September 2007
In this Issue:
Pain Management Toolsby Rick Van Der Linden
Letters and much more…
Meeting reports:
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FROM THE EDITOR
Hi Fellow PPS Manager,
It’s hard to believe summer’s almost over. Kids are going back to school, football season starts this month, days are growing shorter …
I never got around to finishing the pond I started building three years ago. Didn’t get started on the new deck around the hot tub I never got around to buying. That would have been nice. Oh yeah, the book is no closer to being finished, either.
It sounds like nothing got done and yet, looking back, there was no time to spare. I guess that’s what it’s like when you’re managing post-polio. You take care of yourself first, and then do what you can with what’s left.
For
me, that means sitting at the computer doing this (volunteerism is good for
you), and playing music (stress reduction – also good), plus there’s the
honey-do list (not getting bonked on the head with a frying pan is healthy). If
I don’t have time for other things, so be it.
Have fun .... Rick
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MEETING REPORTS
There were fifteen people present for our July meeting. Those who took time from their busy summer schedules to come were treated to a dynamic presentation by Joanne Price, Fall Prevention Educator and Owner of ResponseLink. ResponseLink is an at-home safety, medical alert system allowing two way communication, 24/7 response in case of an at-home emergency. Joanne, who has taught fall prevention for a decade, was not only well versed in the topic of falls, but her easy, humorous delivery thoroughly entertained us.
Joanne often presents to groups in excess of 100 people. And, she regularly informs and entertains at gatherings sponsored by the Parkinson's Disease Association of San Diego, as well as other community organizations.
Today’s presentation was jam packed with useable information that we could immediately put into practice. Her hand out contained a summary of ways to immediately get started being safer in each room of the house. As Joanne noted in her introductory remarks, 30% of all falls can be avoided. Taking steps to assure one's safety at home is of utmost concern. And she explained there are ways to minimize the risk of home falls by taking some easy, inexpensive first steps.
With her handout as a guide, we traveled together, room to room, learning what changes would be the easiest and most advantageous for us to make right away. At the top of her list, we found a common source of falls in any room is inadequate lighting. Most of us have had the experience of entering a dark room and, while reaching for a lamp, stumbled over a chair slightly out of place or shoes left in the middle of the floor. Joanne offered handy, inexpensive portable lighting suggestions for illuminating the path along a dark hallway and into a dark room.
We discussed the fact that the bathroom is the room where most serious injuries occur. The reasons for this are multi-fold:
- Bathrooms are where we go when we are in our most vulnerable state.
- If we are sick and moving from the bedroom to the bathroom, we might be physically at our weakest.
- When we use the bathroom at night, we are often half asleep and are reluctant to turn on the light, waking us still further.
- Bathrooms are filled with hard surfaces from the floor-to the countertop-to the toilet-to the shower-or even to protruding towel bars and other dangerously protruding edges.
- Because the room is small, it is possible to get wedged next to or under any of the above.
- There are often throw rugs, which can trip the unsuspecting.
- Many oils, lotions and soaps can make standing or leaning surfaces slippery.
Joanne had several other cautions for the bathroom as well. As we followed her logic, we understood why that room in particular put those with muscle and standing issues particularly at risk of falling.
A few of her many, many household suggestions were to install grab bars for handy access near toilets, bathtubs and sinks, make sure most often used kitchen items could be reached without having to step up onto a stool, and to always wear proper footwear. Joanne shared that although going barefoot feels good at home, wearing shoes is better for secure footing when you step.
Joanne Price has written a book titled: Fall Injury Prevention for Older Adults…and Those Who Care About Them. She graciously shared a copy with our PPS group. I would say it is a must read; she covers everything from: balance, to medications contributing to falls, to helpful dietary hints...and everything in-between.
You can reach Joanne for speaking engagements for your group by calling: 1-760-633-2227. Or you can contact her through her website at: www.fallpreventioninfo.com. Her book, which was newly published in 2007, can be ordered through www.amazon.com, www.barnesandnoble.com or through the publisher at www.iuniverse.com.
___The next San Diego meeting:___
September 8
Guest Speaker Rick Van Der Linden
_______________________________
Regular meetings (until further notice) are at 10 AM on the second Saturday of odd numbered months at:
Kaiser Permanente 4647 Zion Avenue San Diego, CA 92120.
For more information call Rick Kneeshaw 858-566-4016 or email piecon@mindspring.com
Or go to http://polio.home.mindspring.com
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Looking forward to our Friday, October 12th meeting, as our last meeting was in June we will have to share our many summer break adventures and challenges!
Back to the business of managing post-polio, Joe Camaya has the books on hand that he ordered over our break. Managing Post-Polio: A Guide to Living and Aging Well with Post-Polio Syndrome. I was able to pick mine up from Joe and found it a valuable resource of good information for myself and to share with family and friends.
We will also have our Coachella Valley Post-Polio Support Group Members Information Packet [binder/ notebook]. Joe Camaya is also kind enough to keep this information on hand and ready with updated members list too.
We look forward to discussions on some events that occurred while we where on break:
> On May 12th, the Coachella I am sorry that I was tardy Bout getting the disc in the mail.alley Health and Safety Fair, presented by the CV Emergency Managers Association.
> On May 30th, the Senior Forum presented by the Riverside County Advisory Council on Aging. Our members Bob and Lois Jackman, owners of Yes I Can had an information table there with hand-outs and even donated one of the door prizes.
> One of our members had plans to attend the June abilities Expo in Long Beach and can hopefully share that information with the group.
> We have some additional book offerings to discuss and hope that the Braddys have received their ‘voice recognition personal computer’ from a grant with Community Access Center [www.lica.org]
Until we see you on Friday, October 12th at 10 AM stay healthy and happy.
Barbara Hall and Joe Camaya.
_____The next meetings:_____
OCTOBER 12
____________________________
2nd Fridays at 10 AM at Portola Community Center, 45-480 Portola Ave, Palm Desert CA Park in rear.
For information, contact Joe Camaya stan-n-ollie@msn.com, (760) 365-3587
or Barbara Hall whall233@aol.com, (760) 329-9593
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August 17, 2007 Meeting
The Escondido PPS support group welcomed guest speaker Dr. Bradley Schnierow -- specialist board certified by the American Board of Sleep Medicine, as well as the American Board of Psychiatry and Neurology, Assistant Clinical Professor at the U.C. San Diego School of Medicine, Director of the UCSD Sleep Disorder program, and staff physician at Scripps Memorial Hospital. He also has a private practice and sleep clinic in La Jolla.
Although the subject was Chronic Pain (in particular Fibromyalgia) and Chronic Fatigue, the main focus of Dr. Schnierow’s presentation was in the area of sleep disorders. Dr. Schnierow provided convincing proof that without adequate sleep, the perception of pain increases at least twofold. It is, therefore, possible to treat many pain syndromes by first testing for, and then treating existing sleep disorders.
His main recommendation for Fibromyalgia is a seldom-prescribed drug called Xyrem. He said that his treatment is 95% effective while commonly prescribed sleeping pills are ineffective. His clinical experience also suggests that bilevel use, which he prescribes for some of his PPS patients, can be effective pain control in some PPS cases.
Other suggestions for improving sleep include resetting your biological clock to fit your lifestyle.
The second hour included open questions from the audience. Most of the questions dealt with Xyrem and its side effects and interaction with other drugs. Dr. Schnierow believes it is a safe drug when dosage is carefully monitored. Also discussed: drug addiction, and general use of pain medications. He stated that opiates increase the incidents of central sleep apnea -- the brain forgetting to breathe.
In response to one question, he stated that even though he has a sleep clinic, the main method of diagnosing a sleep disorder is by observing and interviewing the patient and the patient’s sleep partner.
The last question was, “How many people in this room who use pain medication also use bilevel? And, could bilevel be a better alternate treatment?” Though there was no time for an answer, Dr. Schnierow thought it would be interesting to find out.
For more information, visit http://www.sandiegosleep.com/staff.html
Report by Rick Van Der Linden
______The next meeting:______
OCTOBER 9
____________________________
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. call Mary Clare at 760-741-5075 or postpolio@cox.net
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Hi Everybody.
HAPS Summer Picnic.
The pictures say it all.
Plenty of food provided by everyone.
The Lincoln Street Band performs.
HAPS folks enjoying the music.
You think Gayle and Jim are having fun?
Bunny Smith, phone caller and party planner.
If you weren’t there, you missed a good one.
Our August meeting was a small open discussion.
Nothing special is planned for September and October, so if you just want to talk about it, drop by.
Have fun … Rick
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NOTE: NEW MEETING HOURS
10 TO 12 AM
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_____Our next HAPS meetings are:_____
SEPTEMBER 19 @ 10 AM
OCTOBER 17 @ 10 AM
____________________________________
Regular Hemet meetings are at 10 AM to 12 noon on the third Wednesday of every month at:
Sun West, 1001 N. Lyon, Hemet. For more info call RickVDL (951) 926-5492 or e-mail ppsman@adelphia.net
Meeting report for September 18, 2007 –
New friends, Gladys Swensrud and Judy Mahoney.
Speaker Gladys Swensrud, of San Diego
Gladys began by sharing her goal: “My objective is to try to see state of California closer through meetings –there is strength in numbers.”
Gladys is an engaging speaker. – We never knew the time had passed. She covered a lot of ground, both historical of her experience and outward toward us, giving us insights on how to approach our own healthcare systems effectively, and encouraging us to take ourselves seriously, not dismissing our symptoms. That last one kept coming up: You have to recognize the changes in your body. Just because others can’t “see” them (and maybe you can’t either), you feel them, and you know they are real. We have to take charge.
PPS is not just a collection of random symptoms; it is technically defined as a motor neuron disease.
We worked overtime to rehab and then had the drive to “do it all” and not be left out of anything. Nothing seemed to stop us – so much so that others now wonder why we aren’t gung-ho any more. Gladys quits her day at 2 pm. “If you want to wash your car, do it at 5 am when it’s cooler, and then spend the rest of the day in bed.”
One of the main problems with polio/pps is we tend to separate ourselves as a group. But we have to align ourselves with other neuro-impaired groups. We will never be able to stand alone as a disability group. However if we align ourselves with ms, md, als, etc., together we make great numbers. Physicians take notice when you speak as a huge part of the population.
Much of our discussion was on the bi-level respiratory assistance, which has the advantage of one pressure coming in, while allowing you to exhale into a lesser pressure. (The potential danger of the CPAP is with weakened respiratory muscles we cannot exhale against the higher pressure coming in, and it may put our CO2 out of balance.) “I only initiate 40% of my own breath. The bi-level helps me,” Gladys said. “If you’re not dreaming, there’s (likely) something wrong. I wasn’t getting to rem.”
If your healthcare providers do acknowledge that you qualify for a respiratory device, they approve the CPAP, but will most likely refuse the bi-level. CPAP stands for Continuous Positive Air Pressure. For polios, the pressure coming in may be too hard to exhale against.
If you are outside of Kaiser and can go to Progressive Medical, you should go there. If you are Kaiser, ask them to give you the same level of care you could get at Kaiser San Diego, because it’s already an established program in San Diego. Or ask them to send you to SD Kaiser so you can get cared for properly. Progressive is in Carlsbad now. 1-800-491-2292
Flip-Chart Poll taken by Gladys Swensrud at Riverside Mtg
Riverside Guests with PPS:.............................................. 13
Do you exhibit any of the following?
1) Frequent sighing.......................................................... 6
2) Voice falling away when you speak.............................. 7
3) Headaches upon awakening........................................ 6
4) Awakening at night gasping for air.............................. 7
5) Excessive daytime drowsiness..................................... 4
6) Overwhelming fatigue from the moment you awaken...9
7) Frequent nighttime bathrm visits...............................10
8) No longer remember dreaming.................................. 11
9) No longer make plans for the day..............................11
[Gladys Swensrud is always available to answer questions about the Kaiser/San Diego Neuromuscular Respiratory Program. It is her mission to see polio survivors throughout our state and nation recognize symptoms of possible respiratory compromise related to Post-Polio Syndrome. The importance of being correctly tested and given the proper equipment and services to support our unique respiratory needs cannot be overstated. At the every least, she feels it is essential for polio survivors to establish a respiratory performance baseline for future reference. If you have questions, please feel free to email her at: swensrud@pacbell.net]
____The next Riverside PPSG meeting:____
OCTOBER 20
______________________________________
Riverside PPSG Meetings: third Saturday of even # months at 10 AM.
at the home of Bryan & Judy Mahoney, 3465 Ramona Drive, Riverside CA.
For more info. contact: Judy PPSRiverside@aol.com (951)788-9310
or Betty McFarland (951)243-6991 bbooplink@aol.com
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For information contact Marsha Hart at (909) 878-3092 or Email healthwithhart@charter.net
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Happy fall season!
The High Desert PPS meetings will be at 12:00 on the following dates: Sep 11 and Oct 9. We don't know locations at this time, but anybody interested can contact Vi Macias at (760) 949-6775.
No speakers are scheduled at this time due to being so far from civilization.
Kay
__________Next meetings:___________
SEPTEMBER 11
OCTOBER 9
___________________________________
Regular meetings: Second Tuesday of every month. Location varies.
For information contact Vi at (760) 949-6775, or e-mail BillHerold@aol.com
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POLIO SURVIVORS PLUS OF ORANGE COUNTY
Cards and pedometers were prizes for anyone providing the correct answers to Patty Moutan's questions at the July meeting of Polio Survivors Plus (PSP). With her associate, Kristin Gramling, RN, in attendance from the Alzheimer's Association, she conducted a workshop on how to "Maintain Your Brain," teaching individuals "how to live a brain healthy lifestyle."
Patty Moutan
"There are a lot of things you can do to help keep your brain healthier as you age," Patty said. "Your brain ... use it or lose it. Stay mentally active. Challenge yourself by learning and experiencing new things."
"(Regarding) your body ... get exercise (listening to the signs not to overexert yourself and preserve those precious PPSers' motor neurons) and eat right," she continued. "Exercise and good nutrition are important for your heart and your brain, so protect your head and your body from injury. Take care of you. Keep stress levels under control and make time for friends and family. Keep a purpose in your life. Get help if you re depressed. You have the power to affect your brain health. Do the things you learned in your workshop and maintain your brain!"
A guide was distributed to all attendees to assist polio survivors and caregivers to make simple lifestyle changes that can help keep one's brain healthy.
On August 25th, Polio Survivors Plus celebrated another year as a post polio support group with a barbecue at the home of Sunny Hartman, PSP charter member. Family, friends and caregivers joined polio survivors for good company and a special trio's performance with piano, viola and violin! We're now hoping for an encore at PSP's December 2007 meeting, do read upcoming issues of "PPS Manager" for more details.
For October 24th, guest speaker Gladys Swensrud will address the topic of "Polio Survivors and Respiratory Issues" in Clubhouse 1 of Laguna Woods Village.
Note: Polio Survivors Plus meets on alternate months, depending on the schedules of special guest speakers.
Reported by Sue Lau
___________Next meeting:____________
October 24
___________________________________
Regular meeting are held on the fourth Wednesday of each month, 1:30 to 3:30 PM.
At Laguna Woods Village's Clubhouse 323822 Avenida Sevilla, Laguna Woods, CA
For information and to RSVP for gate entrance permit, contact: Sue Lau at (714) 639-7497 or e-mail Maliebchen@aol.com
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Pain Management Tools
Just a thought by R.E. Van Der Linden
At the August 2007 Escondido meeting, Dr. Schnierow stated that he was “pleasantly surprised” when a patient reported pain relief as a result of bilevel use. [see Escondido PPS Meeting Report in this issue] It was no surprise to me.
Those of us with polio weakened breathing muscles can experience pain and/or fatigue anywhere in the upper body area. After all, breathing requires every muscle from chin to hips. Ten or fifteen times a minute. That’s maybe fifteen or twenty thousand breaths a day just to stay alive. And you can’t stop and rest like you can rest your legs or your arms.
And, think about this: when you lie on your back and take a breath, you have to lift your belly to make room for the incoming air. If you’re lifting, say ten pounds of belly one-quarter inch, and you do it 12 times a minute for 8 hours, you’ve carried that 10 pounds the equivalent of 80 feet straight up.
It’s easy to think of a nap, a scooter, and braces as pain management tools – if we can stop using our muscles, they might hurt less. We should also think of bilevel the same way, but with one big difference: you can stop and sit down to rest your legs, but you can’t stop breathing. Bilevel rests your breathing muscles.
For the past three years, whenever I start feeling that burning ache in my neck, back, or ribs, I know it’s time to “hook-up” to my machine. I should also point out that the pain that starts upstairs can spread downstairs if it’s not properly managed. And, pain medications only mask the pain, they don’t manage it the way rest does.
It took Dr. Schnierow’s “pleasant surprise” to help me see the truth. Bilevel really is a pain management tool.
My VPAP III S/T awaits me.
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Owning Your Bilevel – follow-up
Medicare has guidelines regarding the repair, maintenance, and replacement of our bilevel ST machines – medically required DME. Although they make it sound complicated, at least they are making help available to keep us breathing.
Check out – https://www.noridianmedicare.com/dme/news/manual/chapter5.html#conditions
Thanks to Judith Fisher for the info.
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Rick,
Thank you so much for all the time and effort you put into the PPS Manager issues.
The medical updates and letters help me a great deal. I was diagnosed with PPS in 1988 and have experienced a lot of changes in that time.
Susan C.
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Dear Rick,
Thank you so much for doing the newsletter for us. It is always interesting and informative. Thanks too, to your wife for helping.
Enclosed is a check in the memory of Bob Hudson who so much enjoyed our meetings. He was our hero.
Alice G.
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Dear Rick,
Enclosed is a small donation to help with the costs of your newsletter. You are a very dedicated man to spend the amount of time and effort that you do. Thank you.
I have greatly appreciated your frank discussions of PPS symptoms and remedies since I began getting the newsletter about a year ago. As with many polio survivors I had led a very busy and rewarding life until about five years ago. I taught and principled elementary school, taught piano lessons after school, raised three kids without a husband, earned a doctorate, and taught college at night. When my energy began to take a dip as I approached 69, I tried to blame it on aging, but that didn’t work, since nearly everyone in my family lives actively into their 90’s.
Reading your information, along with the advice of some friends, led me to seek some medical opinions. I connected with Dr. Richard Shubin, a neurologist who himself has a PPS drop-foot. He and the staff at Casa Colina in Pomona administered a battery of tests that helped me come to terms with my fatigue and back pain. I got a leg brace for my drop-foot, had physical therapy and an epidural for my pinched nerves in the lower back, and resigned myself to taking a couple of Neurontin and Celebrex pill each day.
I am again sleeping soundly all night, waking up with great plans for each day, and working half time at the college. Life is good, and I intend to keep squeezing in every bit of activity that this body will take. I’ve learned the value of intermittent rest and regular exercises, and have learned to cope with symptoms that remain. I’ve also learned the strong role that faith in God can play.
Thanks again for your part in this. Keep up the good work.
Elesa T.
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Dear Rick,
I’d love to have the package of pre-surgery materials. I’m going to have cataract surgery this summer.
I think this matter of anesthetics is perhaps the most dangerous facing those of us with PPS. My experiences in the dentist’s chair have been almost bizarre. The new replacement for Novocain – the local that has the benefit for non-PPS people of wearing off by the time you leave the office – is totally useless on me. But at least its failure to work is consistent, which is more that can be said for the breathable general anesthetic dentists use. My last experience with that was about 8 years ago when I lived in Texas and I was having a 3-phase series of oral surgeries. It worked perfectly for the first surgery, didn’t even make me drowsy for the second, then worked perfectly again for the third!
I’m going to contact UCSD and see if they need more PPS research subjects. Anything we can do to help the medical community needs us behind it 100%. I read an article a few years ago I wish I’d saved. It was about a research physician back East who operated as a sort of clearing house for samples of brain material from people who died and had neurological conditions. At death the brain of a donor would be forwarded to this man, he and his staff would prepare slides, etc., then researchers could obtain the material for study. I think this is another valuable service we could provide to help crack the riddles of PPS.
Hope the enclosed check will cover any cost on the pre-surgery materials and help you keep the “PPS Manager” going.
Carolyn M.
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Hi Rick.
I’ve learned (and been alerted to) so much from our PPS Manager that when I read Marite Vella’s letter (January 2007 issue PPS Manager), I felt perhaps I could offer some thoughts and/or help. Return the favors!
After many falls over many years (no quads – walk with “locked” knees – which when they “unlock” for various reasons: tired, trips, etc. – cause the falls) I ripped my meniscus all the way across last year. Because of my situation (lack of quads and many other leg muscles) and because I had made “progress” with my terrific Physical Therapist, my knee orthopedic surgeon cancelled the meniscus repair 48 hours before the surgery! I was kind of shocked – as I had done much homework, had two other consults, one of whom does lots of knees as he is the orthopedic Doctor for the San Diego Chargers (those young guys have lots of torn menisci (sp?) etc., etc. etc.). However, Dr. Swenson, my deciding Orthopedic Doctor, felt, in his words, “I have six women in Scripps Memorial over there with total knee replacements” and I know just how the surgery will come out. With you (polio) you can’t know! And you’ve made progress… who knows how!! I asked him, therefore, if he believed in prayer and PT!
Dr. Swenson (Craig) trained under Dr. Jacqueline Perry at Rancho Los Amigos (USC Medical School’s Rehab Center in LA) and is very familiar with polio. I think it was a good decision – still hurts some but that could be just as much from the arthritis in there. By the way, for Marite, Dr. Swenson is quite funny and irreverent and refreshing and patient friendly. But even more to the point, grew up professionally with polio at Rancho. Good Luck, Marite!
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Rick, I would appreciate that information on anesthesia. I had to have an unplanned surgery over Christmas…there was no cancer … had nothing to do with the polio residuals. But it made me very aware that I’d best get some info…as in, “you never know”
Many thanks,
Sally S.
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Dear Rick,
I had polio when I was eight years old, and was diagnosed with PPS in 1988. Since then I have experienced the usual post polio symptoms of muscle pain, fatigue, and ongoing weakness year by year. My question is, is anyone other than me experiencing 'brain fatigue"? I have had, what I consider to be, weakening in my thought process and memory over the past year or so. My Neurologist has ruled out any other physical cause, but has doubts that PPS can cause symptoms of brain fatigue. My Physical Medicine doctor, and my doctor at Rancho Los Amigos, both doubt that polio effects the nerves in the brain. However, I have read a couple of articles, one recently in the magazine New Mobility, where Dr. Bruno has referred to a pattern of seeing brain fatigue in some polio survivors unrelated to the normal aging process. I wonder, are other polio survivors that you know experiencing similar brain function problems that they believe are related to Post Polio?
Thank you for the PPS Manager. I learn a lot from every issue, and I appreciate all of the work that you put into them.
Sincerely,
Susan C.
Susan,
Thanks for asking. Since my plan is to make the next issue mostly based on reader input, it will be a good way to start out.
I'll answer in more detail in September, but in short, it's a very common symptom. Brain fatigue (which can include loss of concentration, word finding problems, etc.) can result from chronic pain, chronic physical fatigue, but mostly from hypoventilation.
As far as polio affecting the "nerves in the brain" there were studies (autopsies) in the 1950s that catalogued a pattern of lesions throughout the brain but mostly in the motor function area. This suggests that we may have some of these little points of damage in our brains, though they may not have much effect on brain fatigue.
Living in Big Bear, there's a high probability you are suffering from the effects of not breathing enough. The crazy thing is that when you have that fuzzy brain thing, it makes you afraid to make a decision, so you put off the decision to do the right thing for fear it will be the wrong thing.
Rick.
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Dear Rick,
Here’s a piece of information PPS people need to know. I’ll relate how I discovered it.
A number of years ago, when I had a bad cough, I used some over-the-counter Primatene Mist. Twenty minutes later I was on my way to the ER in an ambulance, going into anaphylactic shock. It was eventually diagnosed as being caused by an allergy to the epinephrine in the Primatene. And never mind those doctors who still think it’s impossible because epinephrine is “just synthetic adrenaline and your own body makes that.” (As the allergist explained it, even under the worst fear, your body is not apt to release equivalent adrenaline as the concentrated epinephrine.)
While rare in the general population, there is evidence now that it’s [sensitivity to epinephrine] more common among PPS people. I recently asked my Pulmonologist (one of the only doctors I’ve found who’s knowledgeable about PPS) if he’d heard of a connection. He told me there was quite a bit of “anecdotal research” (i.e. where researchers had seen or been told of incidents; as opposed to direct research where, for example, a PPS person was administered epinephrine and the result observed.) He said no reputable researcher would ever use the direct approach because anaphylactic shock can be fatal (and what an irony – the usual treatment for shock is to administer epinephrine.)
Sincerely, Caroline M.
PS: Heard from anyone who’s had experience with the new local anesthetic the dentist’s are using? It’s supposed to wear off shortly after the procedure is done – no more numb lips and tongue for hours.
Well, I went a few months ago and my dentist tried it on me but rather than working for an hour or so, it wore off within a couple of minutes! Fortunately, she knew about my PPS … so she half expected a weird reaction to the new stuff and had a bottle of the old local standing by.
Hi Caroline,
I have been using alternatives to Novocain for a few years. I discovered that there are a few Epinephrine free (or reduced) choices and it pays to try them all, starting with the weakest one. The key is to remember which one worked the best.
Rick.
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Thanks, Rick.
The [bilevel] machine has helped keep my wife alive.
Carl.
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Thank you, Rick, for your very interesting newsletter. I now recognize my symptoms that have persisted since nursing school 69 years ago as doctors examined me and noted the smaller, weaker left side of my body.
Bless you!
Caroline R.
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Dear Rick,
Enjoyed the latest PPS Manager – as always.
Your article on pneumonia [“How to Get Pneumonia” January, 2007 PPS Manager] was undoubtedly of interest to all of us with breathing difficulties and problems swallowing. Are you aware of the “CoughAssist” machine? Technically, it’s called an in-exsulflator, and is for use by those with weak coughs. Essentially, what it does is cough for you by gradually applying a positive pressure to the airway, then rapidly shifting to a negative pressure.
Made by Emerson Company, 22 Cottage Park Ave, Cambridge, MA 02140, e-mail info@jhemerson.com, or visit www.coughassist.com
I have one and the great thing is that it’s covered by Medicare. Luckily I haven’t had to use it for aspiration yet, but I think having one is a wise precaution because when a lung problem is building up to pneumonia there’s no time to be going through the lengthy [process of getting the help we need.] I think these things could be real lifesavers.
Have you ever heard of anyone, especially among those of us who use a bilevel, waking up with a horrendously, and painfully dry mouth? I use a humidifier connected to my bilevel (which ended the dry nose problem), but it doesn’t help [the dry mouth problem.]
We really need to get more public awareness of PPS. I noticed – once again – when there was a recent wave of articles on stem-cell research on TV and the newspapers that PPS was never mentioned as a condition of relevance. There is always mention of ALS, MS, Parkinson’s, spinal Cord injuries, etc,. but never PPS. Yet, all tolled, there are probably more or us and certainly more famous victims of childhood polio, who might be marshaled to make public service announcements for TV, etc. Of course, getting something like that organized would take more energy than anyone with PPS has.
Keep up the good work, and watch out for the germs.
Carolyn M.
Carolyn,
Good info on the CoughAssist. Wish I’d had one before lung problems almost killed me a few months ago.
For me, drinking a lot of water minimizes dry mouth.
Rick
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WHAT’S NEW WITH YOU?
Isn’t it great to know what other PPS Managers are up to? Every one of us is an expert at perfecting the little things that get us through the day. We’re efficiency experts – or, at least, we try to be.
Years ago, when the PPS Manager newsletter was an infant, I did a column called, “It Works for Me.” We submitted ideas for little devices, inventions, products, procedures and such, to make our daily tasks easier.
One idea that comes to mind (sorry I don’t remember who sent in the idea and I’m too lazy to look it up) is a simple reaching aid made of a 3/8” wood dowel with a cup hook on one end and a rubber tip on the other end. It was cheap and easy to make and I use it almost every day right here at my desk.
Most effort-saving ideas involve a very simple procedure. It might seem like nothing to you, but maybe there’s someone out there who never thought about it.
The next time you notice yourself doing one of those little things or when something new makes a difference, please take a moment to write, email, or call-in your idea.
Remember, we’re in this together.
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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 proof reading and attaching the labels. Ann Howell for your graphics expertise. Thanks to Westside PPSG, John Kirkpatrick, William Wells, Caroline Roddy & Barbara Randolph, Ed & Betty Waiswilos, and Mayr Brennen. 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 give financial help
Make check payable to:
RE Van Der Linden
34711 Lyn Ave
Hemet, CA 92545
To submit ideas, writings, or commentary, write to above address, E-mail ppsman@adelphia.net,
or call Rick at (951) 926-5492
Information contained in this newsletter
is not intended to be a substitute for professional medical care.