft for torn rotator cuff or personal experience with xenograft? Marion
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Hi Rick, I really enjoy the newsletter, makes me feel less alone.
I have a power lift recliner that I would like to offer to anyone who is interested. I will sell it for $100 or best offer.
Gloria B - gsbond22@att.net
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PPS Manager, I have learned so much from The Newsletter and I make copies for my neighbor who had polio the same time I did – way back in the ‘40s. Thank you so much for all your hard work. Veda N.
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“I’ve always done all I can do. PPS hasn’t changed that.”
RE VanDerLinden
[First published in the 2/99 issue of the HAPS newsletter]
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Reminder:
If you move or change your email address, don’t forget to let us know!
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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. Thanks to Joseph & Marilyn Grande, Roger Woody & Gloria Thatch, Bryan and Judy Mahoney, Julianna & Robert Therrien, Patricia Mansell, and Alvy Cambonga. 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.