In this Issue:
SDB – Sleep Disordered Breathing by Janet Witworth
Breathing & Sleep 2011 - a free symposium
Letters and much more…
FROM THE EDITOR
Hi Fellow PPS Managers,
It’s been a decade since the twin towers fell. Producing this issue brings back a lot of memories, and provides an opportunity to reflect on the future.
Things change. There’s no getting around it. Sometimes it’s by choice, and sometimes not.
When the towers fell, when my mom died last month, when I got polio … things changed, but not by choice.
But these things can lead to chosen changes. We can choose to adjust, adapt, and rise above.
Ten years ago I chose to not give up. To rise above the sensationalism thrust in my face by the media, often the product of one or more individuals, and concentrate on the upward momentum of one individual at a time, starting with myself.
I encourage you to do the same. First help yourself get right, then help others. And don’t give up.
It’s become a custom lately to include something from the issue of the PPS Manager newsletter published ten years ago. This time I’d rather talk about it.
The two big stories in the September/October 2001 issue were, a short article on the emotional effect of the attack on the Twin Towers, and a report by Mary Clark Atwood on the late Dr. Edward Oppenheimer’s March 2001 presentation, “Assistance for Breathing Problems of Polio Survivors.”
The main point of the Twin Towers article was that we should try to not get so deeply involved in worry and fear that we suffer painful, muscle-tightening stress.
Then, the Atwood article was a very thorough summary of state of the art (in 2001) medical knowledge and technology available regarding PPS breathing problems as presented by, in this reporter’s opinion, the best PPS “lung doc” ever, Dr. Oppenheimer.
The article (readers can write for a copy) contained all the information I needed to get started in the right direction, and to share with readers of this publication.
Dr. Oppenheimer retired from the practice of medicine, but continued supporting the PPS community (myself included) via email. Then we lost him in 2005. I consider myself one of his humble disciples, carrying on his work.
Dr. Oppenieimer’s 2001 presentation included information on the treatment of PPS via bilevel noninvasive support. He also mentioned that the future held the possibility of a machine that would automatically adjust to the patient’s needs. That dream came true then faded away as the preset bilevel ST became today’s standard.
I still feel guided by the great Dr. O as I work to help my fellow PPS folks breathe better. Dr. O advised me to advocate for myself, to take control because nobody is going to do it for me. I’ve learned from others and from experience, and I’ve worked to pass that information along to others.
Roughly half of the folks in breathing distress accept help. The other half have been receiving the wrong treatment from their doctor so long that they don’t know how to get out of the rut created by drugs, CPAP, and supplemental oxygen.
Still, the first requirement to sustaining life is breathing in and out, and that’s something most of us find challenging without mechanical help.
The following article was written by someone whose doctor told her that she would have to be on supplemental O2 for the rest of her life, and that a “BiPAP” machine can’t help remove CO2 from your system. Following the guidelines of Dr. Oppenheimer and one of his disciples, she proved her doctor wrong and changed her life.
Janet is a fine example of the right way to do it.
Rick Van Der Linden
Polio survivors often experience SDB because they have weak breathing muscles. Frequently when they visit the doctor complaining of fatigue a sleep study reveals sleep apnea. This is a condition where a person stops breathing for a short while and then they wake and start breathing again but they may not realize that they are doing this because usually they do not awaken fully. In the morning they do not feel rested.
Sleep Apnea is a common medical condition. Usually patents with this condition are over weight but not always. During REM sleep our bodies are paralyzed and if we have diaphragm or upper chest muscle weakness we may experience hypoventilation. This is breathing so shallow one is hardly getting any oxygen. Over time this causes carbon dioxide to build up in the body, which can lead to very negative problems in the body especially the heart and the brain.
Doctors usually prescribe a CPAP machine to treat sleep apnea. The patient wears a mask connected by a hose to the CPAP machine, which provides a continuous air pressure (determined by a sleep study) to prevent soft tissue closing the airway. Once patients adapt to the equipment they notice they are refreshed and feel better. The pressure may be changed over time as the condition changes. Now Auto machines are pretty popular because the patient receives the pressure they seem to need and this makes the equipment more comfortable. Treatment does not require close monitoring by the clinicians and when downloads are done they mainly focus on mask leaks and hours of use. If the patient experiences a high percentage of mask leaks then the fit should be checked. It may just require straps be adjusted, or perhaps a different brand or style of mask should be tried. Typically there is the nose mask, nose pillow mask and the full-face mask, which covers the mouth as well as the nose.
Polio survivors are not successfully treated with the CPAP machine because their weak breathing muscles make it hard for them to exhale against the continuous air pressure. Post polio survivors with SDB should be treated with a bi-level VPAP ST, which provides two pressures: one higher to help inflate the lungs and one lower to enable the patient to exhale more easily. There is no cure for post polio syndrome – the best treatment is to try to rest the part of the body affected and eat a protein rich diet in the first half of the day to feed the weakened muscles. (No pumping iron – the muscles are breaking down from overuse so PPS patents need to reserve the strength they still have.) Focusing on SDB it would seem then that the bi-level machine settings are critical for restful sleep.
If neuromuscular patients have difficulty exhaling against pressure one might wonder why the bi-level machine does not go to zero. The reason is that some air has to flow to clear the air or the patient may breathe in the air they just exhaled. However, there is now a more sophisticated machine [at about 10 times the cost – ed] that does allow an EPAP setting of zero that has two tubes going to the mask. It is a volume ventilator and has many more features than the ResMed VPAP ST.
Carbon dioxide levels should not be above 45. A blood gas draw is required to test for one’s carbon dioxide level. This test is usually done in a hospital because the technician needs to draw from an artery in the wrist. Oxygen level tests can be part of this blood test but it is much easier to test for oxygen level with a finger monitor. I believe that as the oxygen level goes down the carbon level may also be going up. If supplemental oxygen is added the patient’s impulse to breathe more deeply is suppressed and consequently the blood gas levels continue to go in the wrong direction. Hypoventilation needs to be treated with the bi-level machine set to encourage better ventilation while resting the patient during sleep.
It is important to have a pulmonologist who knows [that] the treatment for patients with weak breathing muscles may differ from those with lung disease. My doctor was willing to tweak the setting on the bi-level equipment to gently increase the IPAP and lower the EPAP to the lowest setting to provide a wider spread, thus allowing a deeper breath in and ability to fully exhale. Over-night oximetry tests were run to check oxygen levels with and without supplemental oxygen and a follow up with a blood gas test can determine the C02 level.
Supplemental oxygen may still be required for people with weak breathing muscles in certain circumstances. One example would be when flying. Oxygen levels are at about 80% of normal air, which is adequate for normal breathing at rest but not sufficient for a person with weak breathing muscles. Passengers requiring supplemental O2 help need to take their own pre-approved battery operated portable oxygen generator with them, or for some longer flights arrange on-board oxygen with the airline.
I would like to give credit for this article to personal web research and experimentation, the support of Group Health and Apria, and to some very special polio friends namely: Hilary Boone, Gladys Swensrud and most of all Rick Van Der Linden.
Contact Janet at firstname.lastname@example.org
The hurrier I go,
a free symposium
Angela King, BS, RPFT, RRT-NPS
Rick Van Der Linden
• Dr. Han, a distinguished physician and polio survivor from China will share the history of polio in China and current Chinese treatment methods for polio survivors.
• Vendors with relevant, innovative products will display their specialties.
• CEUs will be offered for qualified
Registration available online at
Joshua Benditt, MD, FCCP
Anthony N. DeMaria, MD
Fang Han, MD
Angela King, BS, RPFT, RRT-NPS
Karyl Scott, RRT
Special thanks to...
More and more attention is being focused on the long-term consequences of Sleep Disordered Breathing (SDB). Daytime indicators of a potential nighttime problem, such as: excessive daytime sleepiness, low energy level and lack of clarity of thought, are often early signals of a serious sleep related issue.
Recent research findings suggest that Sleep Disordered Breathing is likely to be a risk factor for pulmonary hypertension and consequent cardiac involvement.
The Breathing & Sleep free symposium’s objectives will identify:
• How Obstructive Sleep Apnea/Central
9:00 - 9:30 am Registration
12:15 – 1:05 pm Anthony DeMaria, MD
Programs will be available at the symposium.
For more information visit http://poliotoday.org/breathingandsleep2011
___The next San Diego meetings:___
Contact Rick at this newsletter if you would like to be involved with the Low Desert PPS group.
_____The next meetings:_____
We had a small meeting as sometimes happens in the summer, but we had a new polio survivor and had a nice discussion before our speaker. Our speaker was Joe Wiendl from Ability Access LLC. He came to demonstrate the Port-a-lift, which is available through Ability Access. The Port-a-lift can mount just about anywhere with a small mounting bracket. It can hook up to a vehicle’s 12-volt battery or can use household current which has been adjusted for the unit. It can also be run on battery power. It can be mounted to a wall or floor and pivots so it can go around a corner. The heaviest part of the lift is 18 pounds and it can lift someone weighing up to 300 pounds. It can be mounted on vehicles as small as a mini cooper or as large as a semi truck. It can be used in even a small bathroom to lift the patient into and out of a bathtub. In a bedroom, it can transfer to and from the bed to the wheelchair. This product is proudly made in the USA,
We then went outside to the patio benches where Joe demonstrated how to use the Port-a-lift to get into a pick up truck. Charlie tried it out and said it was very comfortable and secure. The sling is easily attached and removed from a seated position. One unit can be used in multiple areas by simply purchasing additional mounting brackets.
Joe’s presentation was very informative and entertaining. He is available to come to other groups for a presentation. We thank him for taking time to show us this new product to make our lives easier.
______The next meeting:______
Our summer party was as much fun as usual. Good food, good company, Rick and Sandy sang a few songs – all in air-conditioned comfort. The usual bunch plus a couple showed up constituting about 10% of our local members.
If you are one of the folks who read this report but don’t show up at our meetings and happy little gatherings, I’m telling you, you are really missing out. We laugh and joke and sing. If you think our gatherings are a bunch of sad sacks sitting around feeling sorry for ourselves, you have it all wrong.
The August meeting was a pleasant gathering of just a few regulars. Karen was there again, gathering information for her mother who is aging with the late effects of polio. We’re very proud of Karen.
Have fun, Rick VDL
Judy’s August meeting had to be canceled because she had to take care of her husband, Brian, who had a quadruple bypass.
In her last email, Judy said that Brian was doing well and thanked all the folks for their prayers and support.
Get some rest, Judy, and don’t worry about anybody but you and Brian.
____The next Riverside PPSG meeting:____
Riverside PPSG Meetings: third Saturday of even # months at 11 AM.
For information contact Marsha Hart at email@example.com
NO REPORT FILED
Report submitted by Sue Lau
Mark your calendar to be a guest at Saturday, September 1, 2011 Polio Survivors Plus' Annual Anniversary Pool Party in San Juan Capistrano. Invitations with details will soon be in the mail.
PSP's Board of Directors has promoted the principle of enjoying "each day of one's life" for more than a decade through its Orange County Fair partnership and event. With the OC Fair on July 20th, PSP again provided its members with complimentary admission, parking and no-charge carnival-type rides. The theme was "Let's Eat!" and boy, oh boy, did everyone enjoy this year's treats, which included chef demonstrations, food samplings and even coupons to be used in the near future for free or discounted items. The OC Fair's staff displayed arts and crafts obviously made with lots of thought, creativity and TLC. There were amazing photo exhibits; tempting new products to buy; animals to pet; prized livestock to see; and all kinds of events; not to mention the chef demonstrations with samples and giveaways for the entire audience.
Loving the latest Newsletter and reading it slowly cover to cover! XO
Here is a letter/story I am submitting to you about my surgery to correct my stomach issues (or at least give me relief). I wanted you to see this since it has a lot to do with the breathing issues so many of us face.
Happy summer to you and yours, the time of year when we Polio survivors can rejoice to some extent; well at least the winter weather has passed.
I wanted to tell you once again how much I love and appreciate your newsletter, everything you put into it is an effort and I personally appreciate what you do, Kudos! It’s a wealth of information and you are helping so many people.
Which reminds me, I always look forward to your opening sentence, you always manage to be expressing in words, exactly what I am thinking and feeling and in the back of my mind feeling comforted by you expressing what we are all going through transitioning from winter, spring and finally Summer! The time when the aches and pains are not at a level they were just a few weeks ago.
I wanted to share with you and the other members, my experience with my semi-recent surgery for pulling my stomach up and around my esophagus due to close to 30 years with acid reflux (AR) that was excessive. I still have the AR, I am not sickened by it any longer since having the surgery. It was almost 11 months ago and it has taken me all winter/spring to recover.
The reason I am mentioning this is for other members who are going through a similar experience and might be considering this surgery. It appears there might be some acid reflux problems and gastrointestinal problems with certain PPS survivors.
I have been religiously using my ResMed VPAP ST for 1-1/2 years. I took to it immediately, like a duck in water because… I couldn’t breathe!!!
The mask was never an issue getting used to, the main reason?? I could finally breath and feel better the following day!
So with breathing problems already established prior to the surgery, this surgery actually has made things more of a challenge, maybe not so much now, but in years to come. I have a lot of daytime fatigue since the surgery; I am more labored when I breathe. Other side affects from this procedure are AM sneezing, runny nose, lots of mucus (clear thankfully) because everything has been pushed up.
I have a new opening to my stomach; the opening is held open with an artificial nylon piece. I have to be aware of how large a piece of food is, especially meat, as the opening is smaller now.
I lost 1/5th of my stomach as a result of this surgery. I feel 90% better as far as very little nausea now and little appetite. The surgery might need a tune up in about 10 years, depending on how much the artificial opening gets stretched.
I have noticed a significant decline in my energy and problems with Chronic Fatigue since having this procedure. First of all the breathing problems, then I compound it by having stomach issues and having this done. It was not a choice, I felt really sick for about 2 years prior. I was in a very bad place with the way I felt for so long.
Rick, this surgery is called a Nissen Fundoplasty or Fundoplaction, (Full Stomach Wrap). It will come up on Google.
I wanted to share my story with you and hopefully it might help someone else that is having stomach/digestive issues.
[Then Paula wrote:]
Hi Rick !
Thanks for everything you do!
I also have to swallow with my chin lowered especially since the stomach surgery. I am afraid to either regurgitate or choke so this currently works for me. I have to be careful not to eat too fast, too much or consume too much liquid during eating.
I am thankful for the food I can eat, your article this month on food vs. liquids is, and could be, part of reality for a lot of us.
Excellent article "Staying Alive." [PPS Manager, July 2011 issue] Pretty popular tune in its time too. LOL
You wrote: "… you’re barely able to breathe enough, then you suck food or drink or maybe just saliva into your lungs, start to cough, muscles get weaker, aspirated debris won’t come up." I have sucked saliva into my lungs but could not breathe. With my swallowing problems, I've never been hospitalized-yet.
I almost aspirated a segment of orange when I was alone. I could not swallow it or expel it. I thought I saw my life flashing before my eyes. Obviously somehow I was able to clear the segment but I have never attempted to eat an orange again.
My most recent experience was in May when I took too large of a bite of a deviled egg. I knew it immediately. I eventually was able to swallow it. But this time at the get -together was a nurse practitioner and an EMT/fireman so I was covered if I needed some medical assistance.
I realize I need to eat more slowly and take smaller bites. I've been told by dentists that I have an abundance of saliva.
Thank you so much for this excellent, in depth article which included causes and cures.
A Special Note From Gladys Swensrud
Love you, Rick!!!
You have been my friend and correspondent for a decade.
As you know, my well has finally run dry, so I am, to speak in back country vernacular: "Hanging up my spurs and parking my boots at the door." Just to let others know that as well.
I will elicit Rick Kneeshaw's help in finding someone from the San Diego Polio Survivor group to pick up the slack in writing meeting summaries from our direction. If you are willing to do the lion's share of the work, summary reports are the least the rest of us can do to help contribute to the stellar publication you put together for the masses.
My total appreciation for the years of time you have devoted, information you have researched, articles you have written...all to make life easier for the survivors of polio throughout the U.S. and world!
Your PPS buddy,
You’ve probably done more actual work for the PPS community in the past few years than I’ve done in thirteen. And, the processes you set in motion will go on and on for years to come!
I’m glad you are throwing it out of gear, and taking care of yourself before you wear out completely. You’ve given all a person could be asked to give. Maybe one of these days you’ll be saying the same of me.
In the meantime, we hope to get an update now and then to hear how you are doing.
Your PPS buddy always,
A Letter from Ten Years Ago
Your PPS Manager is greatly appreciated. It is well written and the information practical and usable. I have too much material filed that is written in "doctorese" and leaves you with more questions than answers.
I put together a notebook made up last years PPS Manager and back copies of the Rancho Newsletter. I gave it to our daughter's doctor (Dr. Diamond) when I was in Washington visiting as she had four patients who had had polio.
My daughter called me last week to report that a lady had come into her place of business to say, "thank you to your mother". She was a new patient and was baffled by what was happening to her physically. Dr. Diamond asked her if she was a polio survivor. She said yes, but she had had complete recovery. After a physical check-up, the doctor sent her home with the notebook of newsletters. You can guess the outcome--she found answers on every page!
Best wishes, Virginia Burwell
PS: We are regular supporters of Easter Seals. My experience with them over years is that they are wonderful!
Rick writes in August 2011:
This letter brings many things to mind going back to the beginning of this issue. That is: things that change.
Virginia is no longer with us, but her small, caring acts are still living on today as one doctor and many polio survivors benefit from her reaching out.
Another point: her words, then as now, give me just a few more ounces of energy, and maybe that’s all I needed to get this issue done.
And finally, she mentioned Easter Seals. ES helped me start up the Riverside, California support group. Though they withdrew support a few years thereafter, that group is still functioning today under the leadership of Judy Mahoney
Note: If you would like to receive a reminder each time a new issue of the newsletter is posted, send an email to me asking to be added to my email list.
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. Special thanks to: Emanuel Poznanski, Paula Lambert, Sheryl Smith, Rita & Jay Lack, A. Segal, Dorothy Visnor, and Patrick Keane. Your contributions keep this thing alive.
To offer financial help, submit ideas, writings, or commentary, e-mail Rick at: PPSman@roadrunner.com
Information contained in this newsletter
Copyright 2011, Biscuit Hill WebWorks