July 2008
In this Issue:
Special Notice
Lisa Zion
Letters and much more…
Meeting reports:
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FROM THE EDITOR
Hi Fellow PPS Manager,
For this issue I reluctantly wrote “Special Notice” in an attempt to insure that this newsletter would be able to continue. I say “reluctantly” because I’m not sure I should make such an effort to keep it going. It’s been a solo effort (of course we can’t forget Gladys Swensrud’s great contributions) for nearly ten years, and that’s a long time to set aside the considerable hours needed to do this thing.
At some point in the near future, I’ll have to let it go. Eventually I’ll be writing something asking you to quit contributing so I can quit - but not yet.
Why not quit? Because just as I was ready to pull the plug I got a series of emails and phone calls reminding me of how important it is to get the information to the many PPS Managers who are stuck at home and need to feel connected. And then there are those of you who need to be able to (through their letters and contributions) have the opportunity to reach out a hand to others.
So, with your help, onward we go.
Oh, and be sure to check out this month’s meeting reports and letters. Good stuff.
Have fun .... Rick
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Special Notice
I’m asking you to do something.
First I want to thank all the people who have contributed over the years. There are several staunch supporters whose names repeatedly appear on the last page of the newsletter who may go unnoticed to many readers, but not to me. I sign my name on the back of those checks and print a big "THANKS!" on behalf of all of us.
However, in spite of the efforts of so many financial supporters, the PPS Manager Newsletter is running low on money. As of this issue, remaining funds are sufficient for one more year of the Internet site, and two more printed issues.
Over the years, income has just met the needs with a usual six month to one-year reserve of funds. However, a few months ago the cost of printing nearly doubled, though income has remained level. The cost of printing a normal 16-page issue for the 620 people now on the mailing list is about $450.00 (This includes postage for a dozen doctors and other professionals who receive the newsletter) while the web site costs around $100.00 per year. Other costs include blank labels, occasional computer expenses, compensation for gas, etc.
These are the actual expenses. I donate my time writing, compiling, and shuttling the newsletters from the printer to my home for labeling, then to the post office. Then there’s formatting for the Internet, etc.
In the meantime I need to try cutting down the list if possible. So:
Here’s what YOU need to do
- If you do NOT have access to the Internet, and WOULD LIKE TO REMAIN ON THE MAILING LIST, please WRITE and tell me so.
R.E. Van Der Linden
34711 Lyn Ave
Hemet, CA 92545.
or: - If it’s difficult for you to write, just call your group contact person (phone number at the end of your group’s meeting report) and they will email me on your behalf to ensure that you remain on the mailing list.
or:
- If you have Internet access, please send an email to ppsman@aol.com advising me whether you wish to remain on the snail mail list or if reading the newsletter on (or downloading it from) the Internet - www.ppsmanager.com - is good enough.
Also: - If you would like to sponsor a complete issue (either by yourself, or with a group of friends) let me know and I will dedicate the issue to your group and acknowledge your sponsorship. Don’t forget to ask your medical service providers if they’d like to sponsor an issue.
Remember, you don’t have to contribute to receive the newsletter, you just need to let me know you’re still out there. I’m writing this to make sure we’re not wasting money by sending the newsletter to wrong addresses.
Your fellow PPS Manager,
Rick Van Der Linden
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Polio People in the News
Lisa Zion
Lisa Zion, former leader of the Temecula (CA) PPS Support Group, is becoming well known for her acting ability. She has been seen in film and on TV, and is currently playing a part in the stage presentation of “Real Girls Have Curves” at the Old Town Temecula Community Theater.
At the time of this writing, Lisa had just returned from performing in a variety show in Venice, CA as one of ten women selected to perform in a program called “Expressing Motherhood.”
Her credits include work on HBO’s “Six Feet Under” and other TV shows as well as independent film and stage presentations.
Lisa still maintains her day job as a loan officer. She and her husband, John, have three children.
You go, Girl!--∞∞o∞∞--
MEETING REPORTS
San Diego Polio Survivor Meeting Notes
May 10, 2008
Note Taker: Gladys Swensrud
For the twenty who attended, Rick Kneeshaw began our May meeting at 10:12am with member introductions and sharing what plans each of us might have for the upcoming summer. Rick began by first updating us on how Lenora was doing with her chemotherapy. He explained that she is holding her own at potentially the halfway mark in her chemo protocol. He shared that he is encouraged by her progress to date. We hope he extends our love and best to her!
Our guest Speaker this month was Stasia Place, Emergency Services Coordinator from the County of San Diego Office of Emergency Services. We found Stasia (pronounced Sta-sha) to be extremely knowledgeable about the many disasters for which our area could be susceptible. She works for the local Red Cross, so is well versed in every aspect of emergency preparedness.
As she began, Stasia surprised us by stating that there are approximately 300 fires a year in San Diego. Most are quickly extinguished. However when dry brush and grasses are combined with trees weakened from the Bark Beetle infestation, and then high winds whipping through the county are thrown into the mix, we find ourselves in a position of extreme fire danger like we were in 2003, and again in 2007.
Stasia wanted us to recognize not only the risk of fire within our community but the other potential problems for which we must be prepared in advance. Naturally, because of recent history, we consider fire our most serious threat, but it is certainly not the only one. The risks we are most vulnerable to within the San Diego area include: fires, earthquakes, mudslides (post fires)…and we all agreed we run an additional risk as targets for terrorist activity because of all the military installations in San Diego. Stasia reminded us that once you are prepared for one of the above emergencies, you will essentially be prepared for all.
As a first line of defense, she suggested that each family create a disaster plan. That would include deciding what you would do and where you would go to remain safe, either during or after an emergency.
For Earthquakes she suggested you do the following:
- Begin with simple things like anchoring your bookshelves to the wall. If you choose not to anchor them, then be sure to place heavier books and items on the bottom shelves.
- If you have your bed under a window or between two windows, keep a set of shoes and a flashlight under the bed. During the Northridge earthquake one of the most common injuries was lacerated feet from stepping out of bed in the dark onto broken glass from windows.
- Anchor your water heater so it is securely in place.
- Know two ways to get out of each room of your house - doors and windows.
- Do all members of your family know where to go and what to do in case of an emergency? Do you have a general meeting location, like the neighborhood Vons or Starbucks in case you are away from home and can’t get home to gather together? Have a family member or friend in another state that you can use as a contact for others to connect with so they know you are fine.
- Keep a land-line attached and working in your home because cell phones may not work in a serious emergency. Land-lines will remain connected. Don’t throw out that old rotary or princess style phone. Whether you use it all the time or not, it is important to have handy to reconnect during a disaster.
- Stay away from windows, mirrors, chandeliers, and other glass items.
- If it is possible when an earthquake hits, get under a dining room table and above all else, protect your head and neck from injury.
- Another great place to wait out an earthquake is a bathroom shower or tub. If you are stuck there for a while, you have access to water and bathroom facilities. For the mobility challenged, in some cases staying where you are could be the safest place to wait out a quake. If you stand up, you run an increased risk of falling if you are unstable to begin with. Once again, protect your head and neck as well as you possibly can.
For fires, unfortunately, most of us have a recent frame of reference on how to proceed.
- Planting fire resistant vegetation like ice plant is an important step in creating a defendable perimeter around your home.
- Make a list of your household items, and store it with photos and important paperwork references on a CD. The CD will be proof of details you will need to share with insurance companies or financial institutions. Be sure that your CD is moved to a safe location away from your home, like a safety deposit box or at the home of a friend or relative…and that they know its importance.
- During a fast evacuation situation, you’ll quickly discover what is truly important for you to pack and take with you. The family heirloom may win a place in your car at the sacrifice of something you can easily replace. However to avoid bypassing something truly important, make a list of “Must remembers.”
Stasia noted that you should take a few moments and register your cell phone for Reverse 911; you can register up to 5 cell phones per address. Go to www.ReadySanDiego.org to do this as soon as possible. She also told us that if you are in the AT&T database, whether your number is listed or unlisted, you are automatically on the Reverse 911 call list.
The number one key to surviving any disaster is knowing what to do and what your limitations allow you to do. If you are handicapped, let a neighbor know your plan so afterward they can come check on you to be sure you are safe.
Stasia passed out to each of us a San Diego County Preparedness Wheel, which was designed especially for people with disabilities. It was modeled after the “Vial of Life,” which is a tube with personal data on a piece of paper placed inside the tube. You adhere the tube to the refrigerator so emergency personnel can find specifics to help you if you can’t speak for yourself in an emergency situation. Stasia reminded us to fill out the info on the front of the wheel and tack it on a bulletin board or tape it on the refrigerator. Filling it out is your chance to let written words speak for you should you not be able to speak for yourself.
We each felt the Preparedness Wheel had priceless information for almost any situation. As an example, for severe weather (Heat) it said the following:
Extreme Heat:
- Seek air conditioning and a Fan
- Take a cool bath
- Drink cool, non-alcoholic, non-caffeinated beverages
- If you begin to feel ill, call a doctor immediately or call 911.
To order a wheel for your family or group, call the San Diego County Operations Center at 858-565-3490 or contact Stasia Place at 858-715-2207.
Stacia reviewed with us many of the supplies every household should keep on hand in an emergency.
- Water is the number one item to have on hand. One Gallon of water per person/per day is the general rule of thumb. If you use your own bottles to fill from the tap, use old soda bottles that have been washed as opposed to old milk bottles. It is best to buy water in sealed bottles when possible. These are the safest water for you in times of disaster.
- Flighlight with extra batteries or hand cranked flashlight/radio
- Battery operated radio (and extra batteries)
- One week supply of non-perishable foods. Stay with your normal diet as much as possible, which means storing foods you would normally eat.
- Medications (list with dosage requirements and timetable for taking them).
- Don’t forget that pets have special needs too. Have copies of their shot records, water, food, medications, grooming items, extra leash and collar.
- An extra set of reading glasses. An older prescription you have recently replaced will work just fine in an emergency.
- Have a ready money (cash and coins) should you need it in the event ATMs aren’t working or are unavailable and you need cash for purchases.
- Trashcan liners
- Toilet paper
- Spare clothes (including extra socks)
- That CD loaded with pictures or personal information
- Etc.
Water Heaters – Although not the first choice for drinking, water heaters are safe sources of water for washing or sanitation. Most will give you 40 gallons of clean water. Be sure to check to be sure it isn’t too hot early in the disaster. Helpful Hint: Even if water isn’t running, you can still flush toilets as long as you have water to pour into them.
Familiarize yourself with 211 for Information and Referrals, which also has a website for general information at: www.211sandiego.org.
Have a back-up generator on hand for respiratory or other equipment you can’t be without. It can be used for recharging a battery on a power chair as well.
Stasia suggested storing a deck of cards and reading material in your emergency kit to occupy you for long periods of time you may need to spend waiting for help to arrive or for services to be restored. You won’t have access to power for TV, computers or other entertainment options.
The Preparedness Wheel has a multitude of helpful suggestions on it. Stasia ended her presentation by saying if we each go home and figure out how we can reduce risks, establish a plan and put together an emergency kit, then her visit today was very successful. She handed out her business cards for anyone with further questions.
The July 12th meeting of the San Diego Polio Survivors will feature Dr. Sara Fainstein.
Dr. Fainstein has advanced degrees in Clinical Psychology and Public Health. She has been the group facilitator for the Wellness Community-San Diego, and is continuing this line of work through the Caring Community-Living with Cancer and more recently, Sharp Chula Vista Medical Center's Breast Cancer Patient Navigator Program.
Dr. Sara is also a polio survivor herself and will be making a presentation to us on learning how to relax and deal with stress. She currently teaches relaxation techniques to cancer survivors in San Diego.
Dr. Fainstein is an independent consultant with various organizations, including San Diego County Cancer Navigator, where she provides patient services and outreach with a focus on the underserved and Latinas living with breast cancer. In addition, she facilitates two Spanish-speaking breast cancer support groups for San Ysidro Health Center’s PODER Program; a monthly Spanish-speaking group for parents of children living with cancer at Rady Children’s Hospital and Health Center-San Diego and co-facilitates a monthly Spanish-speaking group (Grupo Esperanza) for adults with all cancer diagnoses and at all stages of the disease, at the Moores UCSD Cancer Center with Mercedes Garcia-Mohr, Licensed Clinical and Oncology Social Worker.
Dr. Fainstein’s focus has always been working with underserved populations, in particular Spanish-speaking individuals living with cancer and their families. She facilitates educational programs and adds a stress reduction component to her support groups, in the form of relaxation and visualization.
If you have ever been stressed as a polio survivor you will certainly benefit from hearing this wonderful speaker.
[Editor's note: I searched the PPS manager Archives for a few words on stress reduction, and found 34 incidences. I guess it's an important issue.]
___The next San Diego meeting:___
July 12
Dr. Sara Fainstein
_______________________________
Regular meetings (until further notice) are at 10 AM on the second Saturday of odd numbered months at:
Kaiser Permanente 4647 Zion Avenue San Diego, CA, 92120.
For more information call Rick Kneeshaw email piecon@mindspring.com
Or go to http://polio.home.mindspring.com
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Our March 14th meeting was well attended and for a few a second meeting. The subject: " Why it is so hard to ask for help." Many of us have stories to tell about the initial onset of polio....weakness, pain, paralysis, breathing problems, and fears of isolation..... So, getting back on the road to recovery took many months of painful physical therapy, hot packs, iron lungs and even some experimental methods.
Once "recovered" if we experience any sign of weakness, fatigue or pain ....we questioned ourselves was it Polio? Who knew? So most of us kept that inside. Most of us still have the tendency to keep it to ourselves. If anyone asked me how am I doing? my usual response, "I'm doing fine." and I wondered if they saw something I didn't. I worried all the time and kept trying to keep up that vision of health. Once out of the hospital parents and family members made sure we kept up our exercises and we worked hard to keep up with them and then some. Unfortunately today, as PPS reared it ugly head, most of us still just say we are "OK" and we really do try to keep up. That may be a problem for us later on. Saying "I need help", or "I cannot do that", still isn't easy but I encourage everyone.....know your limits and it's OK to ask for help.
We welcomed Bob and Kathy Braddy back. They talked about traveling with disabilities. What to look for and what to ask before you pack your bags. They also shared a book, "There is Room at the Inn", by Candy Harrington of Emerging Horizons. Her book is filled with places to go with all the amenities provided for disability access. Her book included many photos of various disability accommodations at various resort destinations. Candy Harrington also has two other books, "101 Accessible Vacations" and "Barrier-Free Travel". Emerging Horizons is also the name of a quarterly magazine. For those of us who love to travel these books are invaluable before you take that trip. To order her books or magazine go to www.EmergingHorizons.com
Our June 13 meeting is our last meeting until October. We had Johnny Terrones speak to our group about The Ability Center. They do van conversions, platform vehicle lifts, custom curved rail stair-lifts in your home and other mobility aids for people with disabilities. They have stores in....Arizona, Southern (San Diego and Stanton) and Northern California and Nevada. Please check out their website www.abilitycenter.com Their phone number is 1 (800) 242-4111 or 1 (877) 938-8267
Our next meeting will be October 10. At that time Kathy and Bob Braddy will be our new facilitators for Coachella Valley. Joe Camaya and Barbara Hall have enjoyed the opportunity to serve this group and we welcome Kathy and Bob. We know they will be assets to the group.
_____The next meetings:_____
October 10
____________________________
2nd Fridays at 10 AM at Portola Community Center, 45-480 Portola Ave, Palm Desert CA Park in rear. For information, contact Bob & Kathy Braddy at 1(800) 242-4111 or (877) 938-8267 or email rbraddy@dc.rr.com
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Our speaker on Tuesday June 10th was our friend and supporter, Carlos Valenzuela, of Progressive Orthopedics. The topic was new developments in bracing.
The reason for bracing is for stance control. Older braces were made of steel and leather which were either attached to the shoe or were removable from a hole in the heel so it could be moved from one shoe to another. The next braces were made of aluminum and leather which were much lighter in weight. Newer braces are made from much lighter materials which are easier to lift and more comfortable to wear.
Balance is most important in successful bracing. Many polio survivors have some form of back knee. If the orthopedist tries to straighten the back knee with the brace, many times the balance will be affected and the bracing will be unsuccessful. Drop locks on full braces many times allow movement while providing standing support.
Stance control can be achieved by various methods. Some of the newer bracing developments include Sensor Walk which is a brace with a computerized knee control. It is quite heavy (7 lbs) and costs about $20000 (covered now by VA or workers comp). New releases for step control works with cables which are an improvement on drop locks. Becker makes a smaller sensor which is attached to the inside of the brace. There is also a new brace which has only bar on the inside of the leg. It is very lightweight but only works for patients less than 220 lbs.
The future of control is in neuro prosthetics or microorthotics which uses electrodes to stimulate the central nervous system. This is the “quiet revolution” in bracing.
FES or functional electric stimulation is the newest development in bracing. This system works best with damage to the central nervous system rather than the peripheral nervous system which is affected by polio. Tests must be done to determine if electrical stimulation would work. The FES machine is similar to a TENS machine and is used to diagnose to see if electronic stimulation is viable. It is most successful for central nervous system damage, not peripheral system damage although it can sometimes be helpful if there are enough neural connections. John and I were tested and even though neither of us had much success, he had more movement than I did.
Companies which are now offering electrical stimulation bracing are Walk Aide and Bioness. A small cuff is worn under the knee with electrodes attached to the skin on nerves in the lower leg. The stimulation of the nerves allows the muscles to work for standing and walking. Even though we were not successful candidates for this type of bracing, this research is in its infancy and we look forward to many new developments which will provide all of us the support we need in new lightweight and smaller bracing.
Carlos concluded with a last thought, “Orthopedics is empowering individuals with disabilities to achieve.”
We thank Carlos for his continued friendship and support for our group. He has been a great supporter for many years and is a regular attendee at our regular meetings. He can be reached at www.progressiveortho.com or email at progortho@sbcglobal.com.
Our next meeting will be on Tuesday, August 12th in Escondido at the Dorothy Boeger building in the Joslyn Senior Center complex. Our speaker will be Dr. Bradley Schnierow, medical director of San Diego Sleep Medicine in La Jolla CA. The subject will be sleep disorders. This presentation is also of great interest for fibromyalgia and similar diseases.
Reported by Marilyn Loba
______The next meeting:______
August 12
____________________________
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.
Come to the
HAPS SUMMER PICNIC
Sunday July 13, 1 to 3 PM
In the air-conditioned banquet room at:
Valley Wide Recreation
Esplanade Ave., San Jacinto
(Between Kirby and State streets)
Live music, fun, food, friends.
Bring your family and out-of-town guests.
Want to bring a dish? Call Bunny – 766-7118.
For our August meeting we’re expecting visitors from Lincare, a medical equipment supplier, and special guest Pedro. We’ll be able to ask questions about how we SHOULD receive our supplies, and maybe find out some things about the recent Medicare decision to require competitive bidding.
Also at the August meeting: breathing therapist Pedro will talk about the Better Breathers program.
Have fun … Rick
_____Our next HAPS meetings are:_____
July 15 - Indoor Picnic
August 19 - Lincare/Better Breathers
____________________________________
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@adelphia.net
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Our August meeting will be our annual BBQ (hope you can attend) - Saturday, August 16. Group will provide the meats & fixin's, others may bring side dish, chips, dessert, or just bring your smile! And your musical instrument!
____The next Riverside PPSG meeting:____
August 16 - BBQ at Bryan and Judy's
______________________________________
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
or Betty McFarland bbooplink@aol.com
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For information contact Marsha Hart at healthwithhart@charter.net
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__________Next meetings:___________
July 19
August 13
___________________________________
Regular meetings: Second Wednesday of every month. Location varies.
For information contact Vi at (760) 949-6775, or e-mail BillHerold@aol.com
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"Say Cheese!" With smiles, Polio Survivors Plus (PSP) invites all polio survivors to enjoy the Orange County Fair on July 15th; to participate in "A PPS Management Forum," to be moderated by Rick Van Der Linden on July 23rd; and to review the "Truth about 'Tooths,'" presented by Andrew Lin, DDS, at PSP's last general membership meeting.
"Say Cheese" at the O.C. Fair
All polio survivors are invited to at the Orange County Fair on Tuesday, July 15, 2008. The Centennial Farm area of the Fair opens at 8a. Free entertainment, activities, select rides and fun await anyone who wants to enjoy the Fair between 9:30a to 12 noon. If one has the stamina, any and all PPSers can stay to enjoy the rest of the Fair until it closes at 12 midnight. The complimentary admission tickets permit Fair attendees to exit and reenter the O.C. Fair the entire day.
This year's O.C. Fair theme is "Say Cheese!" with a focus on cameras and technology. For further information and to obtain a complimentary entrance ticket and parking pass, contact Sue Lau.
"Say Cheese" with Rick
You can smile even more when you know how to properly manage your post-poliomyelitus because you can learn energy-saving techniques; re-visit methods on how to "preserve to conserve;" and share experiences about durable medical equipment, as well as ADL aides. Rick Van Der Linden, who is the editor of "PPS Manager, will moderate "The PPS Management Forum." If we're fortunate, Rick will even launch the July 23rd's meeting with a musical performance at 1:30-3p in Clubhouse 3 of Laguna Woods Village.
For more information and gate entrance authorization, phone Dean at (949) 859-7372 or email efminder1@cox.net.
About Rick Van Der Linden:
Rick, who was born in Long Beach, CA, was raised on a dairy farm and later married his sweetheart, Sandy, right out of high school and who, to this day, sings duets with him. They raised three sons (who became an engineer, nurse and like Rick, a machinist with his own business), and who produced seven grandchildren.
Rick contracted polio in 1953, that left him with a slight weakness, but with a determination and spirit that credits him with the ownership of a successful machine shop that he ran into the 1990s, but when he started to experience the late effects of polio, Rick optimistically modified his life, started on bi-level therapy to treat hypoventilation and became computer literate, also taking on a few hobbies, like writing; playing music; making miniature things (like for dollhouses); and spending countless hours to help fellow polio survivors with the production of the "PPS Manager," in print and electronic formats. PSP's upcoming program welcomes Rick as July's forum moderator.
"Say Cheese" with "The Truths About 'Tooths'"
Rancho Los Amigos National Rehabilitation Center (Rancho) purports that there are approximately 1.6 million people who are polio survivors with 800,000 who have PPS, almost all of whom are 55 year-of-age and older. These polio survivors who seek dental care, can be seen at the Dental Clinic of Rancho. In 2005-6, Rancho's Dental Clinic accommodated 156 polio patient visits, noted program speaker Andrew Lin, DDS.
Some specific clinical considerations for PPSers include: impaired breathing patterns, fatigue, potential for injury, ineffective airway clearance, impaired swallowing, impaired mobility, etc.
It's recommended that for dental patients who have PPS, to avoid long appointments; morning appointments are better than afternoon appointments; appointments should be made on a "best day" of a week; and arrangements for home health services should be sometimes made in lieu of anxiety-inducing dental office visits.
Some patient management considerations include watching the position of exam chairs, especially if a PPS patient has reduced functional capacity of the respiratory muscles and it's important to have spare pillows available to make PPS patients as comfortable as possible to prevent agitation during appointments. The PPS patient may need to be given rest breaks every 15 minutes or so. Avoid making the patient to hold his/her breath for more than 20-30 seconds. Diaphragmatic breathing is encouraged and permit extra time for a PPSer to ambulate, transfer and sit/stand.
In conclusion, special attention needs to be paid to PPSers with chewing, speaking and swallowing challenges. Some commonly used pain control medications must be avoided. Patients with PPS need specific considerations with regard to appointment scheduling, patient seating, office temperature control and stress avoidance.
A PPS tailored brochure was created for and distributed at this PSP presentation. It contains information on the prevention and oral hygiene considerations; diagnostic considerations; recommendations for dealing with swallowing problems; pharmacological considerations; and various adaptive equipment that is available and/or designed for assisting a person with the self-dental care. It's important that a PSP patient has good communication with his/her dentist and that a good self-care maintenance program is part of a PPSer's routine, which should include dental visits 2-4 times per year.
___________Next meeting:____________
July 23
Rick Van Der Linden speaks
___________________________________
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
--∞∞o∞∞--
Dr. Torres-Gill said what?
Good afternoon Rick,
I must say your May issue of the PPS MANAGER certainly startled me into some anxious moments, tossing nights and reappraisal of my respect and treatment of my PPS condition.
What did it for me was starting out reading, highlighting then marking in red, sections of the article by Dr. Fernando Torres-Gil, the comments from the Escondido Post Polio Group about fear of falling and comments in the Blue Whale Project.
In fact the comments were so startling (freightening) to me that I immediately set the newsletter aside, let it sit for a day, re-read the highlighted sections then ran(literally) off to the Coachella Valley PPS on May 9th to see what Joe Cayama and Barbara Hall and other meeting attendee's had to say about my highlighted sections.
My first section was where Dr. Torres-Gil mentioned Pilates as his preference for exercise with NO machinery. Not familiar with Pilates meeting members enlightened me to it being similar to yoga or Tai Chi.
Although my leg strength is severely lessened I've continued to push with walking(very limited distances) dumbbells and ab roller.
I tried to find an exercise program on the computer for Pilates and it had so many versions many with machinery that I need to ask you if you have any access to a copy of the version Dr. Torres-Gill uses.
I can't think of a better informed advocate of an exercise program for PPS victims then one that has PPS and is a Doctor.
The second section right after Pilates referred to "Few survivors to this point have lived past 65 years of age."
Having just turned 71 this comment is pretty much the one that made me put the paper away for a day until I felt brave enough to face it again. The words "exaggerated form of premature aging" and leaving us at 65 more like 80 to 85 years old certainly gave me cause to understand why he indicated we needed to "take special care of our emotional state.
I was much more in an "emotional state" after I read his comments then before. Yesterday I felt at 71 I was feeling more like at 58 and today I'm told I should realize I should be feeling more like 91. Now that takes some thought!!
The third section I had highlighted for discussion was on your page 5 under Blue Whale project where she indicated "adaptation to daily living to preserve the remaining motor neurons in our bodies "50% -75% were lost during the original Polio attack." Now doesn't that give me a good feeling! Since having polio in 1954 at the age of 16 I've been an advocate of physical exercise ie lifting weights, doing pushups, running, getting through 6 years of Army Reserve training, trying to live a normal healthy life and now I'm told I may have had only 25% of the normal neurons necessary to do these things.
Obviously my first question at our meeting in this section was how do I go about generating more neurons.
I was told I can't! Boy that sure doesn't help my emotional state.
I was told there originally was one neuron for each body muscle. When the polio attack destroyed some, the remaining had to each pick up additional muscles. Thus each remaining neuron must now carry many more then one muscle as was originally designed. Therefore, this causing the heavier burden on the remaining neurons and with this overload the increased resultant fatigue, weakened leg muscles, and apparently premature aging.
I was feeling pretty good about my aging chances with my mother passing at 94 and my dad still alive at 98 but it sure sounds like this Polio thing sure cut back on my odds. I was also led to believe if I reached the age of 55 without PPS symptoms, I probably wouldn't have any, which obviously is not true.
The fourth and last section that got me thinking and highlighting was on page nine under the Escondido section referring to fatigue and falling and one of the greatest risk factors to falling being "the fear of falling." I found myself easily relating to this. I too did take a couple of very serious falls one to my temple from a porch and one backwards onto cement. At one point after visiting a bank, I found my mind would not allow me to step down off a curb. I had to go back into the bank and get a young assistant to help me step down from a four inch curb. It then took a couple of visits to a psychologist to overcome that fear.
Well Rick, thanks for bringing me so much to think about with your "informative" May issue.
I would appreciate any help you could give me with getting a copy of Dr. Torres-Gil's Pilates exercise program.
It sounds like I need to slow down a bit and I already find myself resting more. Got to rest those "neurons!"
Sincerely,
Joe Marsh, Coachella Valley PPS Group
Hi Joe.
Thanks for writing. Sorry for your discomfort. You bring up some good points.
Point 1 – Exercise: Some people exercise, some don’t. I tried it for a while and found that my bad habit of being a musician and a living, breathing human being is enough exercise for me. Many people enjoy getting into warm water and I would too if it was convenient. I would stretch, however, not necessarily workout. If Pilates (I don’t know what kind) works for Dr. Torres-Gil, it must be pretty easy to do.
I agree that Dr. TG must be a good source of advice, but we’re all different and we all evolve as we age. His advice could change over time.
Point 2 – Early Death: I talk to PPS people all the time who are well over 65. 90s is not all that uncommon. In fact, I don’t see any reason why we shouldn’t live as long as anyone else, as long as we manage ourselves properly.
That last bit is very important – as long as we manage ourselves properly. The two most likely causes of early death are doctor related. One is treatment with painkillers and antidepressants, and the other is mistreatment (or lack of treatment) of PPS breathing disorder.
For more on this, read Gladys’ response below. ***
Point 3 – Neuron loss and aging: Theoretically, the average loss due to the poliovirus is 50%. Some lost, some damaged. Your mileage may differ :-) People with 100% probably never use them all at any given time, so they wouldn’t notice if 25 or 50% were missing. The main difference for those of us who “got by” after polio is that we were always working at the upper limit of our physical ability. You might compare us to a 100% person running all the time, while we are just walking. Naturally, if that were the case, over a lifetime they would get as worn out as we would.
It should also be noted that there are three theories about the reason for PPS. The other two go beyond broken wires by adding chemistry and biology into the picture. It’s my belief that the loss of motor neurons may be irreparable (though to a certain extent within our power to slow the loss by proper management) while the later two are greatly affected by our emotional state. That’s why it’s important to get all the information, believe what works in our favor, and throw out the rest.
<<I was also led to believe if I reached the age of 55 without PPS symptoms, I probably wouldn't have any, which obviously is not true.>>
I believe the PPS is like prostate cancer. We all have the seed (well, since girls might be reading this, you know what I mean). If you live long enough you’re going to have a problem. Some sooner, some later, some more severe, some less severe.
Another thing to consider is the pain factor. Half of the people with PPS feel pain early and often, and half don’t. The half who don’t are at higher risk of neuron loss, muscle atrophy, and joint deterioration.
Point 4 – Fear of Falling: Sorry to hear about your boo-boo. Similar feelings got me started using a scooter to save strength in my legs. Later, getting my breathing squared away improved my focus and overall strength. Now falling is not the threat it was ten years ago.
Conclusion: Whether I say it, or Dr. Torres-Gil says it, or any other polio survivor or PPS wise doctor says it, you have to decide if the advice suits you. Does it fit your body/mind? We polio survivors have a lot in common, and yet we’re all as different as ... Human beings. Go figure :-)
Note: Dr. Torres-Gil will, hopefully, be speaking in San Diego in the near future. Wouldn’t it be great if we could ask him in person?
Rick.
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*** Gladys Swensrud responds to Joe’s question regarding Dr. Torres-Gil’s reference to few polio survivors over 65.
Gladys writes:
When Joe read the following passage in my notes, I believe he interpreted it differently from what my understanding was of Dr. Torres-Gil's statement. I wrote that, "Few survivors to this point have lived past 65 years of age. We are facing an exaggerated form of premature aging, leaving us at 65 more nearly representative of someone 80-85 years old."
What I heard Dr. Torres-Gil say was different than Joe's interpretation of what he read. Joe read it in a literal sense that there are few of us living past age 65. However, what I understood Dr. Torres-Gil to say was that with the throngs of Baby-Boomers coming up the pike, from this point forward there will be many, many more polio survivors who will be living into their 70s and 80s with PPS. Since we are just on the cusp of retirement of the Baby-Boomer Generation, those of us turning 65 are going to quickly multiply, which will provide a new challenge to healthcare professionals.
Dr. Torres-Gil is a very active and vital person. There is little doubt in my mind that he intends to live into his 80s and, hopefully, 90s. He is managing his health wisely, taking care of himself physically, and guarding his remaining neurons. I believe you would consider him an exceptional PPS Manager!
At 60, I know that I live in a body much closer muscle-wise to that of someone my parents' age. We have a 90 year-old family "dad" who walks a mile to and from mass every day with no particular problem. It would not be wise for me to follow in his footsteps. You know me well enough to know, Rick, that I am not a couch potato; however I am a very effective "PPS Manager." I choose to swim as my form of exercise. I don't do it with gusto or speed...I do it to have fun and relax. The good thing I have realized from swimming is that you can do as much or as little as you wish on any given day. Some days just floating back and forth suits me perfectly.
Joe need not be startled or frightened. What is most important for each of us is to understand our limits. From one person to another those limits certainly will vary greatly, so what works for one person won't necessarily work for another. Even more importantly, as you intimated, as time passes we continually reassess where we are and how things must change. In that respect, we are just the same as the rest of the aging population. What we are doing to stay at our physical best now will require change over time.
It sounds to me like Joe is in the process of re-evaluating his present situation. There is nothing wrong with taking a look at how things are working and defining how they might work even better. I can tell Joe is conscientious, and he is taking this assignment seriously. Nothing more than that could be asked of any of us. Knowledge is the key to a healthier future.
Dr. Torres-Gil has generously offered to come to San Diego to speak. When that is scheduled, perhaps Joe can attend to personally ask Dr. Torres-Gil about the Pilates program he uses in his fitness therapy. Knowing what I know of Dr. Torres-Gil, he is protecting his remaining neurons with great concern for years and years of use yet to come.
Gladys
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Rick
I got polio in 1952. I have had PPS for the last 3-4 years. Do the neurons ever stop getting weaker or do they just go to zero?
Walter
Hi Walter.
That’s a good question with a complicated answer.
It’s complicated because there are two basic kinds of polio survivors. Type one feels pain early and often, while type two doesn’t.
Fifteen or twenty years ago there was a theory going around that we would go back to the way we were when polio was at its worst. I don’t think that has to be true in every case, though it seems to be true in some.
I compare PPS to old house wiring. If you continuously put a heavy load on it, it starts to crystallize and break down. Eventually connection is lost. If you don’t use the circuits at all, the muscles are lost. It’s a balancing act.
The key is to know how to gage the right amount of activity. The general rule is: if an activity causes pain, twitching, or fatigue, do less next time. These signs are listed in order of (usual) occurrence – first pain, then twitching, then (sometimes 72 hours later) fatigue. Since pain is the early warning sign, we can use it to reduce muscle function loss due to PPS by stopping as soon as we feel pain.
If you are a type one (feel pain early and often) don’t ignore it. Use it.
If you are a type two (don’t feel much pain) you could try to develop sensitivity to pain.
The bottom line is this: We all lose muscle function as we age. It’s a fact of life. Polio survivors start the aging process with less to lose. We have to manage ourselves carefully to limit the loss any way we can. Early detection and management can slow the loss. We must not let our type “A” brains do unnecessary damage to our bodies. Assistive devices such as power chairs, electric scooters, and bilevel ventilators help slow the loss and keep us functioning into our golden years. Going on disability as soon as possible is a must.
Finally, stress has a lot to do with it. Learn all you can. Know more than your doctor. The more you know, the less you have to worry about.
Rick
“If you fight it, it will fight back.”
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Hi Rick,
I continue to do very well on my VPAP ST. Thank you again for your help and advice with set up.
Just read your newsletter. It is good to see that Carol Thompson is talking about polio breathing problems with the Blue Whale Project.
I'm enjoying reading Walt Balenovich's Travels in a Blue Chair http://www.bluechairbook.com/
Metta,
Mavis
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Hi,
Received the newsletter yesterday and am so impressed with what you all are doing for we Polio Survivors.
…
Thanks for keeping the flame burning.
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Hello Gladys and Rick...
Wow.. I could not believe that I was reading exactly what is needed in this country. Gladys item and the Blue Whale Project so important
for more medical professionals to read.
…
As always thank goodness I met you both.....
Hils.
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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. Thanks to Betty & William Thompson, Lisa Chan, Norma & Ralph Snow, Vivian Miller, A. Segal, Sally Perez, Gloria Rhodes, Anne Newsome Davis, Rick & Lenora Kneeshaw, Edward & Kirk Pearson, and John Kirkpatrick.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@adelphia.net
Information contained in this newsletter
is not intended to be a substitute for professional medical care.