In this Issue:
From Ten Years Ago - Physical Therapist Speaks
Dr. Susan Perlman answers your questions
Letters and much more…
Meeting reports:
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FROM THE EDITOR
Hi Fellow PPS Manager,
There’s a lot going on in the PPS world at large. The upcoming Breathing and Sleep gathering at The Salk Institute, and plans are moving forward on the Southern California mission to train Respiratory professionals in the ways of PPS.
Now we can add to that the CREST conference - taking place in Vancouver. Central to that gathering of respiratory professionals (well, WE think it’s important) is the subject of neuromuscular breathing. How do those in need fulfill their most basic need to breathe?
To answer that question and many related issues, Barbara Rogers put together a questionnaire and made it available online. Because of our high degree of self advocacy in regards to PPS breathing management, Barbara interviewed me and Gladys Swensrud as part of her presentation at the CREST event.
There should be plenty to report in the January 2011 issue of the PPS Manager newsletter.
Have fun .... Rick
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[The following article, first published in the December 2000 issue of the PPS Manager newsletter. – Editor]
Dennis Rohrig, PT
11/15/2000, HAPS group, Hemet CA Physical Therapist Dennis Rohrig spoke on "Joint and Muscle Education".
A PT in Hemet since 1977, Dennis Rohrig got some of his early training in the treatment of patients with neurological damage or disorders at Rancho Los Amigos under Dr. Perry.
Mr. Rohrig pointed out that:
1) When a muscle or connecting tissue injury occurs serious disintegration starts after three days, so it's best to see your doctor as soon as possible. A partially torn muscle is very painful, but a compete tear is painless and evidenced by a bulge and/or loss of function.
2) In the case of weak muscles, joints don't stay fully seated and irregular wear is likely. A good PT can not only give you exercises to strengthen suspect muscles, but he can also teach you mobility tricks to help save the joints when muscle strengthening is limited.
3) An OT who is familiar with neuromuscular disorders best treats swallowing problems. There are exercises and techniques that may help.
4) He demonstrated exercises aimed at relieving lower back pain and improving digestion. Included were suggestions for people who spend a lot of time in wheelchairs.
5) Transferring techniques vary depending on which muscles are weak.
6) After fifty years old, the loss of a couple of inches in height is normal. More than that may suggest other problems.
7) Scoliosis usually stops progressing at a certain point. Bracing, casting, and surgery usually produce no overall improvement.
8) While Chiropractors (particularly those trained at the Palmer method) can be helpful, there is a danger of serious damage. A PT can actually teach you to treat yourself.
9) Glucosamine is sometimes helpful in rebuilding the soft tissue between joints. You should talk to your doctor and/or pharmacist about it.
10) Stay with one Pharmacist who knows your history. He can help you avoid bad interactions between your prescription drugs and over-the-counter supplements.
11) DMSO, often used for joint and other problems, increases the incidence of kidney failure ten times.
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I’ve often wondered why I got polio and my three brothers didn’t. I know that I had contracted just about every childhood disease that came along, so I must have had a weak immune system. I had my tonsils removed before I got polio. I wondered if this could be a factor. Doctor Jim Donovan, retired pediatrician and polio survivor says it's not. He also said that it's "rare to see more than one case of polio in [a] family." He went on to explain that each of us has a different "genetic immunity".
At a recent PPS meeting one of the members stated that she thinks she got polio from migrant farm workers - either from the produce they handled or from a contamination of the water supply when a flash flood that carried the virus from the local canyon where they camped. Since she lived in a very small community not far from the Mexico border, and contact with the outside world was minimal, this scenario seems plausible.
Could they have been carrying the virus without being sick? According to Doctor Jim a person can be a carrier - that is, a person who can transmit the disease without having symptoms.
Following the invention of the microscope, people became aware of the "wretched beasties" sharing our world - bacteria were discovered and later viruses was identified. As a result of these discoveries, milk was pasteurized, bacteria were harnessed for the making of wine, and disinfectants were invented. Eventually middle and upper class people sanitized their environment by killing or avoiding contact with many bacteria and viruses.
Before long we learned that some people got sick and some didn't because they had strong natural defenses and/or they had become immune to diseases through repeated low level infection. This insight led to the development of the vaccine responsible for nearly ridding the world of polio (the World Health Organization predicts that the world will be rid of polio by the year 2002).
Could we have "de-immunized" ourselves? Doctor Jim agrees that without regular contact with the virus or the vaccine people would be more vulnerable to serious infection.
I got polio because I somehow ingested an enterovirus (see definition below) that, for some reason, my immune system was unable to fight. But the question still remains unanswered: Why is it that I go to PPS meetings and see only intelligent, good-looking people?
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ENTEROVIRUS
The American Heritage Dictionary defines enterovirus as "Any of a subgroup of picornaviruses, including polioviruses, coxsackieviruses, and echoviruses, that infect the gastrointestinal tract and often spread to other areas of the body, especially the nervous system."
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"The only thing I exercise is caution."
Doris Starrett
[end "From Ten Years Ago]
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Breathing & Sleep 2010
Defining neuromuscular breathing basics and empowering people with PPS, ALS and muscular dystrophy to better participate in their own care
Date: Sunday, November 21, 2010
Time: 9:00am – 2:30pm
Where: The Salk Institute for Biological Studies
10010 North Torrey Pines Road
La Jolla, California 92037
The seminar’s objectives will be to explore and discuss:
• How Post Polio Syndrome and motor neuron disease affects breathing
• How poliomyelitis affects the motor neurons in the brain stem and how that influences respiratory drive
• How to simplify the vocabulary of a Pulmonary Function Test (PFT)
• What you need to know about anesthesia and how to correctly communicate with the anesthesiologist
• What post surgery respiratory support solutions should you consider
• How to understand each setting on your Non-invasive Positive Pressure Ventilation (NPPV) equipment
• What is the appropriate interface for each machine…and for your use
Presenters:
Joshua Benditt, MD, FCCP – Northwest Assisted Breathing Center
University of Washington Medical Center/Seattle, Washington
Louis J. Boitano, MS, RRT, RPFT
Northwest Assisted Breathing Center
University of Washington Medical Center
Seattle, Washington
Selma Calmes, MD – Chief Physician of Anesthesiology (Retired)
Professor of Anesthesia at UCLA School of Medicine in Los Angeles (Retired)
Helen Kent, BS, RRT –
Founder, Progressive Medical Respiratory Care
Co. Carlsbad, California
Angela King, BS, RPFT, RRT-NPS
ResMed Corporation/Sr. Director Clinical Ventilation - Americas
[It’s free!]
To register online, go to http://www.salk.edu/breathingandsleep
or call or email Gladys Swensrud at (858) 271-9288 email
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UCLA Neurologist and PPS expert
Dr. Susan Perlman answers your questions.
From http://poliotoday.org
[UCLA Neurologist Dr. Susan Perlman answers your PPS-related questions. She has been diagnosing and helping to treat PPS patients for more than 25 years.]
Dear Dr. Perlman,
I understand that many survivors don’t generally experience pain, while others often speak of cold “polio feet” or pain associated with joints and age-related concerns. It has become apparent after numerous tests and the opinions of my physiatrist and my neurologist that the significant pain I experience with pressure to the skin, cold, and hot temperatures are attributable to PPS.
I’ve been told that such sensitivity is likely due to the unique damage done when I experienced the virus as a child. Although I haven’t heard many speak of this extreme sensitivity, I read the other day for the first time that one of the symptoms associated with the viral attack is in fact sensitivity to touch.
Could you help me understand this phenomena and the prevalence of survivors experiencing these types of symptoms?
– Bonnie
(Oregon)
Dear Bonnie,
This hypersensitivity phenomenon (which is seen in about 40% of polio survivors whom I have seen) is most likely caused by changes in spinal cord centers. The original polio caused inflammation in the spinal cord and damage to the anterior horn cells/motor neurons. The inflammation appears to have inflamed neighboring areas of the spinal cord as well, which include pathways that control hypersensitivity (sympathetic pathways) and pathways involved with muscle spasm (upper motor neuron pathways). The only pathways that are typically not affected acutely or in post polio are the pathways that control numbness.
Dear Dr. Perlman,
It has been recommended for polios to take L-carnitine for energy replacement. I take two capsules upon getting up in the morning and another two during the day. The first two bottles seemed to work okay, but now it seems to be working in the opposite direction. After I take them, about half-an-hour later, I need to go to bed and have a sleep.
Can you shed some light on what possibly may be going on?
Regards,
– Anna
(Australia)
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Dear Anna,
There are a few questions raised by your experience: Are you taking the same brand of carnitine? Sometimes different brands have different additives that you may react to. Has anything else changed in your vitamin or medication regimen that could be causing increased fatigue? Has your sleep changed, become less restful, causing increased fatigue? Are you doing more since you started the carnitine, leading to overdoing and hence increased fatigue?
Getting rebound from carnitine and a paradoxical effect as you have described would be unusual, but you might try taking a one-month holiday from it, then restarting.
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Happy Thanksgiving
Merry Christmas
Happy Hanukkah
Feliz Navidad
Happy New Year
May your holidays
be warm
and friendly.
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MEETING REPORTS
September 11, 2010, Meeting Report
By Gladys Swensrud
It is such a joy to look around our room on meeting day and see all the familiar, friendly faces. As our numbers grow, so too do the smiles. This month we posted several of our meeting photos on PolioToday.org. (Take a look if you get a chance!) We took this opportunity to notice exactly how many of our members are also linked online. It was abundantly clear that although many of us are old time members, many, many new people have joined our group in the past year.
We mainly attribute that to the networking and meeting reminders that we are able to post on PolioToday.org. Increased communication has strengthened our friendships and our commitment to share information, as well as good times together.
This month we welcomed one new visitor and one returning visitor. And a big highlight was having one of our online friends, Lisa Zion who lives in Murrieta, drive down to join us as well! What a treat! We hope to see others joining with each additional meeting. Everyone is welcome! You can link to PT.org and always find the next event posted, so you always know what we are up to and who is on our speaker schedule!
This month’s meeting allowed much time for sharing. In honor of 9-11, as we introduced ourselves we told a little about the types of volunteer activities that have ruled our free time. What we quickly learned is that everyone has given of themselves to help others. Polio survivors seldom focus on themselves; they have learned to accept the hand they were dealt and seek ways of making life better for themselves and those around them. What an impressive group of people with whom to be affiliated!
The other highlight of this month’s gathering was to run a segment of the late Dr. E. Anthony Oppenheimer’s presentation at the San Francisco Bay Area Polio Survivors, 2003 conference – Aging with a Disability, The Late Effects of Polio. Gladys set the stage by sharing a personal account of Dr. Oppenheimer’s commitment to the respiratory compromise issues polio survivors too often experience. Dr. Oppenheimer was an advocate like no other; he communicated with anyone in need of help. Our group was captivated by how enlightened he was eons before his peers understood our plight.
The next San Diego Polio Survivor Meeting is planned for November 13, 2010. Our guest speaker this month will be Kelly Kenesie-Tena, who founded and owns the company CpapRx. CpapRx was developed with the person who might sleep with some type of nighttime support, yet who loves to travel, in mind.
Kelly is a nurse specialist and a sleep apnea patient herself, so she understands firsthand the issues of nighttime ventilation and the limitations that tend to unduly place on travel. CpapRx specializes in traveling with both cpap and bi-level therapy.
Kelly will discuss: Travel manuals, Medical Grade Battery Packs to improve portability and versatility of travel, Power cords/Adapters/Inverters, Luggage/Alarm Clocks/Travel Pillows…and MUCH MORE!
Sign on to PolioToday.org and you can confirm that you plan to attend. That gives us a heads-up for seating, but you are welcome to join us on the spur of the moment as well!
Holiday Party at Rick Kneeshaw’s House
The Kneeshaw's would like to host this years Holiday Party at their new totally accessible home in Scripps Ranch. Everyone in the San Diego, Hemet, and North County groups are invited. We can accommodate everyone together. The date is December 11th. at 11AM. We will provide the main dish and all drinks, plates, etc.
Valet Parking will be available and there are no steps. The home includes an elevator for those that want to use the upper deck. There also is an accessible sports court (basketball, badminton, etc.), accessible gardens, accessible outdoor patio, and putting green. The front yard includes an accessible fish pond.
Rick will have all his trains up around the Christmas tree so you can even take your turn running a railroad!
Everyone should bring a side dish or desert to share. Please RSVP to Rick at piecon@mindspring.com
Hope to see you at:
11541 Sweet Willow Way
San Diego, 92131
___The next San Diego meetings:___
November 13
December 11
Holiday Party
_______________________________
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 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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SAN DIEGO NORTH PPS SUPPORT GROUP
Name Change: We have changed the name of our group from Escondido PPS Support Group to San Diego North PPS Support group to reflect our membership more accurately.
We welcomed Dr. Alexandra Bunyak of Boundless in Encinitas, CA at our October 12 meeting. Dr. Bunyak is a physiatrist who specializes in pain management. She was trained in Chicago Il and practiced in St Louis MO before relocating to Encinitas. Dr. Bunyak has studied and treats patients with post polio syndrome.
Dr. Bunyak’s presentation included an overview of the causes of post polio as it relates to pain and its pain management. Some of the topics covered included exercise and its limitations, controlling stress, medications for different types of pain and alterative therapies.
Exercise is very important for overall health but should be suited to the abilities of the individual. Stretching is very important as a warm up. There are many options for strength training and aerobic exercise. Injury prevention is most important so each person should consult with a professional to create an individualized program.
It is also very important to control stress in order to control fatigue and weakness. Some ways to control stress are diaphragmatic breathing, visualization, yoga, regular exercise, biofeedback and hypnotherapy. Lifestyle adjustments can be part of reducing stress and stabilizing weakened joints by using aids can also reduce overuse of the motor neurons.
When pain happens, it is important to get a correct diagnosis as all pain is not post-polio pain. Other conditions should be ruled out. The polio virus affects the brain centers responsible for production of serotonin, norepinephrine, dopamine and endorphins. Pain medications must be the correct solution for the specific pain.
Alternative therapies can also be effective in the treatment of PPS. Some of the alternative options include: nutritional therapies, hormone therapies, body work including massage therapies, energy work including acupuncture/acupressure, magnet therapy, hypnotherapy, homeopathy and aromatherapy.
Choose options with low risk of harm, practiced by qualified professionals and healers, and share the options you choose with your healthcare team.
We would like to thank Dr. Bunyak for her informative and knowledgeable presentation. As we all know, it can be difficult to find professionals who have such an extensive knowledge of post polio. She can be reached at:
Boundless
Dr. Alexandra R. Bunyak
317 N El Camino Real
Encinitas Ca 92024
www.boundlessmed.com
760-632-1090
In other business, our friends at The Foot Comfort Store owned by Alison Blaha , has relocated to just off of the 78 in Vista. Exit at Emerald Dr:
1830 Hacienda Dr. Suite 5
Vista CA 92081
Wwwfootcomfortstore.com
760-598-3668
We look forward to another presentation in June 2011
On a side note, I have had an orthotic made by Foot Comfort and am very happy with the results. It has greatly reduced my foot rolling and is very comfortable to wear. It was also very fairly priced. I think that it is important to share venders who work well with our disabilities.
We are trying to build a book of professionals such as physicians, clinics, alternative therapies, breathing therapies, aids such as bracing, orthotics, walking aids, chairs and scooters, etc., books and DVDs and websites. If you have anything to add to this list, please send to mloba@cox.net. You may include information from all areas as I sometimes get contacts with PPS people from all over Southern California and John and I would like to build a resource book, which can cover a large area. When we get enough entries, we would like to share with other groups. Please include name, specialty and contact information for all entries. Thank you in advance for sharing – we all need to find professionals who can provide competent care for post polio patients.
Also, please don’t forget the Breething & Sleep Symposium at Salk Institute on November 21, 2010 from 9am to 2:30pm.You can sign up online at wwwPolioToday.org. Our special friends, Gladys Swensrud, Rick Van Der Linden and Angela King from Resmed, have worked very hard to present this awesome presentation. Hope to see you all there!
Looking forward, our next meeting is on Tuesday December 14, which will include a short video presentation and a holiday celebration. On February 8, we will welcome our friend, Dr. Bradley Schnierow, who will talk about breathing and sleep. We are hoping to get a pain specialist for our April 12 meeting and on June 14, we have a presentation by Alison Blaha from the Foot Comfort store. Please join us for future presentations.
Each new day brings about another chance to make a difference in our world.
Marilyn
______The next meeting:______
December 14
____________________________
Regular meetings on the second Tuesday of even # months from 1:00 to 3:00 at
Joslyn Senior Center, Dorothy Boeger building, 728 N Broadway, Escondido
For more Escondido info. email Marilyn Loba ppsnorthsd@cox.net
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Hi Everybody.
The September meeting was canceled at the last minute. My apologies to the folks we didn’t reach in time who arrived at the meeting place wondering what was happening.
October’s meeting went a little better. We had a good turnout, and plenty of PPS discussion including doctors, breathing management, overall management, and the upcoming Christmas party.
The Christmas party is set for December 19, noon, at Valley Wide Recreation on Esplanade in San Jacinto. Pot-luck, so Call Bunny (951) 766-7118
Rick
_____Our next HAPS meetings are:_____
November 15
December 19
Christmas Party
____________________________________
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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PPS Meeting Riverside October 16, 2010
One thing that keeps PPSers going is the drive to be of service and to spread joy where we can. Lorraine Hartik is a good example of this. Among her many activities, she volunteers in hospice care for the Visiting Nurses Association and the Redlands Community Hospital Hospice. She attended a recent function for VNA volunteers, where they reminded everyone that volunteers need to take care of themselves so they can be there for others. After lunch they demonstrated the therapeutic value of music with some fun and creative activities. One guest, who had been quite depressed before lunch, did a complete turn-around during the music – he just glowed with joy.
Lorraine’s personal PPS story was recently added to the PolioToday.org website http://poliotoday.org/?p=736. We searched Google for a photo of Sister Kenny, but could only find one photo. Let us know if you have additional pix!
We talked about pain management, prescription drugs versus natural remedies, and the use of magnesium with vitamins to handle leg cramps. This led to a discussion of high energy drinks to combat fatigue. We went to the website for “5-Hour Energy Drink.” The list of power-packing nutrients is long – how can they pack all that in there? Several websites discuss the product, and caution against Vitamin B overdosing, especially for people who are already high caffeine users. Read the review at: http://www.pain4glory.com/5-hour-energy-drink/
Pain and fatigue are some of our biggest issues. An occasional energy booster may have its value, but remember that with energy comes that fun thing called “getting things done” – you get the picture, right? Use moderation. Don’t push past your limits. That’s one way we got where we are today, which fulfilled us in some areas, but also helped to aggravate our bodies into the PPS we have today.
Edward told us of his PPS-savvy doctor at Riverside Medical Clinic. Dr. Michael Saito, Pediatric and Adult Neurology, was an associate of Dr. Susan Perlman (UCLA), and is not just PPS-sympathetic, but PPS-knowledgeable as well. Ten years ago he told Edward to retire in order to avoid aggravating his post-polio condition. Edward was able to get SSD based on post-polio without a hassle.
Next meeting - We decided that our normal December date falls too close to Christmas this year, so we are moving it up a week.
Riverside Holiday Party Saturday December 11 (not 18) – Holiday feast and atmosphere. RSVP doesn’t have to be definite, and potluck is optional. We’d love to hear from you. Time 11am to 1pm, 3465 Ramona Dr, Riverside 92506.
(951) 788-9310. PPSRiverside@aol.com
Reported by Judy Mahoney
____The next Riverside PPSG meeting:____
December 11
Holiday Party
______________________________________
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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SPECIAL NOTICE: the new meeting day is now Tuesday.
__________Next meetings:___________
September 14
October 12
___________________________________
Regular meetings: Second Wednesday of every month. Location varies.
For information contact Vi at (760) 949-6775
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While Polio Survivors Plus continues to celebrate its tenth anniversary, its Board of Directors wishes each reader of the "PPS Manager" a Happy Thanksgiving and sends Season's Greetings for the upcoming holidays. Enjoy 2010's happy, healthy holidays.
Happy, Healthy Holidays
At a October's meeting, attendees were reminded "to conserve to preserve" one's physical ability and emotional health during the end of 2010's year-end holidays. Minimize stress and get ample rest. Learn to recognize common holiday triggers, so you can disarm them and plan ahead with 10 points in mind:
Acknowledge your feelings. Tensions are often heightened during the holidays. Relationships can cause turmoil and stress at any time. Relationships can be tested. If you can't be with loved ones, realize that it's normal to feel sadness and grief. You can't force yourself to be happy just because it's the holiday season. On the other hand, tensions are often heightened during the holidays and familial relationships can cause turmoil, especially if you're thrust together for several days. Take steps to relieve stress, loneliness and sadness. It's a time to be grateful, to be appreciative and to share.
Reach out. If you feel lonely or isolated, seek out community, religious or social events. They can offer support and companionship. Volunteering your time to help others also is a good way to lift your spirits and broaden your friendships.
Be realistic. The holidays don't have to be perfect or just like last year. As you deal with the challenges of post-polio, plan and pace yourself to conserve and further ensure a preservation of your physical abilities. Families change and grow; traditions and rituals often change, too. Choose a few traditions to hold on to, and be open to creating new ones. For example, if your adult children can't come to your house, find new ways to celebrate, such as sharing pictures, emails or videotapes.
Set aside differences. Try to accept family members and friends as they are, even if they don't live up to all of your expectations. Set aside grievances until a more appropriate time for discussion. Be understanding if others get upset or distressed when something goes awry. Chances are they're feeling the effects of holiday stress and depression too.
Stick to a budget. With the added expenses of gifts, travel, food and entertainment, the holidays can put a strain on your budget — and your peace of mind. Keep it simple and remember it's the thought that counts. Before you go gift and food shopping, decide how much money you can afford to spend. Then stick to your budget. Don't try to buy happiness with an avalanche of gifts. Try alternatives like donating to a charity in someone's name; giving homemade gifts; or starting a family gift exchange.
Plan ahead. Set aside specific days for shopping, baking, visiting friends and other activities. Plan your menus and make lists. That'll help prevent last-minute scrambling to buy forgotten ingredients or gift items. Be sure to line up help for party prep and cleanup. Always include two naps in your daily plans that are at least 25-30 minutes each in length.
Learn to say no. Saying yes when you should say no can leave you feeling resentful and overwhelmed. Friends and colleagues will understand if you can't participate in every project or activity.
Don't abandon healthy habits. Don't let the holidays become a free-for-all. Overindulgence only adds to your stress and guilt. Have a healthy snack before holiday parties so that you don't go overboard on sweets, cheese or drinks. Continue to get plenty of sleep to adequately balance your physical activity.
Take a breather. Make some time for yourself. Spending just 15-30 minutes alone, without distractions, may refresh you enough to handle everything you need to do. Listen to soothing music. Find something that reduces stress by clearing your mind, slowing your breathing and restoring that inner calm.
Seek professional help if you need it. Despite your best efforts, you may find yourself feeling persistently sad or anxious -- plagued by physical complaints; unable to get restful sleep; having irritable and hopeless moments; and unable to face routine chores. If these feelings last for a while, talk to your doctor or a mental health professional.
Exercising When Physically Challenged
Professor and Department Chair of Adapted Kinesiology at Saddleback and Irvine Valley Colleges Michael Bennett, MPT, was the featured speaker at PSP's October 27th meeting in Clubhouse 3 of Laguna Woods Village.
"There are risks and benefits," he said. "The most important fact is that one needs stretch first to keep limber."
With a Power Point presentation that he made available to meeting attendees, Mike reviewed effective methods for exercising, despite a person's physical challenge. For PPSers, he stressed that when most people take 15-minute cat naps, polio survivors should take two naps, which are at least 25 minutes minimally per day. His presentation elicited so many questions from attendees that the meeting went into overtime mode. Polio survivors offered exercise and supportive devices to prevent muscle fatigue and to deal with muscle spasms, as well as muscle contractions.
Through his program at Irvine Valley College, students are often people who have been released from hospital rehab programs, outpatient physical therapy centers or home healthcare plans. Adapted Physical Education Program enrollees may see improvements in the key fitness categories of muscular strength and endurance; flexibility; cardiovascular condition; and body composition. The program is designed to provide people with disabilities (PWDs) the opportunity to benefit from improved physical fitness and recreation. Enrolled PWD students, can utilize partial body weight support on a treadmill; a rickshaw for triceps strengthening; upper extremity Ergometer and VitaGlide, recumbent SciFit Stepper and Ergometer; as well as the EasyStand Glider that allows one with limited to no muscle strength in the lower extremities to move in a cross-country skiing motion independently.
In his Adapted Kinesiology (KNEA) Department at Saddleback College, Mike's efforts are to help enrollees benefit from improved physical fitness, modified sports and recreation. KNEA provides a fitness and sports experience for those who can't participate in a regular kinesiology educational setting. Students can enjoy adapted water exercise and swimming; adapted mild water exercise; adapted personalized fitness; survey and assessment of fitness and adapted sports (like tennis, basketball, softball, golf and bowling).
Prior to joining the staff at Saddleback College, Bennett worked as a physical therapist in a variety of settings, including pulmonary rehab, acute rehab, outpatient therapy and home health. His specific area of research and interests include aerobic conditioning for people with disabilities.
Partnership Benefits All
By partnering with the PPSGs of Riverside and North San Diego (and particularly with the efforts of John Hagee, Judy Mahoney, Sue Lau, Barbara Minder and Gene Minder), Polio Survivors Plus can now bring its meeting presentations into the homes of those who aren't able to attend PSP's support group meetings.
When a person wants to benefit from the knowledge of a scheduled speaker, but for health reasons, just can't be present, it's now possible to borrow a CD or DVD from PSP's or the PPSG-Riverside's library. Smaller PPSGs are also invited to utilize these recordings so that their polio survivors and care givers can benefit from the expertise of speakers who are arranged by PSP's Program Chair Gladys Bushin. For further information about this new service, contact Polio Survivors Plus.
Reported by Sue Lau
___________Next meetings:____________
November ?
December ?
___________________________________
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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People often ask how they can help with this newsletter. Besides the words of encouragement, which I value so highly, there are two ways to help.
One is financial support. I hesitate to mention it, because it’s never been a problem. You’ve always been there for your newsletter.
The other way you can help is to write me. Let me know your questions concerns, ideas, and suggestions. Go to your local meeting, and then send me a report. It gets lonesome here on the ranch. Rick VDL
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Q&A
Follow-up on last issue’s question regarding GERD.
Dear Rick,
I wanted to send you a message regarding Nancy Baldwin Carter’s letter to you questioning any relation of PPS and GERD. I might be able to help Nancy with what I have gone through this year as a result of having GERD for the past 25 years.
I have had to deal with Gastro Esophageal Reflux Disease on a daily basis since 1985, never missing a day of medication due to the severity of the disease. The medication kept things under control for the most part, except for the last 2 years, which have been horrible for me. 2010 the worst year health wise for me due to waiting for multiple tests and then determining which surgical procedure would work for me.
On August 16th, I had a procedure called a Nissen Funoplaction, otherwise known as a full stomach wrap to correct the excessive acid my body is producing.
During the duration of time I have had this disease, I have also have had problems with, thyroid nodules, gluten sensitivity, now on a mission to be on an all gluten free diet.
This GERD problem was so bad in November of 2009 I requested a review from the Pulmonary department with my medical provider, Sharp Rees-Stealy as I was having problems breathing and fatiguing easily.
Long story short, I did a Sharp sleep study overnight at home, I was diagnosed by Sharp as having mild sleep apnea. They were ready to issue me a CPAP machine and I refused it. I went back to the Sharp doctor and requested a PFT and tried to discuss my knowledge of Polio and breathing problems with the doctor. I told him I was sure I needed a b-level S/T; his only comment was, “that’s for people with respiratory problems” as he was leaving out the door.
I was tested by Sharp but they did the PFT sitting up and only said they had never heard of lying down for this test, and this was a Sharp Rees-Stealy R.N. in the pulmonary department!!
I went out of network after that fight because I was at the point where I could hardly breathe, I didn’t feel comfortable driving, I felt total brain fatigue. I got tested correctly by Progressive Medical in January 2010 with my new Res-Med bi-level S/T. I could go on and on about the advantages but will save that for another time.
Had I not chosen to go out of network to acquire my new bi-level S/T, I could be dead by now. Not to be dramatic, I can’t imagine my problems with GERD this year and not having the nightly help for breathing. As badly as I felt during the day prior to my surgery, whenever I would sleep/nap with my bi-level S/T, I was in complete comfort, my body felt better and will always feel better due to this priceless machine.
Perhaps it would be interesting and informative to also mention I am currently going after Sharp Rees-Stealy to cover the costs of my ventilator. I have made 2 good attempts, both they have refused to cover my costs saying they did nothing wrong. Now that I am getting better, I will continue the mission. It’s more about educating them about Polio and breathing issues than recovering my out of pocket costs but that would be nice too.
Hope I might have helped Nancy, if she has further GERD questions, perhaps I can help.
Your friend,
Paula Lambert - thegoobster4@gmail.com
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Thank you Rick!
Wonderful information.
Take care!
Sara
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Hi Rick,
Your article, Don't Get Your Panties in a Bunch triggered a thought. I don't know if this has anything to do with PPS or polio or not, but I have dealt with a particular problem my entire adult life. I am told that I am a good listener, and I generally can respond well to almost anything. However, there are things that ring my bell instantly, and I have reacted (usually with strong swear words) before I am aware the attack took place. All my adult life I have been aware of my effort to learn to respond rather than reacting, and all the efforts in my life seem to have made no difference. I wonder if this is related to polio?.?.?.?
Larry Kueneman
Hi Larry,
You bring up a very good point.
It’s strange I didn’t mention it in the article, but anxiety, impatience, taut nerves, and overreaction (all the same kind of thing, actually) are among the symptoms of hypoventilation, which is found in about 60% of PPS folks. I believe, it stems from cognitive limitations brought on by CO2 buildup in the brain. We get a one-track mind and freak out when someone sidetracks it. The cure is overnight non-invasive ventilation (NIV) via bilevel ST.
Before NIV, I used to go into a full body spasm whenever someone took me by surprise. And, the smallest interruption caused an instant fit. I’m still that way a little bit when I’m tired and overworked, but nothing like before.
I’m guessing there could be other factors involved for a minority of polio victims. The polio virus could have damaged higher functions in the brain. Autopsies of polio victims by (I believe it was) David Bodian showed lesions around the brain stem where basic movements and functions (including breathing) are initiated, but more rarely in the areas of higher function.
Because of the cognitive impairment, it’s difficult for a person with CO2 buildup to recognize and admit the problem. That’s just the way we are. The lucky ones (myself included) catch on before it’s too late.
Rick
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Hi Rick!
Are your legs as miserable as mine have been the last month with all these clouds?? :( Put on our happy faces!! :)
I go back often and read your latest letter on the weather, this is a wealth of information to me, things I kind of already knew of how the weather affects us PPS folks. You just added all the rest of the detailed stuff I didn't know and found fascinating.
I was at my primary doctor yesterday for a check up since my August 16th surgery. One of the items on my list to discuss with him was this whooping cough shot that is out there and available.
I have asked the question at our San Diego meeting a few months back, who had whooping cough in their lifetime. I was kind of surprised to see several hands go up! I was in 6th grade and I was out all of summer vacation sick as a dog coughing and couldn't sleep. It was totally a miserable experience. I am left with a permanent deep cough from this.
I received the whooping cough injection yesterday along with my annual flu/H1N1 shot. My doctor was definitely in favor of me having the injection especially since I had whooping cough earlier in life.
I wanted to pass this on to our other members as I feel this is really a crucial illness to avoid if possible. I had it, it's awful, end of story! Avoid this by getting the shot!
Take care Rick!
Paula Lambert
Paula,
Thanks for the good advice.
Rick.
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Dear Rick,
Since I started using the wheelchair in my condo, I find it keeps getting harder to get out of it. Like over-exercising the weakness in my leg. The doctors don’t help much.
Hope you are staying warm.
Nona.
Nona,
When it comes to our muscles, there’s a fine line between too much activity and too much rest.
I find that under-activity feels nearly identical to over-activity. The trick is to be just active enough to maintain muscle tone without wearing them out.
I find that it works to have two or three active days per week. These are days when I risk over-doing it. Then you have days to rest before and after.
For you this may mean not using your wheelchair for a few hours a day on certain days of the week. It may be just enough to keep up the strength you need without losing muscle in the long term.
As usual, PPS management requires careful planning.
Rick
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Note:
Julianna sent me a copy of Kate Nolan’s article “Polio’s second act” published in the September 2010 issue of The Rotarian. It’s a well-rounded explanation of PPS and ties in with their PolioPlus program.
Thanks Julianna for reminding us that Rotary International has been working long and hard to rid the world of polio.
Let’s look forward to the day Rotary wins the battle against polio and can direct all their resources into PPS programs.
Thanks Julianna and thanks Rotary International.
Rick
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Hi Rick,
Your September newsletter is just fantastic as always: chock full of excellent information and your wonderful sense of humor.
I do have a question: I fell about a month ago when my scooter tipped. When I fell, the scooter fell on top of my stronger leg. My neurologist told me that I tore some muscles in my calf and ankle.
Do you know what can be done to help it heal? It is painful and swollen. I cannot wear my compression stockings. I do not walk at all anymore.
I am trying to rest my leg as much as I can. I am also taking Arnica pills. Do you know about the benefits of Arnica-both the gel and the pill?
Any suggestions would be appreciated.
Best wishes from one PPS manager to another…
Lois.
Lois,
I tore a calf muscle the last time I rode a bicycle. That was over a year ago. All I could do was avoid straining it and wait for it to heal. It took a few weeks as I recall.
I looked at Arnica on the Internet, and it didn’t appear to be all that safe. I tend to let nature take its course anyhow.
If you decided to try it, please let us know what happened.
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. Special thanks to: Richard Conrad, Bonnie McDonald, Carl & Virginia Nichols, Patrick J. Keane, Bonnie Doshier, Sally Lamberteaux, Lou Ann Novits, Riverside PPS Group, Richard & Mildred Atchison, Shirley & Julie Hueftle, Patricia Mansell, Henry M. Levitz, Robert & Lois Jackman, Julianna Faulkner, Robert Therrien, Patrick J. Keane (again), Nona Atkins, A, Segal, and Carolyn Vish. 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.