In this Issue:
Post Holliday Muscle ReassessmentBy Gladys Swensrud
Letters and much more…
Meeting reports:
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FROM THE EDITOR
Hi Fellow PPS Manager,
The holiday season is over – the party’s over – and we’re left to face what is, historically, the coldest time of year. We’ve fattened ourselves up for the long, dark days of winter when we can hibernate under a warm blanket while reading, watching TV, talking on the phone, napping, or, better yet, doing nothing.
It’s a time for recovering from too much holiday activity, too much food, too much of everything. It’s time to take time. If it doesn’t absolutely have to be done, don’t do it. You’ve got better things to do – nothing. Yes, doing nothing is an important activity for a PPS manager. A hard job, but somebody has to do it.
You might be tempted to think about how 2007 went for you and what you might want to change for 2008. Not a good idea. That would be too much like actually doing something. You need a few weeks off, maybe a whole month.
Yet here I sit doing something – all talk and no action, you say. But this is something that really needs doing, this newsletter. But just to show the best of intentions, I put it off as long as possible.
Have fun .... Rick
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Post Holiday Muscle Reassessment
By Gladys Swensrud
With the hubbub of Christmas behind me, I welcomed in the New Year by rising bright and early on Tuesday, January 1, 2008. Of course, I found soaring with the eagles at 5:00am that morning easy because I had fallen asleep at my normal 9:00pm bedtime hour on New Year’s Eve, completely missing the 12:00am ball drop at Times Square.
I am tickled by past memories of staying up late, clinking glasses of sparkling cider with friends and loved ones at the stroke of midnight to toast in the New Year. We always shared our personal thoughts and aspirations of what we hoped the New Year would bring to our lives. And although I still lay out a “plan” for the New Year, suffice it to say these days I prepare it far in advance of the traditional midnight celebration.
I greeted this New Year with fresh optimism! Hope springs eternal that something will occur in 2008 to bring a better balance between living with PPS and just plain living. If maintaining a positive attitude can make a difference, then I have a head start. But my first priority will be to sit down and get my personal approach to correct muscle care back on track.
One would think in Year 8 of living with Post-Polio Syndrome that I would be wiser about muscle overuse. However, with my Thanksgiving turkey carcass just barely picked clean, I, like everyone else, quickly fell prey to the trappings of holiday preparations. I stoked my internal PPS engine to my new full steam ahead, and I forged a path through December that was so challenging, it would have made Santa’s beard curl from stress. Now, with holiday wrapping paper and our tree securely tucked away in their respective recycle bins, it is time to switch my focus back to conserving my own natural resource, my limited daily muscle strength.
In retrospect, it fascinated me how easily I was lured this year into overusing my reserves. Perhaps I had done such a good job managing overuse that in time I found it easy to forget the negative impact abuse can have. The opportunity to have fun and stretch the limits of established boundaries found me pushing myself further than I ordinarily would.
I love all the customary trappings of Christmas and Hanukkah: I enjoy my family traditions, like making and frosting butter cookies with the kids; I want our home to be warmed by the laughter of visiting loved ones. I relish having the house decorated inside and out. And I want the feeling of goodness and joy, which giving to others during the holidays creates. But going and doing certainly left me vulnerable to overuse.
Because it feels good to be a part of holiday festivities, it is easy to get wrapped up in the excitement and neglect good muscle use practices, which we strive to follow throughout the rest of the year. Throwing caution to the wind, and pushing beyond our limits throws the body out of kilter, adding to pain and fatigue, and making life in general much harder to navigate. But getting back on track can be as easy as readjusting our mindset. Merely taking a few extra moments in the New Year to stop and reassess has the potential to correct the temporary holiday derailment and put things back on the right course.
Happy 2008…and best of luck with muscle preservation the New Year through.
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MEETING REPORTS
Featured at our November 10, 2007 Meeting were Dane Holderman and Melanie Arledge from Progressive Medical. They presented a slide presentation on breathing issues for polio survivors especially all of those who suffer from sleeping disorders. This was of particular interest in light of the current smoky conditions resulting from the recent fires in the San Diego area.
They first discussed the various types of Sleep Disordered Breathing starting with Obstructive Sleep Apnea versus Central Sleep Apnea. They explained the physiological differences of OSA and CSA. A visual slide of the upper airway showed the various tissues that collapse when the patient falls asleep; known as OSA. Another visual slide showed where the drive to breathe initiates, in the primitive portion of our brain known as the Medulla Oblongata. The lack of the brain firing the signal to breathe; is known as CSA. There are only 3 known reasons why a person would exhibit CSA: either the person was born without an inherent drive to breathe but survived infancy, or a head injury has occurred, or there is cardiac involvement. The main topic of the discussion centered around Neuromuscular breathing or lack of. Visual slides showed the Respiratory Muscles that relax and contract while we breathe, known as the Diaphragm and the Intercostal Muscles. Post Polio Syndrome, a progressive neuromuscular disorder, can causes diminishing strength of these muscles, leading to the need for a ventilator (normally used overnight) to assist breathing.
Significant time was spent explaining the misdiagnosis of sleep disorders in the neuromuscular (NM) patient and how to go about evaluating this community appropriately for breathing disorders.
The most accurate evaluation of a neuromuscular breathing disorder is to perform a breathing test known as Pulmonary Function Testing (PFT), and the capture of End Tidal CO2 all done while the patient is lying down, without the aid of gravity. If the patient fails the testing, the patient qualifies for Non-Invasive Ventilation.
Dane demonstrated the use of the Spirometer by testing Melanie’s Pulmonary Functions. Two simple tests were performed. First he asked Melanie to inhale as deeply as she could using a MIP (maximal inspiratory pressure) gauge, showing her ability to breathe in. Next Dane asked for Melanie to exhale for a FVC (Forced Vital Capacity) using the spirometer, to show her ability to exhale. All respiratory measuring devices are calibrated to manufacturers specifications governed by the FDA.
Melanie announced the news that Progressive Medical is the only Home Respiratory Company winning the honors of Accreditation for 3 years in this region. They are one of sixteen companies across the United States specializing in Neuromuscular Ventilation. Making Progressive Medical a premiere respiratory company.
Next they explained the advantages and differences in the types of devices used to support breathing. Dane discussed that CPAP and/or a Bilevel S devices are used to splint the airway open in the Obstructive Sleep Apnea patient only. These devices can not support weaken respiratory muscles found in progressive neuromuscular patients or aide in Central Sleep Apnea which is the lack of the firing mechanism in the brain. Non-invasive Ventilation is the device required to “give breath” to CSA and NM patients. When there is an absence of breath either from lack of muscle movement or non-firing of the brain, the Non-invasive Ventilator kicks in and gives a breath to patient, washing out retained CO2 and supporting the proper oxygen level. Dane was very clear that oxygen alone is not appropriate to support ventilation. Oxygen alone, without a form of ventilation increases CO2 levels further compounding the patients’ condition.
They also discussed the differences in the Non-invasive Ventilators (NIV) from Manufacturer to Manufacturer. In an effort to follow a progressive neuromuscular patient and prove efficacy, the NIV device should be able to record real time showing various types of data the most important data are the Spontaneous Breaths, this shows how many breaths the patient is able to initiate and how many breaths the device breathed for them. Many of these devices have the ability to record and store data up to 365 days. This allows the clinician to monitor the progress or set back of their clients. All devices should have a heated humidifier to aide in lessening mucosal swelling and moistening the air being introduced to our lungs. Depending on whether the patient is a mouth or nose breather there are various types of masks and pillow interfaces. The presentation lasted more than an hour and the members were exposed to a lot of the process in determining what type of sleeping problems they might encounter.
Melanie and Dane stressed the importance of pulmonary function tests (PFTs) and benchmarking your progress yearly. Progressive Medical offers free evaluations. They stated if you are interested in taking them up on their offer, they simply need a prescription from your current doctor allowing the evaluation. The script should request “Pulmonary Evaluation of Post Polio Patient”. Please inform your doctor these are free of charge to you.
It was interesting to learn that approximately 50% of diabetes patients suffer from some sort of sleep apneas. There are a number of studies currently being done on the benefits on sleep therapy and the reduction of blood sugars in diabetic patients. Dane explained the action of metabolism during sleep and its effect on blood sugar reduction in these studies.
Following this presentation, there was much discussion (for another hour and a half) between the members and our speakers about many of their experiences and getting answers to their questions and experiences.
Rick Kneeshaw described his recent activities with the Legal Foundation up in Los Angeles and a presentation he made to the Loyola School of Law in Los Angeles.
Don Baisch substituted for Gladys Swensrud and presented the results and achievements from the Kaiser San Diego Neuromuscular Sleep Lab
We welcomed a number of new PPS people to our meeting.
The Respect-ABILITY Conference has been Re-Scheduled to March 8-9, 2008
-- November report submitted by Don Baisch
December Party:
The Christmas party was a great success in the tradition started by Judy Sander many years ago. Food, gift exchange, music, conversation, and fun.
For the January 12 meeting, our own Steve Goldman will be our guest speaker. Steve will be presenting his annual "What Works for You" presentation. Be sure to bring along items and ideas you've discovered in the last year that can benefit polio survivors.
-- Rick K.
___The next San Diego meeting:___
January 12
_______________________________
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 858-566-4016 or email piecon@mindspring.com
Or go to http://polio.home.mindspring.com
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As I write this with 2007 coming to and end, the television weatherman says; “We finally have enjoyed 3+ inches of rain is year.” I did enjoy the November 31 rain that came down all day. We desperately needed the rain and I had planned to stay home anyway. I enjoyed watching the rain from inside my warm house.
This will be our first scribe for PPS manager 2008 also reminding me our Coachella Valley Post Polio support group is nineteen years old. In 1989, the San Bernardino Easter Seals organization sent their vice president; Bob Miller, out to organize our group. In a bank on Monroe and Highway 111 in Indio, the first eager group gathered to learn and to share about post polio.
Through the years we moved from Indio to the Joselyn senior center and then to the Portola community center both in Palm Desert where we still meet today. Over the years Bob Miller and Easter Seals furnished space in their newsletter for PPS groups. Somewhere through those years Easer Seals support slowed and we were on our own and the Post Polio Manager emerged.
In the early days our group often traveled to San Bernardino to hear Dr. Jacqueline Perry among others speak, we even made it to a Post Polio Conference near the John Wayne airport in Orange County that was really informative. So many memories and good friends have been made along the way. We do have a few of the original members on our membership list; Ray Croteau, Linda Dempster, Barbara Hall, Ms. T. Imschvweiler, Lois Jackman (Yes, I Can), Emmett Passow and Fran Villa. If I missed anyone my apologies; our current membership list is nearly 100 strong, we don’t make every meeting but, we do the best we can.
As our January meeting approaches I remind and invite you to attend as we have a special guest speaker: Melanie Arledge, from Progressive Medical the topic will be “Breathing problems and help available to those of us that need assistance.”
We have also been invited to participate with the Orange County post polio support group in February their guest speaker will be: Carol Vandenakker, MD she is the Assistant Clinical Professor, Residency Director and Director of Post-Polio Clinic in Physical Medicine and Rehabilitation USC Davis Medical Center
In closing we hope 2008 brings health and happiness to all.
Thanks, Barbara Hall
_____The next meetings:_____
January 11
February 8
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2nd Fridays at 10 AM at Portola Community Center, 45-480 Portola Ave, Palm Desert CA Park in rear.
For information, contact Joe Camaya stan-n-ollie@msn.com, (760) 365-3587
or Barbara Hall whall233@aol.com, (760) 329-9593
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______The next meeting:______
February 12
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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.
We had another great Christmas party. It seems we forgot about PPS for a little while and just turned it loose!
Our January meeting may include a visit from Progressive Medical’s Melanie Aldridge. Don’t forget the new day and time. Tuesday at 11 AM.
We’ve learned that long time member Del Kroker came down with pneumonia. After a short recovery she has been moved to an assisted living facility close to her daughter somewhere near Temecula. Please let us know how you’re doing, Del.
Have fun … Rick
_____Our next HAPS meetings are:_____
January 16
February 19
____________________________________
Regular Hemet meetings are at 11 AM to 12:30 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
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The Riverside group had a great party at Judy and Brian’s house. It’s always a warm and friendly atmosphere.
Dale Gerdes was unable to make it because he’s weak from chemotherapy, but the outlook is good.
Betty Waiswilos couldn’t make it either. She had to move to an assisted living facility. You can send her a not at: Shepherd’s Heart, 23823 Cushenbury Drive, Moreno Valley, CA 92553
Betty McFarland hopes to arrange a demonstration of Free Phones for disabled people in need at the February meeting.
____The next Riverside PPSG meeting:____
February 16
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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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We had our annual Christmas meeting on the 11th. of December at Red Lobster. We had over 20 attend and held a gift exchange. A merry time was had by all.
Our January meeting will be held on the third Tuesday, the 15th. The change is for January only. We will have a speaker, Robert Habeger, CPO from Empire Prosthetic & Orthotic Center, Inc, who will talk about the latest advances in orthotics. The location has not been determined yet.
__________Next meetings:___________
January 8
February 12
___________________________________
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
___________Next meeting:____________
Call or write for time and date
___________________________________
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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Thanks.
All the best of wishes to you and yours also for the Holiday season and the coming New Year.
Joe Marsh
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Dear Rick,
You did a GREAT job of incorporating Sunny Rollers letter into your bulletin and surrounding it with a number of positive, upbeat ideas on healthy living practices! Gladys Swensrud's letter helped to frame it - with her comments about you and your contributions, as examples. I felt I knew you better after reading that. I admire you for giving of WHO YOU ARE to others -- including sharing your musical talents. I have a feeling that Sunny would enjoy having a copy of this bulletin. We only have her e-mail address but I'm sure I can get her home address. If you have extra copies, would you mind mailing me one to forward?
Incidentally, thanks to Sandy for all the "behind the scenes" help she must be to you.
And sincere thanks to YOU!!
Beverly McGaugh
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from jenniebedford@telus.ne
Hiya Rick
Just a quick note to say Thank You for another fabulous newsletter. Always upbeat, always something new to "chew on."
Enjoy the Holiday Season when it arrives......and all the best in 2008.
Cheers from the North,
Jennie & Doug
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Dear Rick:
Gladys Swensrud (Sept. '07) was right in that we need to "align ourselves with MS, MD, ALS, etc." to bolster our numbers. What has always worried me, however, are the potentially huge numbers that were never diagnosed with the original polio, and have no idea what is causing their current symptoms.
This was really brought home to me again the other day at Thanksgiving dinner. I was seated across from a woman who'd been a long-time friend of my late sister's, and whom I knew to have many medical problems like those of PPS. Then she spoke of the difficulties she was having with her CPAP - the pressure coming in was too hard to exhale against, making her feel as though she was suffocating. The conversation at that point got very interesting. When I asked if there was any possibility she'd had polio as a child, or just been very, very sick (as polio was often misdiagnosed in those days), she reacted as though I'd just accused her of having head lice. It might not have rung such bells with me if it had been the first time I'd gotten this reaction. From what I've been able to determine "back in the old days" there was among some families a real stigma to having polio - either the idea the house was not kept sufficiently clean, or else polio to a child was some sort of punishment from God for sin in the family.
My older sister told me every child but one in our neighborhood had the same symptoms I had during the same 2 weeks. I was the only one hospitalized and diagnosed via spinal tap, and most of the other kids (who had a different doctor in those long-ago days of house visits) were said to just have "a summer flu". One "flu victim" had to lift one of her legs by hand for most of the following year. A friend of mine in Spain started having leg and foot problems and went to see an orthopedist. After examining him the doctor called his two young nurses in and said "I want you to see this man's feet - this is typical of those who had polio as a child". That was the first my friend had ever heard of the possibility he'd had it.
When he got home he called his very elderly aunt ( his mother was deceased) back here in the States and asked about it. "You were very sick when you were 5, and your mother and I always thought it was polio, and not "flu like the doctor said".
So my own feeling is there are many, many of us out there suffering with PPS and misdiagnosed. The bad part is they're probably being told by their doctors to exercise!
Keep up the good work!
Carolyn Moyer
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Total Knee Replacement (TKR) Discussion
Submitted by Judy Mahoney.
Judy Mahoney wrote:
We have a question – Betty wants to know if any of you polios have had knee or hip replacement, and how you fared. She is concerned that if she has the good knee replaced, for example, the other leg (which is more polio-compromised) will not hold her. Any advice? Want to share your experience?
From: Julie Hatfield
I had a TKR in 2003, I have had no problems other than a little stiffness now and then. I was afraid to have it done, but I needed my good leg to keep me upright for a while longer, so I did it. The therapy afterwards is painful but we all push through it don't we? Water therapy keeps me going these days. Tuesday I will be having a carpel tunnel surgery on my right wrist. The joints just don't last with all the abuse we give them. Anyway, I thought I would share my thoughts. Haven't seen you all in along time. I'm doing well otherwise, hope you all are doing the same.
Regarding Lorraine:
Lorraine had her good knee done first (even though the doctor wanted to do the polio leg first) and had no problem. But we're all different. By the way, Lorraine had the second knee replaced three months later - it was about a year ago, and she's doing great.
[If you have a story to share, please send it in - Rick]
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Hi Rick,
I finally got the VA to take the CPAP and issue me a BiPap, but not a ST. I have an upcoming appt at the sleep clinic at the San Diego VAMC. I used the info from your articles and email suggestions. Please remind me again of the importance of the ST. Also, I have considerable difficulty because of the size of my facial features. The small is too large so they gave me the Petite size and I still have air leaking out. It's fun to be awakened with air blowing in your eyes. I've even tried using a tissue to fill in the gaps. I know they are working with children that have sleep apnea so perhaps they could order a smaller face mask.
Sandi
Hi Sandi,
The bilevel is a big improvement over the CPAP, but the ST adds the extra benefit of jogging you when you fail to start a breath on your own. Such a failure can occur when your brain forgets to send the signal (Central Apnea due to poliovirus damage) or when you are just too tired to start the next breath (a complication of neuromuscular weakness – another PPS symptom) which is linked to hypoventilation. [see the San Diego Meeting Report in this issue]
Your people at VAMC may be reluctant to issue an ST simply because they don't know much about it. If that's the case, you might ask for a ResMed VPAP III ST. Their latest model, called the Activa, is auto-titrating, which means that it sets itself to your needs so your doctor doesn't have to know as much to get it right. Another option is a referral to Progressive Medical, or Kaiser’s new neuromuscular breathing program.
As regards mask fit: I use a ResMed Ultra Mirage. Although I'm a big guy with a big nose (don't laugh :-) a large size covers too much area which makes it leak, so I use the standard size which is kind of small. It would leak and/or have fit problems if I didn't modify it just a little.
I cut a little half-moon out of the underlying, tougher layer so that it doesn't cut into my septum (you know, the thing that separates your nostrils) allowing the mask to ride higher on my nose and therefore seal better at the top. This might also be done in the upper area to allow the mask to sit lower by the eyes. It's important NOT to cut the soft layer that touches your face. I use sharp, pointy scissors to cut with, and a piece of cardboard in between to protect the soft layer.
Straps that are too tight can be worse than straps that are too loose. Routing the tube up, over your pillow (I put a picture in a recent newsletter -- The PPS Manager Newsletter 9/06) allows the mask to follow you without causing leaks.
It's also very important to not let the blowing on your eyes continue, because it can cause ulcers on your eyeballs.
Rick
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Hi Rick!
My name is Walt Balenovich and I had polio when I was 12 weeks old. I received the benefit of much physio over the years as I did not leave hospital in Hamilton, until I was 5 years old. I am a former Easter Seals timmy. I found this email address on the SD Polio website.
I have just completed writing a book called "Travels in a Blue Chair", a series of funny short stories about my travels alone around the world, backpacking in my blue wheelchair.
I feel that this sort of book would be of great benefit for people with polio or disabled children and their friends and families. This book could make a fantastic holiday gift.
A portion of the proceeds from the book sales will be put towards Rotary's Polio eradication program in the Third World.
As you might expect, I am not going to get rich on this book, but am hoping to recover the costs of publishing it. I think it has a positive value.
I was wondering if you would be interested in including it on your website or in your newsletter? For more info, the website is ..
www.bluechairbook.com
You can see a pic of me leaving the hospital on one of the pages. The book is available online only currently.
Thanks and if you need any further info...please do not hesitate to contact me!
...Walt!
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Hi Rick,
Another great newsletter! Thanks for keeping them coming and for you do and for ALL THE GREAT PPS Support groups here in Southern California! We need each other and sometimes, the newsletter is the main source of connecting with other ppser's. At least for me lately, that is true.
Make a Memory!! Linda in Palm Desert
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Hi Rick,
Always enjoy your newsletter. Keep up the good work.
Judy Hoit
Dreams, Inc.
www.dreamsforever.info
Coming Soon!
Mr. Wheelchair America
Please support a great non-profit event
(319) 351-8375
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Hi,
<<please send me information you mentioned on giving nasal oxygen to PPS people.>>
There are many sources of information regarding the downside of PPS people using supplemental oxygen (SO2). I've seen reference to this in a few medical studies, respected books on PPS, and heard first hand information from the experts at Progressive Medical. Doctors Bach, Bruno, Oppenheimer, and Halstead (among others) have spoken out regarding the dangers.
The danger lies in treating neuromuscular hypoventilation (not breathing enough because of weak muscles) with SO2 alone. Without the muscle assistance of the bilevel machine, we don't remove the CO2, so it builds up and, basically, poisons us while the SO2 tells the brain that everything's okay.
On the other hand, SO2 is sometimes necessary when PPS is accompanied by lung disease or heart problems.
Rick
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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 Manageris 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.