SEPTEMBER 2008
In this Issue:
Dear Doctor/Good Doctor/Your Doctor by R.E.Van Der Linden
Vaccinations are Important by R.E. Van Der Linden
Letters and much more…
Meeting reports:
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FROM THE EDITOR
Hi Fellow PPS Manager,
In the previous issue, I called out for support and got it. For six weeks I received several emails and letters every day. As a result, the mailing list is now 10 percent smaller – all switched to email alerts – bringing the email list up and the printing cost below $400.00.
With the July issue sponsored by Rick and Lenora Kneeshaw, this issue sponsored by Zachariah Bruce, the November issue to be sponsored by the San Diego PPS support group, and all the individual donations, we’re looking good for quite a while.
Along with a lot of heartfelt encouragement, one repeated message came through from those PPS Managers who can’t make it to meetings. Your reports, questions, doctor recommendations, and letters are very important, so keep them coming.
In this issue, I’ve included as many letters, suggestions, and requests as possible. Take special note of the “… Doctor” feature. We want to hear from YOU!
Remember: If you haven’t already done so, let me know if you want to stay on the mailing list. (The newsletter is free so don’t feel like you have to send money!)
Have fun .... Rick
--∞∞o∞∞--
DEAR DOCTOR
by Rick Van Der Linden 12/1998
[Note: The following was written nearly 10 years ago after a doctor (whom I later fired) who didn’t believe in the existence of PPS thought my physical problems were all in my head. His approach to treatment was motivational – basically: “Shame on you. Quit being so lazy!”]
Dear doctor:
Thank you for your attempt to help me. I know that your efforts are well intended and I'm sorry we had a misunderstanding and I apologize for getting frustrated and angry. I don't like to leave things unfinished, so please take a moment to allow me to clarify my position.
I am a self-motivated person and a typical type "A" personality. Before post polio I was raised on farm work, completed high school, married (and stayed married for 34 years), raised three sons (an engineer, a nurse and a tradesman), had my own business for twenty two years, became a long distance cyclist, and had a semiprofessional career as a part time musician as well as other hobbies. In short I'm not a quitter and I don't like asking for help.
About ten years ago when the physical and mental weakness of post polio began to creep up on me I fought hard to overcome the weakness by following the advice that was drummed into my young mind and simply tried harder. It took me to a point at which I could barely perform my daily living activities and could barely walk or hold up my head due to pain and fatigue.
After learning about PPS from Dr. Jaquelin Perry of Rancho Los Amigos and many friends on the internet and in support groups I finally reversed my thinking by following Dr. Perry's advice to "Conserve to Preserve" - the opposite of "No pain- no gain". Because of this change of thinking (which I resisted for a year and a half) I learned to use assistive devices, take pills (something I've always resisted) [see note below] and carefully manage diet, stress and activity. This change of thinking allowed me to recover to my present degree of abilities and remain stable for several years.
Yes, I did go through depression when I had to give up most of my dreams, but I believe that what you saw as self-pity and depression in your office was a misdiagnosis. I was extremely stressed and frustrated by your attempt to re-reverse my thinking, which poses a threat to the successful managing of my life with PPS.
Regarding breathing exercises - I sing and play harmonica and Native American flute as often as possible within the limits of not overdoing.
Regarding physical exercise - Besides daily living and light household tasks I stretch in a spa at least every other day to maintain range of motion and muscle tone.
I'm proud of my present condition.
Sincerely, Rick Van Der Linden
[Further notes 8/08: The medications I took were for low thyroid, and a multi-vitamin that I still take. Also, blood pressure meds and several other medications that I took (but no longer take) for conditions that I now believe were caused by excessive CO2 due to PPS breathing problems.]
Good Doctor, Bad Doctor
By R.E. Van Der Linden 8/22/08
So, you’re looking for a new doctor. Should he know about PPS? It would be nice. He should at least believe that PPS exists. If he or she doesn’t know a lot about PPS, compassion and cooperation is the next best thing.
I’ve compiled excerpts from actual conversations with doctors and broken them up into the good, adequate, and terrible with notes on how they made me feel.
Good Doctor
[Early in my PPS experience, after a lifetime of seeing a doctor only for allergies, broken bones, and cuts requiring stitches, I sought out an orthopedic doctor known for his understanding of PPS, Dr. Christopher Flemming in Riverside, CA. onetime understudy of the famous Dr. Jaquline Perry of Rancho Los Amigos.]
Dr: Good morning. How are you feeling today?
Me: Okay. Just a little sore in the neck and shoulders.
Dr: How long have you had this problem?
Me: Off and on for years. Worse lately.
Dr: On a scale of 1to 10, 10 being unbearable, how would you rate the pain?
Me: Well, it’s not 10 because I haven’t blown out my brains yet.
Dr: Pretty bad?
Me: Sometimes.
Dr: Can you describe the pain?
Me: (hesitation) Kind of a burning ache … here and here and here. (I wince as I point out places.) I don’t know.
Dr: (looking at my chart) You say you had polio. Tell me about it.
Me: (I tell him about it while he pokes around, does a few muscles strength tests on my arms and hands, listens to my heart and lungs, etc.)
Dr: Does it hurt less when you get more rest?
Me: It hurts to hold up my head, so I’m always looking for a place to rest my head.
Dr: You probably have Post Polio Syndrome. We can do tests to make sure something else isn’t causing your problems, but if the tests come back negative, the main treatment will be lifestyle change. You’ll have to slow down, learn to manage your time differently, rest when your body tells you, reverse your thinking. You might try taking non-steroidal anti-inflammatory drugs like Advil, but I should warn you that over time your need for them may increase and stronger drugs may be needed. It’s a decision you have to consider very carefully. A soft collar may help hold your head up (he gave me one to take home, and it did help) and there are other assistive devices that might help. A figure 8 to hold your shoulders back (which I still sometimes use) or maybe a back brace (which I later had built and still use from time to time) and over time other assistive devices like a scooter might be needed.
I didn’t like hearing these things. And though I knew he was right, it took a long time to adjust to the information and incorporate it into my life.
[Later, after a few sessions at Rancho Los Amigos, I went on disability, changed insurance, and needed a new doctor. I won’t name this guy.]
Dr: (looking at chart) I see you’re here for a general exam … You say you have Post Polio Syndrome?
Me: Yes.
Dr: What are the symptoms?
Me: I’m tired all the time, my neck and shoulders and arms hurt, I can’t walk very far before I start having … problems. Other stuff. [my brains are kind of muddled.]
Dr: Are you aware that these problems might be caused by something else?
Me: I guess … But I was diagnosed by a doctor who is trained at this stuff, and I went to the PPS clinic in Downey and … (he interrupts)
Dr: Clinics like that will tell you anything. How do you think they make their money? By telling people they’re well?
Me: (I must be an idiot. What can I say?)
Dr: Take your clothes off and we’ll do a complete exam. (Which he does in the most degrading way possible.)
Later, the bad doctor sent me to 3 different specialists, each carefully chosen to degrade me and prove that I didn’t have the non-existent PPS thing. One, an orthopedic doctor tried to get me to do deep knee bends. All I needed was motivation. I told her she was crazy as I stormed (okay, staggered) out of her office hurling profanity at her and her staff. It was a bad day.
Another, a neurologist, tried to do an EMG. He asked which side was my bad side. I told him, and he tested the other side.
After months of testing, I went back to Bad Doctor for the results. Not PPS, just as he suspected. So he sent me for physical therapy.
The Physical Therapist interviewed me:
PT: It says here that you have pain.
Me: Yes.
PT: The doctor thinks we can help you.
Me: The doctor is nuts.
PT: You don’t think we can help you?
Me: No.
PT: Then why did you come here?
Me: Good question. (I leave.)
I’ve had enough of this. I go directly to Bad Doctor and fire him.
My current doctors (multiple insurance situation) are both unfamiliar with the details of PPS, but don’t deny its existence and realize the effect it has on my general health. They respect my knowledge of PPS and neuromuscular breathing issues, and frequently ask what they can do to help me. They understand how sensitive we are to drugs, so they are not quick to prescribe them, though they are easily convinced when I need a new assistive device, or upgrades, supplies, or repairs to current devices.
Whenever I talk about PPS in general, they listen. Both doctors have told me that they have other patients with PPS, and they don’t want to take a chance on doing something wrong for them. They have very little time to study this unusual and seldom seen disease, and welcome the opportunity to learn a little from me at each visit. So, I visit often even though I may not need to, and talk a lot.
The key here is that, if you can’t find a doctor who knows PPS inside and out, you have to know PPS inside and out and find a doctor who is willing to listen. A good doctor will compare your knowledge of yourself and of PPS with your physical condition, test for normal health problems, and prescribe with care.
How can you possibly know enough about PPS? Read everything you can find on the subject, talk to folks at meetings, surf the web. Compare all that information to your situation, and be honest with yourself. Is that me? If it is, fine. Manage it.
How can I find the right doctor? Again, by being honest with yourself. If that little voice inside you is saying, “This isnt’ right.” Listen.
We have a hard time dealing with white coats. They have an unreasonable power over us. But there’s no reason not to replace this doctor with a better one is there? It took six tries for me, and it was worth it.
It’s just another part of being a PPS Manager.
I get calls from people whose doctor is doing them wrong. They desperately need the name of a good doctor. I tell them, “I like my doctor, Dr. Kolli, here in Hemet, CA. He speaks English clearly, he gets my jokes, he respects my intelligence (what there is of it :-), and believes PPS exists. He doesn’t know a lot about PPS, but he’s learning.”
Then I tell them that the best place to get more than one referral is to go to their local support group meeting. The problem is, about 80% of PPS folks can’t make it to meetings. So, maybe we can help each other through this newsletter.
Have you found a good, or a mighty fine doctor? If you have, let us know and we’ll tell everybody about him or her right here in the newsletter. Let us know why you like your doctor. How he or she improves your life by helping you manage PPS.
Send your responses directly to the newsletter and I’ll make sure everybody knows.
--∞∞o∞∞--
Vaccinations are Important
By R.E. Van Der Linden
[I usually stick to subjects related directly to the management of PPS, but two recent stories spurred me to speak up – Rick]
For years, Rotary International has been on a campaign to wipe out polio worldwide. A couple of things have thwarted their progress. One, distrust of Americans, has prevented inoculation in some areas of the world, but the most ridiculous problem is ignorance in this country.
Myths and false rumors about the dangers of vaccinations have prevented otherwise intelligent people from doing the right thing. Laws have been relaxed, and in some cases, people have been known to falsify vaccination records to get around school entrance requirements.
The first problem – distrust – stands in the way of the elimination of the virus. In a world of global travel, that makes future generations vulnerable to a poliovirus that just won’t go away. So, vaccination here at home is that much more important.
Two myths regarding vaccinations have popped up in recent years. One is that they cause the disease they are intended to prevent, and the other is that they cause Autism.
There is some truth to the first claim. In a very small percentage of inoculations given, the disease will take hold. The percentage, however, is very small in comparison to the odds of getting the disease if people are not vaccinated. When in doubt, ask your trusted physician.
The other myth, the connection to Autism, is total bunk. A study was once done to see if such a connection existed, and none was found. Why anyone ever believed otherwise is probably the result of some fool on the Internet. Once again, when in doubt, ask your doctor.
Making the wrong decision can be a big mistake.
The CDC recently reported over 130 cases of measles in the United States. This is a big increase over recent years, and at least half of these cases are linked to un-vaccinated children. Globally, measles kills 250,000 unvaccinated people every year.
Here’s a story I didn’t want to hear. A PPS friend told me about an old classmate who recently contacted her. Her friend has a 22 year-old daughter who went to southern New Mexico to work with the Native Americans on a college project. While there she became ill. Overnight, she became paralyzed with polio and remains so weeks after the infection.
In this modern time of required vaccination, how could she have gotten polio? Her mother, who feared vaccinations, falsified her daughter’s records to get her into school. Now her daughter is paralyzed. We all know what the future holds.
As with managing PPS, preventing polio and other communicable diseases is a matter of getting the right information. I think we are all very much aware of this fact. It shows up every time I ask myself if the advice I just got is right for me, or if I should weigh the evidence a little longer.
There’s a delicate balance between acting quickly and acting with caution, but the trick is to not sit there and do nothing.
--∞∞o∞∞--
MEETING REPORTS
July 12, 2008 Note Taker: Don Baisch
For the twenty-seven in attendance, Rick Kneeshaw began our July meeting with member introductions, each sharing a brief history of how we experienced polio, or what plans each of us might have for the summer.
Rick then updated us on how Lenora was doing with her chemotherapy. He explained that she is holding her own as she faces the last of eight chemo treatments. Rick is encouraged by her progress to date. We extended our love and best to her!
Our guest Speaker this month was Sara H. Fainstein MPH, PhD. Dr. Fainstein has advanced degrees in Clinical Psychology and Public Health. She has been the group facilitator for the Wellness Community-San Diego, and is continuing this line of work through the Caring Community-Living with Cancer and more recently, Sharp Chula Vista Medical Center's Breast Cancer Patient Navigator Program.
Dr. Sara is also a polio survivor, and a breast cancer survivor. She shared her childhood experiences at the Warm Springs facility in Georgia.
Relaxation and Visualization - Techniques for Stress Management
Who suffers from stress? We all do. However most of her patients sufferer from cancer, fibromyalgia, Parkinson's, and post polio.
What is Stress?
It is a physical expression of the mechanism of survival. It is a healthy reaction to perceived immediate danger. It can result from situation that we believe threatens us and leads us to react. It can also be caused by chemical reactions in our bodies that create a negative effect on our physical health or our mental health or both.
How does stress affect us?
A high level of stress seems to create ill effects in our physical and emotional health. It may appear as insomnia, heart disease, headaches, and skin diseases.
What causes stress?
Our current lifestyles conflict with our mores and family training - career may conflict with family life – traffic, money, pressure to improve productivity … Every time we turn around we find ourselves in a new stressful situation. As a result we feel chronic illness/pain/disability.
How is Stress Manifested?
Mentally; causing us to worry, to feel ashamed, to feel rejected, and other depressed feelings.
Physically: with headaches, butterflies in our stomachs, muscles that tense up, sleeping problems, and appetite problems.
Types of stress
1. Acute/intense; prepares us to fight or flight. This usually only lasts for a short time period.
2. Chronic: lasts over a long period of time. It keeps our body in a constant state of alert, which then affects our physical as well as our emotional wellbeing.
How should we deal with stress?
First, see the problem truly as it is. Focus on something to help solve this problem. We must look at what we can change. Also look at what we cannot change. Then start establishing priorities. Discuss this with others to help overcome the feeling of being overwhelmed.
Learn to say "NO"!.
What can we do?
- Establish priorities
- Take breaks during the day
- Exercise
- Take time for ourselves
- Socialize
- Express our needs
- Massage
- Learn to breathe deeply
- Learn relaxation techniques
She recommends the best way to solve these problems is do "Relaxation Exercises"
She conducts free relaxation training sessions at the American Cancer Society Building,
2655 Camino Del Rio North Ste 100 in San Diego. In these sessions the patient learns and experiences the techniques and processes to get stress under control.
The free sessions are each Wednesday 3:30-4:20 PM For more information you can call her at 858-637-3094.
Rick and Lenora Kneeshaw are taking a long awaited trip to grandpa’s house up in the cold country, so Steve Goldman will be leading the September meeting with the ever-popular “What Works for Me” theme.
___The next San Diego meeting:___
SEPTEMBER 13
_______________________________
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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Notice:
Update 9/16/08:
For our October meeting, Lois Jackman has agreed to make a presentation on her visit this summer to see the Post Polio Institute and Dr. Richard Bruno. This should be very interesting.
_____The next meetings:_____
OCTOBER 10
____________________________
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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Reported by Marilyn Loba
June 2008 Meeting Report
Our speaker on Tuesday June 10th was our friend and supporter, Carlos Valenzuela, of Progressive Orthopedics. The topic was new developments in bracing.
The reason for bracing is for stance control. Older braces were made of steel and leather, which were either attached to the shoe or were removable from a hole in the heel so it could be moved from one shoe to another. The next braces were made of aluminum and leather, which were much lighter in weight. Newer braces are made from much lighter materials which are easier to lift and more comfortable to wear.
Balance is most important in successful bracing. Many polio survivors have some form of back knee. If the orthopedist tries to straighten the back knee with the brace, many times the balance will be affected and the bracing will be unsuccessful. Drop locks on full braces many times allow movement while providing standing support.
Stance control can be achieved by various methods. Some of the newer bracing developments include Sensor Walk, which is a brace with a computerized knee control. It is quite heavy (7 lbs) and costs about $20000 (covered now by VA or workers comp). New releases for step control works with cables, which are an improvement on drop locks. Becker makes a smaller sensor, which is attached to the inside of the brace. There is also a new brace, which has only bar on the inside of the leg. It is very lightweight but only works for patients less than 220 lbs.
The future of control is in neuro prosthetics or microorthotics, which uses electrodes to stimulate the central nervous system. This is the “quiet revolution” in bracing.
FES or functional electric stimulation is the newest development in bracing. This system works best with damage to the central nervous system rather than the peripheral nervous system, which is affected by polio. Tests must be done to determine if electrical stimulation would work. The FES machine is similar to a TENS machine and is used to diagnose to see if electronic stimulation is viable. It is most successful for central nervous system damage, not peripheral system damage although it can sometimes be helpful if there are enough neural connections. John and I were tested and even though neither of us had much success, he had more movement than I did.
Companies that are now offering electrical stimulation bracing are Walk Aide and Bioness. A small cuff is worn under the knee with electrodes attached to the skin on nerves in the lower leg. The stimulation of the nerves allows the muscles to work for standing and walking. Even though we were not successful candidates for this type of bracing, this research is in its infancy and we look forward to many new developments that will provide all of us the support we need in new lightweight and smaller bracing.
Carlos concluded with a last thought, “Orthopedics is empowering individuals with disabilities to achieve.”
We thank Carlos for his continued friendship and support for our group. He has been a great supporter for many years and is a regular attendee at our regular meetings. He can be reached at www.progressiveortho.com or email at progortho@sbcglobal.com.
August 2008 Meeting Report
Our August 12th meeting featured Dr. Bradley Schnierow, director of San Diego Sleep Medicine in La Jolla, as our speaker. We opened our meeting with a discussion about having an open forum discussion time beginning at 12:30, a half hour before our regular meeting time. It was decided to try this open session beginning with our October meeting.
John Haggee then introduced Dr. Schnierow who spoke about the importance of sleep disorders for pain control.
It is estimated that 1/3 of health problems are caused by sleep disorders, however, future doctors are given only approximately 70 minutes of education about sleep disorders in their 4 years of school.
Sleep is a biological mystery. Every animal sleeps so it must be important but we just don’t know why scientifically. We do understand that oxygen feeds into metabolism and that sleep resets the brain so that we can process pain properly. It has been found that a lack of sleep magnifies pain. This can be shown by a “cold test”. College volunteers were asked to put a hand into a bucket of ice water and keep it there as long as possible and the times were recorded. Then they were sleep deprived and the test was repeated. After the sleep depravation, the times were shortened because pain from the ice water was magnified.
It has been thought that fibromyalgia and sleep apnea may intensify post polio pain. After much research, it is now believed that fibromyalgia may be a sleep disorder. Lyrica has been FDA approved for pain of fibromyalgia but more study needs to be done on sleep therapy.
In normal deep sleep, slow brain waves are at slow intervals but with fibro alpha intrusion, slow brain waves are at fast intervals, which shows abnormal sleep patterns. Xyrem, a drug that was first used to treat narcolepsy, when taken at night, causes big slow brain waves which restores childlike sleep patterns. This drug has been shown to help in the treatment of fibromyalgia and sometimes all symptoms vanish. Xyrem is identical to a chemical made naturally by the brain so there can be no allergic reaction to the drug, however, it can cause sleep apnea, which can be easily treated. Although Xyrem shows much promise as a treatment to fibromyalgia, fewer than 1000 doctors in this country prescribe it due to possible misuse. It was once thought that it could be used as a date rape drug but it has been shown that the use of it does not affect recognition so it is not used this way. Bodybuilders have used a similar drug as a growth hormone because of its restorative properties, however, used this way it is taken throughout the day, which causes other problems. Because of the benefits of this drug to fibromyalgia patients, it should be studied further for this purpose.
[Obstructive] sleep apnea is an upper airway collapse. It is believed that 5% of the population has [obstructive] sleep apnea. It doubles in menopause and can be a factor in weight gain, high blood pressure diabetes, etc. It can cause heart attack or stroke. Silent stroke or “Cheyne-Stokes” symptoms are rapid breathing and then not at all. “Heroic snoring” is so loud that it can be heard in another room although the patient has no awareness of snoring. Sleep partners often lose sleep because of the snoring. In sleep apnea, the patient stops breathing followed by a gasp for air often causing a loud snore pattern. Patients often feel that they have enough sleep at night but are very tired during the day, often falling asleep.
With a new VPAP machine, there can be a 25% improvement in heart function. Regardless of the severity of the sleep apnea, CPAP works to improve the [obstructive] sleep apnea. 50% of patients love it and 50% don’t. However, the comfort of the machines is getting better with advances in masks and tubing. Heated humidifiers are also required with the breathing machines to keep the airways moistened. A new heated tube, which can be used much longer, is available from an Australian company. It is available at www. Sleepzone.com.au. If treatment has been unsuccessful in the past, it may be advantageous to try again.
Another observation with use of the breathing machine is that some people who have thought that they had allergies for many years have found that the congestion and runny nose disappears after beginning use of the machine.
If consultation is needed, choose a doctor carefully. Sleep therapies many times can be substandard which causes frustration in the patient and a loss of hope that the therapy can be successful. Make sure that follow up is a part of the therapy so that any concerns or problems can be addressed. Sleep therapy can be a life-saver for many patients.
Dr. Schnierow closed the presentation with a question and answer time. John brought his VPAP machine to demonstrate some of the newer advances.
Pain is such a dominant factor in post polio, so we should all be tested to see if sleep therapy can be helpful in our treatment.
John videotaped this presentation. We thank Dr. Schnierow for such a helpful and informative program. To contact Dr. Schnierow, www.SleepSD.com
or email at brad@SleepSD.com
Our next meeting is on Tuesday, October 14. Our scheduled speaker is Allison Blaha from the Foot Comfort Store.
______The next meeting:______
OCTOBER 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.
For July we skipped our normal meeting for the indoor picnic. Good food, friends, live music - the usual swell time. If you weren’t there, you should have been.
For the August meeting, we had guest speakers from Lincare – District Manager Rhonda, Sales Rep. Paul, and Sales and Service manager Joe. They told us about their services (supplies for people with unhealthy lungs but not necessarily for those of us with neuromuscular disordered breathing) and their locations, etc. They seemed to be very proud of their service to people on supplemental oxygen who need to travel around the country.
Thanks to Phil Black.
I don’t know what we’ll come up with for future meetings. If you’d like a guest speaker, let me know who you have in mind.
Have fun … Rick
_____Our next HAPS meetings are:_____
SEPTEMBER 16
OCTOBER 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@adelphia.net
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August Meeting Report by Judy Mahoney
Pest control man Chuck made a surprise visit and became our impromptu guest speaker. He shared with us some eco-friendly pest control hints for our yard and pets. Lavender oil will repel fleas! Just rub some into your pet’s fur. EHow.com has this to say, “For whatever reason, fleas don’t particularly care for the fragrance and tend not to hang around.” Peppermint oil will repel mosquitoes. And yes, both you and your pet need this protection.
We printed up more PPS info cards with the motto “Conserve to Preserve” and our email and phone on the front. Some opted to have their name and contact info on the back to share with people they meet.
There were several mini-discussions, providing much-needed therapy, and we left with renewed energy. If there was a theme, it was “Choose when to economize and when to splurge” (the energy of your pps-affected body, that is). Spend yourself in the things you must do and the things that please you. You have to live your life, to make your body work for you. Having it last forever isn’t the goal. Some of us push, push, push when it’s needed, and rest-rest-rest in between. Others live more evenly. Don’t let PPS rule you. You rule it.
Betty McFarland brought Betty W’s new address. She has relocated from Moreno Valley CA to live with her daughter in Washington State.
NEW MEETING TIME for all meetings: 11am – 1pm
December Holiday Party: Sat., December 20, 11a-? Look for details in next issue.
Betty’s Million Dollar Torte
1 yellow Jiffy cake mix (or 1/2 yellow cake mix)
1 small instant vanilla pudding
1 20-oz can crushed pineapple
2 cups milk
1 8-oz Cool Whip
1 8-oz cream cheese, softened
1/2 cup chopped nuts
Make small cake mix - bake in 9-1/2 x 13-1/2 pan. Cool. Drain pineapple. Mix milk and cream cheese in large bowl, spread over cake. Spread drained pineapple, top with Cool Whip, and sprinkle with nuts.
Refrigerate. Can be frozen. Best after 2 or 3 days.
____The next Riverside PPSG meeting:____
OCTOBER 18
Remember the new meeting time - 11 A.M.
______________________________________
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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The High Desert PPS group had a quiet general discussion meeting in July. In August we had Robert Noun from the Victorville Fire Dept. speak on Disaster Preparedness for The Disabled. He passed out a lot of very informative material for us to start planning for that big earthquake (that we hope never materializes) or fire in our area.
Our September mtg. will be lunch in "Old Town" Hesperia and with our regular group discussions on what does or doesn't work for us!
__________Next meetings:___________
SEPTEMBER 10
OCTOBER 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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Reported by Rick Van Der Linden
At the July PSP meeting, I gave a spontaneous presentation entitled Body and Spirit.
In this “informal and informational” hour and a half, I played the guitar and sang a couple of songs, and talked about ways to put passion in your life once you’ve learned to manage PPS.
As examples, I pointed out how, through careful management, I went from “crawling” during the first two years of PPS to the useful person I am today. Three other folks also served as examples: two ladies who nearly died from breathing problems and are now (thanks to overnight ventilation) fire-breathing advocates for the PPS cause, and a guy who went from a desperate struggle to survive in the working world to one who carries the Word of hope to prisoners.
One person commented, “I’m 82 years old, and that was the most inspirational presentation I’ve ever heard.”
Look for details of this presentation in a future issue of this newsletter.
From Sue Lau:
A grant of $100 million has just been awarded to Rotary International (RI) by the Gates Foundation to better ensure that polio will be eradicated.
The caveat is that Rotary must raise $100 million per year over the next three years, announced Michael Abdalla, MD, former speaker of PSP and Orange County resident who has served as a RI Trustee for the past few years. He's asking that all post-polio groups in Southern California help to raise these funds from polio survivors, family members, friends, associates, etc.
In addition to helping to directly raise these much-needed funds, polio survivors are asked to provide their personal stories to be used by RI in this fundraising effort that has already resulted in $700 million raised in 2008. Anyone who has an idea for raising funds, who has obtained cash donations and/or would like to share their story about polio and post polio is asked to contact Sue Lau.
Encore! While the fight to eradicate polio goes on, Polio Survivors Plus will hold its annual, old fashioned picnic at 12 noon on Saturday, September 6, 2008 in San Juan Capistrano. It's another opportunity for polio survivors and their spouses, caregivers, friends and family to meet poolside and to get to know each other better.
The menu will feature PSP's popular surf and turf combinations that'll be served straight from the barbecue as cooked to each person's preference. Bring your towels and bathing suits! Join in the fun of playing silly games. RSVPs are required. Rides and carpools can be arranged.
PSP's annual summer picnic links the special presentation how to manage PPS that Rick Van Der Linden gave this past July 23rd with the celebration of another year since Polio Survivors Plus was founded.
The featured speaker in July, was "PPS Manager" Editor Rick Van Der Linden who spoke about how he manages PPS. Meeting attendees chimed in with amazement and enthusiasm as everyone shared their experiences.
For further information about upcoming programs that will feature Gladys Swensrud, polio survivor of San Diego, and how to become involved in Rotary International's continuing challenge to eradicate polio, contact Sue Lau at MaLiebchen@aol.com.
___________Next meeting:____________
SEPTEMBER 6
PICNIC!!!!
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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 or Gene Minder efminder1@cox.net
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Dr. Carol Vandenakker presentation now available on video
On 2/20/08, Carol Vandenakker, MD, Director of the Polio Clinic at UC Davis Medical center gave a presentation before the PSP group. As Gladys Swensrud reported in the May issue of this newsletter, the basics of polio and PPS were very well covered.
The good folks at PSP made a video, and copies are now available through this newsletter.
The hour and twenty minute video could easily be titled PPS 101. This is great information for folks who need a jump start on PPS.
To get a copy for personal use, or for your support group’s library (great for new members), contact me:
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Hi Rick,
… I don’t own a computer, so I am sending you this snail mail.
I do greatly appreciate all of [the] research and hard work you put into the PPS Manager. It is very meaningful to me!
I live alone since my beloved was killed 8 years ago. The newsletter helps me feel less alone with this damned disease.
If I lived closer to you in Hemet I would come help you put it out.
I am a positive person with a good attitude and I agree with you that being creative and spiritual are more important than drugs in keeping us alive and full of hope.
Keep up the good work – God bless your efforts!
Thank You
Marion Miller
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Rick, your newsletter might be a handy place for this -- I used them in my home and saved $200 on each door widening.
They're [offset door hinges] made by a Houston family business ... this is one link to get them.
http://www.allegromedical.com/daily-living-aids-c519/swinging-door-hinge-offset-door-hinges-w-brass-finish-p191898.html
Carol Thompson
[$11.95 per pair plus shipping. Call toll free 1-800-861-3211]
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Rick - I now have access to the Internet so you can eliminate sending the Newsletter to me via snail mail.
I used to belong to the San Diego group but now live in Northern California. I can attend a local polio group but the information you provide is so outstanding - I just cannot thank you enough. …
I extend my heartfelt appreciation to you and all of your assistants and contributors for the constant attention given to helping all of us.
Sincerely, Joan Wesockes.
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Hi Rick -
I have internet access and would like to save you money and have you remove me from the snail mail list. I hope that others respond and this ends up being a cost savings. You were very smart to let everyone know how much everything costs to produce this as I imagine most people are not aware of the actual cost of your newsletter.
I for one, look forward to the newsletter and I appreciate everything you do to make it happen.
Thank you for all your continued hard work, Rick.
Best to you,
Paula Lambert
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Dear Rick,
I have been receiving your Newsletter for many years and am extremely appreciative of all the hard work and many hours you and your volunteers have spent getting the informative news to us. I think everyone of your readers will be more than please to help you conserve your time, writing, compiling, expense, etc. Please add me to your email list and drop me from the snail mail. May I just say in parenthesis that I will sadly miss the mailed newsletter. I would quickly make myself a cup of tea, pop my feet up and spend a relaxing half hour catching up on new information, other clubs and some people I had met.
My heartfelt thanks for all your hard work it hasn't gone unappreciated, Rick, and I think I speak for all of us who have received the benefit of this hard work when I say "THANK YOU VERY, VERY MUCH. MAY YOU HAVE THE STRENGTH, ENERGY AND FORTITUDE TO CONTINUE. GOD BLESS YOU".
Sincerely
Lesly Clark
Former La Jolla Member and now in sunny Arizona.
Hi Lesly,
It’s sad to think you’ll lose even a moment of enjoyment in your life. If printing the newsletter from your computer doesn’t work for you, let me know and I can put you back on the mailing list.
Rick
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Hello Rick:
I have Post Polio Syndrome, having Polio in 1952 at the age of 13 yrs. Over the years I was blessed with very little complications other than my muscles that help me breath and some paralysis in my throat. My mucus has gotten very sticky and I try to cough, but that is hard and doesn't get it off my left vocal cord that is paralyzed. I have tried many medications, but none help. If I lay on my right side and keep clearing my throat I can get some off, but can't do that all the time. (mucinex makes it thinner, but not less sticky) I also have paralysis in the back of my throat that Simply Saline helps get some out.
I would be grateful if any one would have some suggestions to help me with this sticky mucus.
Thanks and have a great day. Dianna
Hi Dianna,
Sounds like you’re trying the right things.
Are you using bilevel ST or a volume vent? Do you use a heated humidifier with it? How about COPD, allergies, etc.? Any problems there?
I tend to have the same problem. Things that help: Advair (as needed) to treat COPD symptoms, overnight bilevel mechanical ventilation to strengthen muscles and open pipes, adjustable heated humidifier ... Also, the rest that the vent gives my breathing muscles allows me to sing. Singing is good for many things (emotionally, spiritually, and physically), but it also blows out the gunk.
Rick
[Do YOU have a solution? WRITE to the newsletter. – Rick]
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Hi Rick,
I am responding to your request advising you that receiving the PPS Manager through the Internet is fine with me.
I am sorry to hear of the financial difficulties and the impending demise of your informative newsletter. I am ashamed to say that I have not been forthcoming with any financial assistance for the newsletter in the years you've sent it to me. As you mentioned, the financial cost is only part of the "price" you pay for publishing the newsletter. There are so many other factors you must deal with in putting out the quality newsletter you are known for. The time and energy you've contributed cannot be easily measured.
I can understand why after ten years you are seriously considering no longer publishing the newsletter, even though you know how much your efforts are appreciated. I only published a newsletter for two years and realized that it can consume so much of one's precious energy and time.
You have done an outstanding job. I hope that somehow, someway the PPS Manager will continue as long as possible.
Sincerely, Marion ...sometimes you've got to act a little silly to keep your sanity in life.
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Note from Rick VDL:
This has been a small sampling of the letters received. Suggestions included:
Charge subscription/dues - good idea, but then we’d have to pay our own postage, doubling the cost of printing and mailing.
Publish four times a year instead of six - even better idea. Though it would be confusing to work it into the “every other month” schedule of many groups, I’m considering the idea for next year.
Get help – About 90% of the work I do is in the gathering of information, support (contact with fellow PPS managers), deciding what to print and how to go about it, and writing. Formatting the newsletter takes three or four intense days.
The best way to help is to send email – ideas, original articles, suggestions, what works for you, positive suggestions …
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Extra special thanks to Zachariah Bruce and his company, Western Properties Management of San Diego, for sponsoring this issue.
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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 Rita Lack, Jean Cullinan, Richard & Lois Jackman, John & Linda Hagee, John & Norma Anderson, Carl & Virginia Nickols, Zachariah Bruce of Western Properties Management, Karen & Mark Arnold, Shirley Rogers, Delmer & Karen Ross, Robert & Rory Riedle, Sandra & Stacie Snorek, Terry & Barbara O’Conner, Alice Gowing (in memory of Bob Hudson), H.H. & Donna Boynton, Glenn & Marjorie Williams, Charles & Sharon Anderson, Elesa Trisler, Walter & Georgene Foster, Geoffrey & Andrea Hollenbeck, Antonio & Rebecca Gigliotti, Nona Atkins, Louise & Marie Paxton, Holly Beam, Donald & Dolores Masturzo, Horace & Joyce Sapp, Shirley & Julie Hueftle, Donald & Mary Moffett, Larry Kueneman, Marion Miller. 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.