September 2009
In this Issue:
PPS Seminar at Casa Colina
Breathing Seminar at Salk Institute
Salk’s New Web Site!
From Ten Year Ago
Letters and much more…
Meeting reports:
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FROM THE EDITOR
Hi Fellow PPS Manager,
The days are getting shorter and cooler. I plan on having more bad days until winter bottoms out and spring starts to bloom. Just getting mentally prepared so I can accept it with calm reserve.
Big news! There are two PPS educational seminars taking place in Southern California just two weeks and two hours apart.
In short, the first seminar at the famous Casa Colina rehab center will focus on general managing of PPS, while the second at The Salk Institute (who doesn’t recognize that name??) will explore breathing issues in PPS and other neuromuscular disorders.
Attend both if you can. Maybe I’ll see you there and shake your hand or give you a hug.
Also in this issue you’ll find some stuff from ten years ago and some very interesting meeting reports and letters. Of special interest are the letters about childhood polio experiences that helped form the PPS person of today. Do you have a story to tell?
Have fun .... Rick
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Managing Symptoms of Post-Polio Syndrome
Please join us for a free presentation and open discussion on October 20th from 6 to 8 p.m. at the nationally renowned Casa Colina Centers for Rehabilitation in Pomona.
Presenters include Dr. Richard Shubin, a board certified neurologist and Kathryn San Martino PT, NCS, CLT, ATP.
The following topics as they relate to post-polio syndrome will be discussed: Medical management, energy conservation, appropriate exercise programs, evaluation and training for orthotics, assistive devices, and wheelchairs. A question and answer session will follow the presentation. Refreshments will be served.
Space is limited so please call to reserve your space today. 866/724-4132 Seminar location: Casa Colina Centers for Rehabilitation, 255 East Bonita Avenue (at Garey), Building 1D, in Pomona, CA. [Click here to download flier in pdf format]
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Keep learning.
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Breathing and Sleep:
Solutions for People with Neuromuscular Disorders
On November 1, 2009, the Salk Institute will host a neuromuscular respiratory symposium for people with neuromuscular disorders including: Post-Polio Syndrome, Amyotrophic Lateral Sclerosis, various Muscular Dystrophies and Multiple Sclerosis. This unique event will be held on the campus of the famous Salk Institute for Biological Studies in scenic La Jolla, California. It is being jointly sponsored by The Salk Institute and ResMed Corporation.
The purpose of this event is multi-fold, but of major importance is:
• To explain to the neuromuscular community what is happening with our muscles, respiratory and other, which is at the root of our breathing issues, and
• How to best approach respiratory problems to help us live a more productive life with the right ventilatory equipment.
Respiratory compromise can be a destructively insidious side effect of living with a motor neuron disease like Post-Polio Syndrome. Survivors, and the physicians who care for us, all too often miss the first subtle signs and symptoms of a neuromuscular respiratory shortfall; if this problem goes undetected, it can slowly rob us of our energy and quality of life.
We have assembled an amazing panel of presenters of national prominence to lay the foundation for a thorough discussion of this complex issue. In the process, we hope to outline step by step: the cause, the effect and several easy to manage solutions to help us achieve improved health through the use of correct ventilatory support.
The Salk Institute has generously offered day-of-event guided tours of their campus for those attending this symposium. It is important to return your registration forms early so we know the numbers of people requiring: handicapped seating accommodations, special needs parking and special tour accommodations. Ample parking is available, with spaces reserved for handicapped access.
Watch your inbox (or for those receiving a snail mail version of the PPS Manager…your mail box) during the next couple of weeks for details and the brochure with a registration form attached. Please Save the Date: November 1, 2009, in your planners and/or calendars, and at the same time make a special note that Daylight Saving Times ends on this date, so we “fall behind” into our winter schedules. Looking forward to seeing you at the Salk Institute!
Register online at http://www.salk.edu/breathingandsleep/
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The Salk Institute Announces New Polio Web Site
August 2009 -- The Salk Institute’s new web site, www.poliotoday.org is now up and running. There you will find a brief history of polio, links to major PPS organizations, and the latest news regarding the fight to end polio worldwide.
Of particular interest to those of us with PPS is the opportunity to share our polio story either in writing, or video. See other people’s stories and learn how to submit your own by visiting http://www.poliotoday.org
The latest release from Mauricio Minotta of The Salk Institute:
PRESS RELEASE 9/1/09
"We have launched the Community section of PolioToday.org, which can be found here: http://poliotoday.ning.com/
"I want to encourage [everyone] to sign up and join in on the discussions. Create new discussion topics if you like, or Groups (perhaps one for musician polio survivors, Rick?) Of course, the discussion forum will be of more value as we get more people to sign up and do the same ...
"Also, we’ve loaded 14 new video segments featuring expert medical opinion/commentary by Dr. Susan Perlman to the site. She’s featured on the home page and also on the Videos page, under the Expert Opinion tab. We’re now working on editing more testimonial videos, as well as Dr. Perry’s video. At the same time, we’re spreading the word on the latest additions to the site on Twitter.
Our next step will be to develop a press release about the site so we can get some media coverage... I’ll keep you posted."
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FROM TEN YEARS AGO
October, 1999 PPS Manager Newsletter
Q&A
When asked if she thinks that the emotional struggle is as great as the physical struggle, Judy Mahoney answered:
“... I believe it is as great as the physical, or even more. Denial is a big factor in not slowing down. It takes very little to push over the edge. All someone has to do is suggest something, and we are eager to do it, although we are already pushing ourselves too much.”
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GET AWAY!
Relaxation is a key component to good health, but the type “A” personality (common to polio survivors) rarely takes a vacation. During my thirty-three year working career my overtime hours greatly exceeded my vacation hours.
Now that I’m “retired” why even bother? Because, my wife Sandy insisted on it. And her logic is indisputable. We have a nice fifth wheel which rarely sees a weekend away, the truck is in good shape, we have the time, family to visit, new sights to see... let’s go!
So we went to Oregon. Fifteen days, two thousand miles. We took Jack the cat and Punkin the dog. We saw trees and lakes and streams and rivers and whales and elk and relatives and it was good. And I know why.
We had our own kitchen, bathroom, TV and bed. I had my easy chair, computer and guitar.We stopped traveling when I got tired and stayed stopped until I got rested. When mountain wildfires smoked up the air and bothered my breathing we moved to a lower elevation two hundred miles away and caught up for a couple of days.
The trip wasn’t without problems, however. Due to brain glitches I almost ran the truck out of oil one time. And then there was the time I almost dropped the fifth wheel because I forgot to put the legs down while disconnecting. And the time I forgot to plug in the breaks and almost started down a steep hill. But, I was relaxed and I took it in stride. No major harm done.
In all, it was a good experience. I managed to relax and face the unknown with the calm assurance that things would work out fine and they did.
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When each day is the same, only one day is lived.
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[Also from 10 years ago: the same old story.]
Dear Editor
Thank you for waking me up. I had no idea what was happening to me... until I talked to you ... and read your newsletter. I feel so much better now that I know what to do. I made an appointment at Rancho Los Amigos and I am applying for SSD.
Thank God I’ve got a chance to get some of my life back.
--- Gloria
[Editor’s note: Like many PPS sufferers Gloria had been treated for the wrong ailment for years]
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MEETING REPORTS
July 11, 2009,
Note taker: Gladys Swensrud
Today offered a unique opportunity for the San Diego Polio Survivor audience to learn…and, at the same time, teach. We were fortunate to have two separate presentations, so we divided up our meeting accordingly.
The first hour’s guest speakers were Johanna and Ben Burhans, the owners of CA Mobility Center located at 1221 Linda Vista Drive, San Marcos, CA, 92078. CA Mobility provides and installs residential elevators, stairway lifts, and porch lifts for mobile homes –equipment for home and commercials use, meeting ADA requirements with both.
Ben organized a very comprehensive power point presentation on the elevator portion of their company, and Johanna followed with a detailed discussion on stair chairs. Before this meeting we might have been confused on how an elevator could be added to an existing residential home, but all our questions had been answered by the conclusion.
Ben’s power point presentation addressed every facet of home elevator construction from planning to installation. He detailed how they decide the best spot to connect an elevator to your existing structure, how they look for clearances to meet permit requirements, and how they address structural concerns. He explained among the many considerations they must take into account are the size of elevator you choose, the orientation of the elevator to best fit the layout of your home, and the interior material choices.
CA Mobility supports its clients each step of the way throughout the construction process, right long with you attending to every detail. They pride themselves in being exclusively a San Diego County company, with the entire focus of their business within our county. That means if you have any construction problems, they are readily available to answer questions and step in to solve them.
The stair chair concept is one with which we were more familiar, and at the same time one that we all suspected was within the realm of affordability for most. Johanna had brought brochures to explain their ease of use and how well they integrate into any two or multi-story structure. She highlighted how stair chairs can be incorporated into even the most limited stairway spaces. And she explained with their use it returns the freedom of having total accessibility to your entire home once again.
The costs of elevator installation can span quite a range, dependent upon your needs and choices. Price is determined by how extensive your plans are, from planning to installation, but as a good rule of thumb the costs range from $25,000 to $80,000. However, the alternative choice of a stair chair can range from $3,700 to $15,000.
As for what to look for in a contractor, Johann and Ben suggested the following as a gauge:
• Make sure they are bonded
• Look for references
• Be certain you are given firm prices and timeframe estimates
• Prior experience is a must
• They should give you specific warranty information and times on all elevators and stair chairs.
On that note, we had two recommendations from members of our own group who personally verified the outstanding work CA Mobility either does or has done in their homes. If you have been thinking of adding either an elevator or stair chair to your house, please contact Johanna and Ben Burhans at: 760-471-4545.
A Visit from The Salk Institute
After a short break, Gladys led off with a quick review of how the Salk Institute had contacted her in mid-April to help organize a meeting between them and local polio survivor group leaders. She reiterated that as a spin off from that meeting, Salk was involved in initiating several interesting projects. And she next introduced our second guest of the morning, Mike Sullivan, who works for the Salk Institute within their audio/visual department.
Mike began by explaining how Salk is in the process of setting up a website (www.poliotoday.org), which, when it goes live sometime in August, will be a great way for survivors of polio to link to information and eventually also serve as a reference point to connect with one another. He noted that this website will be driven by the content that comes from within our post-polio community, and he encouraged polio survivors to use the website’s tools as a way to organize meetings and reach more people.
Mr. Sullivan further clarified that the Salk Institute was in the process of collecting video stories about survivors of polio, and they welcomed contact from those of us who might be interested in sharing our experiences. He also added that Gladys had already completed a portion of her filming, and he was visiting our meeting to do another short segment. Mike encouraged others to feel free to contact him. If you would like to share your story, he can be reached for questions at: msullivan@salk.edu.
To give Mike an idea of how we generally open our meetings, each person in attendance was asked to give the following:
• Your Name
• Date you contracted polio
• Where you lived when you contracted it
• One or two word description of how polio changed your life
As we would suspect, the answers varied, but a few themes resurfaced again and again. Polio survivors are very strong (and often strong willed) individuals, probably a result of battling a major illness and living to tell about it, often against great odds. We are motivated to succeed and often display the typical Type A personality traits. We are frustrated to once again be sidelined by the ravages of an old disease. We are realistic about our present decline and where the future will lead. Most of all we haven’t given up hope that a solution can be found, even if only as a byproduct of research being done on other diseases.
Be watching for the Salk Institute’s website to go live. We will keep you posted as information is available.
Let’s Party!
Mike Blazick related at the meeting that he and Diane wanted to have a PPS picnic before the summer is out. The group voted on September 13th. The location is the usual place: Mission Bay Park, De Anza Cove. From Interstate 5, take the Clairmont exit and go west. Turn right at the Visitor Center on E. Mission Bay Dr. Go to the end and turn left at De Anza Road. Park anywhere you can.
For further picnic details contact Mike email mlblazick@hotmail.com
Special Guest Speaker
We are very pleased to announce that Dr. Jim Marino, a noted local orthopedic surgeon, and a polio survivor himself, will be our guest speaker at the September 12th meeting. Dr. Marino is an excellent speaker, and certainly someone who understands what it's like to be dealing with post polio syndrome.
Don't forget to save the date. You won't want to miss this meeting.
___The next San Diego meeting:___
September 12 - Dr. Marino
September 13 - Picnic
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Regular meetings are at 10 AM on the second Saturday of odd numbered months at:
Kaiser Permanente 4647 Zion Avenue San Diego, CA 92120.
For more information call Rick Kneeshaw email piecon@mindspring.com
Or go to http://polio.home.mindspring.com
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Contact Rick at this newsletter if you would like to be involved with the Low Desert PPS group. The group traditionally starts up in the fall.
_____The next meetings:_____
?
____________________________
2nd Fridays at 10 AM at Portola Community Center
45-480 Portola Ave, Palm Desert CA Park in rear.
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By Marilyn Loba
On August 11th,
Dr. Bradley Schnierow joined us for a discussion about sleep disorders. He began with a discussion about the lack of recognition about PPS in the medical community. Experts in the field were discussed including Dr. Bruno (east coast), Dr. Pearlman at UCLA (no longer seeing new PPS patients) and Dr. Moreta Sainz.
There is a paradigm shift in sleep orders. When properly treated, the patient should get better immediately with the correct treatment. The drug, Xyrem, which can allow refreshing sleep. It is most often given to fibromyalgia patients although only 20% of these patients will get the drug.
Two books were discussed, Chi Walking and Chi Running by Danny Dreyer. However, because PPS patients must be careful about overusing our muscles, care must be taken when considering any new exercise program.
Sleep apnea is caused by muscle relaxation. Because humans walk on two legs rather than four, there is naturally a bend in the airway. Talking causes a thickening of the tongue in about the same place, which may cause breathing problems. These problems are first apparent in the sleep cycle. One of the first signs of a sleep disorder is when you can fall asleep anywhere at any time. A good night’s sleep can act like an analgesic, breaking the cycle of pain. This is why less pain medication is needed after the sleep disorder is properly treated.
The drug Xyrem has been controversial. Being a form of GHA, which was thought to be a date rape drug, there was concern. However, there is no amnesia with use of Xyrem, which makes it useless for that purpose. The patient can be mobile although dizziness and nausea are some of its side effects. Others include high sodium and it is a muscle relaxant. It should be taken lying down on an empty stomach and the patient should remain lying down for two hours to reduce the incidence of side effects. Muscle builders also abused a form of the drug. Instead of using it only for restorative sleep in small doses, they used it all day long at frequent intervals. After building a tolerance to the drug, they would need more and more. However, the drug should be submitted to the FDA for approval in the fall because it makes a very powerful difference to the pain and sleep disorders. It was shown to be an effective treatment when used in proper doses.
Young children release growth hormone by the pituitary gland during slow wave (delta) sleep. They wake the next day alert and ready for the day. Delta sleep decreases with age. This is why older people seem to need less sleep. However, an increase in delta sleep could reduce the aging process. Short sleep patterns are considered to be four hours or less.
Breathing machines can reduce the incidence of sleep apnea. The best machines include humidified heated air. CPAP [not recommended for PPS patients] is constant air pressure. BIPAP machines have inhalation/exhalation settings. These machines are now more adaptive to the differences in the breathing pattern. Heated tubing is also now available which delivers warm air to the mask. Many types of masks are also available so that each patient should be able to find one that is comfortable.
We wish to thank Dr. Schnierow for his constant support to our support group. Our October 13th meeting will welcome Dr Pietrek DC who is a doctor of chiropractic medicine who is currently treating several PPS patients.
Our December 15th meeting will be a group discussion and Christmas party.
______The next meeting:______
October 13
____________________________
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.
In July, we had a fun party instead of a meeting. We had plenty of good food and friendship at Valley Wide Recreation. As usual, the room was cool and comfortable. Folks seemed to appreciate the music of Rick’s new band, Biscuit Hill - (www.biscuithillband.com)
8/18/09
Jennifer Trebler of Ramona VNA & Hospice was our guest speaker thanks to the efforts of Glenda Layton.
Jennifer, a member of the Healthy Elder Life Program (H.E.L.P.), walked us through their Senior Resource and Benefit Packet – 40 some pages describing services offered by Ramona VNA & Hospice, Riverside County, and local business. Services are free, or covered by Medicare or other forms of insurance, and some are home services offered for a fee by small private businesses. All services are approved by Ramona VNA.
One such service is a free diabetes clinic every Friday. In Hemet call 658-9288.
In the packet are pages containing advice on how to avoid falls, how to choose a nursing facility, choosing in-home care over a facility, benefits for veterans, getting help with your pets, disaster supplies, Edison power programs for homebound people, grief counseling, the need for and details of an advanced directive, and end of life counseling.
The presentation filled one and a half hours, so it would be difficult to cover all the details in this report. Jennifer is one of 5 H.E.L.P. workers in the greater Hemet and Sun City area who can deliver the Benefit Packet to your home and help you with the details.
For help with these and more issues involving aging, homebound help problems, and more, contact Healthy Elder Life Program (H.E.L.P.) by calling 888-983-5337 Mon. thru Fri., 8 am to 4:30 pm, email info@help4elders.info, or visit www.help4elders.info
Glenda also reports that if you need to use public transportation from or around the San Jacinto Valley:
*
Dial-a-Ride $4.00 one-way. Call 3 days in advance (800) 795-7887. They take scooters, wheelchairs, etc. Pickup based on 30-minute window, not very prompt.
* Caravan. Local. 791-3572. $2.00 one-way. Wheelchairs, but no scooters or power-chairs. Pickup dependable per your schedule. Good for going to Walmart , use Walmart scooter for shopping, groceries, everything.
Have fun … Rick
_____Our next HAPS meetings are:_____
September 15
October 20
____________________________________
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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Several of our regulars were unable to attend – and we missed you! Thai joined us for the first time. He got polio in 1978 at age 9 months before his family was able to leave South Vietnam.
He was interested to meet people who had had polio years ago, and asked a lot of questions. We gave him Dr. Bruno's book, The Polio Paradox, and some DVD’s on PPS and polio.
Dorothy and Harry Cutting came - first time in a few years. Both his parents were blind, and lived amazing lives. His father was in Ripley's Believe It or Not in 1952 as the only blind commercial diver on record at the time. He let nothing hinder him. http://www.geocities.com/riptide_bars/BertCutting/bertcutting.html
That “nothing hinder” attitude characterizes many polios – as we can well attest – and is the American spirit we expect of ourselves. But as we have had to concede, that attitude that helped us overcome polio weakness in the first place is now a threat to our continued mobility. If you read Bert Cutting’s story, you will see his ingenuity in working around his blindness. He didn’t deny his disability, he worked with it. We must do the same.
Thai is in a wheelchair. He said his insurance will not cover a motorized chair because he can use his arms. We cautioned him that insurance and medical professionals are usually resistant to being informed with the facts of the matter. His arms are a valuable resource, and he needs to preserve them by not using them up unnecessarily.
His being in a wheelchair was, we hope, an encouragement to Joe, who has been resisting using a wheelchair (image problems). But looking at Thai, he could see that the chair did not detract a bit from his persona. Thai is strong, magnetic, someone you look up to. It isn't a matter of physical stature, but spirit, personality, character. Joe has all that. But resisting using assistive devices puts him at risk of losing what mobility he has left.
Armando shared some of his career stories, how he managed in the military service in spite of polio pain and weakness. He learned to get himself into leadership positions that allowed him less physically demanding jobs. This skill carried through in life. “Everyone’s polio experience is different,” he said, pointing out that one of the values of our meetings is what we can learn from each other.
On the business side of things, Betty urged that we require an RSVP when we are going to have a potluck – for our summer barbecue as well as for our holiday party in December. It’s hard to know how much food to buy and prepare. For those who have email, all it takes is a simple “reply” to RSVP. Next meetings October 17, and Christmas Party December 19.
____The next Riverside PPSG meeting:____
October 17
______________________________________
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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Since there were no meetings in July and August, there's nothing to report.
__________Next meetings:___________
September 9
October 14
___________________________________
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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The Board of Polio Survivors Plus will host a pool-side barbecue on Saturday, September 5, 2009, to celebrate polio survivors and nine years of supporting each other with the challenges of PPS. Come to enjoy a scrumptious menu, live music and good company. Save-the-date and join us with your RSVP Maliebchen@aol.com or call (714) 639-7497
Sue Lau
___________Next meeting:____________
September 5
Pool-side Celebration!
___________________________________
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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Dear Rick,
Many thanks for your good work putting this letter out. A check is on the way to help. I am, at last, able to contribute a little to keep you going.
Now a question for all PPSers: I have been experiencing additional problems with my eyes, blurry and not able to read signs on the T.V. Several years ago my Ophthalmologist said I had cataracts caused by too much sun when I was younger, but when they got bad enough so that my glasses would not correct them, she would do cataract surgery and I would "be surprised by how much my sight would improve!"
I would like input from other PPSers who might have had sight problems, had cataract surgery, or not. I do not want to undergo any surgery if there are other solutions. I know how much risk we run with medical people not understanding or taking our unique problems seriously. I feel very lucky not to have been killed before this by unknowing medical personnel! For cervical cancer alone...I went under anesthetic 6 times...and this is before I was diagnosed with PPS. Although the trauma associated with the cancer treatment may have accelerated the PPS, as I experienced a rapid onset of pain and fatigue after the cancer treatment, and was diagnosed shortly thereafter as having PPS.
I am now very reluctant to have procedures of any kind without thoroughly researching any possible problems being PPS might pose. For example, I had to have two teeth extracted last year, I went to an oral surgeon and had two consultations with him, giving him excerpts from Dr. Bruno's book to read. Even though he experienced problems (an abscess on the bone under one tooth) he was prepared and I did not have swelling or soreness after a couple of days. However, last month I had a root canal done, went to a non-medical dentist, who did not listen to what I told him about PPS and I ended up with a post operative abscess, a swollen face and endured a week of Cindamycin...very hard on my already compromised, PPS and post-cancer, digestive system.
WARNING PPSers, some medical personnel are hazardous to our health!!! Be careful.
Thanks Rick for allowing me to ask questions and vent!
Regards, Elizabeth Gerdes
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PTSD Revisited
Hi Rick,
You so generously send me the newsletter even though I have never been able to make it to a meeting. Right now I have a broken kneecap and will be in a splint for a few month.
Anyway, back to PTSD. Every time I hear a loud noise, I jump. Not very high of course. LOL. Whenever I hear people arguing, again the PTSD kicks in. It started in the 80's and I had polio in '49, so I don't see the connection. But several things I thought I had out grown have returned so maybe it is from repressed memories of that time.
Sylvia Smith San Berdu
Hi Sylvia.
The main reason I keep writing the newsletter is for PPS folks like yourself (something in the range of 80% of the folks) who can’t get to the meetings.
Funny you should mention being jumpy. A few years ago I was a lot jumpier than I am now. I’d forgotten all about it.
Thinking back on it, I would be concentrating on something and my wife would come up behind me and say something and I would practically go into spasms and fall on the floor. I’d be in pain for hours, even days from the stress. I wasn’t like that before PPS, and haven’t been like that [well, not as bad] since I started using overnight ventilation. Maybe it has something to do with hypoventilation and the buildup of C02 in the brain?
Rick
--
Hi Rick,
[I’m] very interested in the new machine .. what do you think?
Ann
[Ann is referring to the latest generation of bilevel ST breathing assistance machines. They are designed to operate more like the volume vents used by full-time vent users with a special new feature. They automatically adjust to the user’s breathing requirements.]
Hi Ann,
The new machine is aimed at delivering an automatically adjusted volume (assured volume) of air per minute which means it’s a “volume first, IPAP second” approach which I kind of disagree with. [IPAP is the air pressure setting that actually does the job of supporting polio weakened breathing muscles.]
Those of us with older, manually adjusted machines who are wise enough to know what we need are able to set the IPAP at our minimum requirement and use the timed functions to control volume. This allows us to get no more support than we absolutely need. The end result, over time, is that we are less likely to suffer atrophy of the breathing muscles thereby forcing us to “graduate” to an invasive trache and/or full time vent perhaps years before it may otherwise have been necessary - if at all.
On the other hand, first-time users of the new generation (automatic) machine report success within the first day or two whereas the previous generation of machines were usually initially set wrong and success was hit and miss – mostly miss. A high percentage of people gave up because of wrong settings. That doesn’t seem to happen with the new, automatic machine.
[Look for more on this subject in a future issue of The PPS Manager]
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“Dead Flies” by Judy Sander triggers memories.
Rick,
Thank you so much for including such a thought-provoking letter as the story of a polio experience -- “Dead Flies.” [refer to PPS Manager July 2009 issue]
I hadn’t thought about those memories of my hospital stay till it jogged my memory. The bedpan issue always seemed a problem, and if the nurses could not get you to go on command.
I got to work for 16 years at a job I just loved before PPS hit in my 50s. Within a year I could no longer remember the X-Ray techniques I had done for years. What a jolt of reality!
Still in all, I did get to enjoy life a lot more because of the determination that all started with that little bag of joy that created a strong will and a positive outlook. In many ways I had a better life due to overcoming Polio.
Thanks for the memories Sincerely Mary Ann Hayes
-
After reading Mary Ann’s story, Judy (author of “Dead Flies) writes:
What a great message this story is! I think all of us that "recovered," had a unique preservation of self. We survived way beyond others with the same amount of disabilities.
I'll always remember that bag of toys.
One time, after I'd returned home to a makeshift bed in the living room, my bird Peachy was in her cage above me to the right. My mother had left me for a while and a farm cat somehow got into the house. The black feline jumped up on the cage, knocking it to the floor. The wooden cage shattered and Peachy was attacked.
I couldn't walk, lift my arms, or my head. Somehow, I rolled over the edge of the sofa bed onto the floor. I slithered forward to the cat and tried to rescue Peachy. Alas, the cat ran away with my feathered friend, leaving only remnants behind.
I lay on the floor for at least an hour. It was "one" of those times in my life I learned that I was alone and that I needed to become strong and never forget that I'd always "really" be alone.
I can also remember trying to reach for water on a tray two feet from my bed in the hospital. I fell onto the floor. The fall left a goose egg bump on my head. One nurse was enraged at me.
I think, this experience, helped me throughout life, to shut out ridiculous/mean behavior by those who covet power, lack empathy or are just plain cruel. Thanks for sharing.
Judy
[Editor’s note: If you have a polio story illustrating your transformation into the classic “A” person you are today, please share it with us.]
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Reminder:
If you move or change your email address, don’t forget to remember 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. 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.