May 2009
In this Issue:
The Roosevelt Institute
It Works for Me
Be Prepared
Letters and much more…
Meeting reports:
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FROM THE EDITOR
Hi Fellow PPS Manager,
It’s a fact that only a small percentage of PPS folks are able to attend meetings. Fortunately, you don’t have to leave home to reach out and touch someone. So, it’s no wonder that the newsletter is an important means of social interaction.
In this issue you’ll find some particularly interesting meeting reports and letters. If you see something you’d like to respond to, or if you have a particular question, fire away. That’s what we’re here for.
On the other hand, those of us able to make it to meetings find fulfillment in helping others by directly sharing our successful (and sometimes not so successful) PPS management experiences.
You have to be there to hear the laughter, see the “aha” expressions, and share the joy of discovering you’re not alone.
Live and learn is the credo, and, since there is a lot to learn, it stands to reason that there’s a lot of living to be done.
Let’s get out there and do it.
Have fun .... Rick
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From Ten Years Ago
The following is from the 4/1999 issue of the PPS Manager newsletter. Please contact the Roosevelt Insitiute for the latest schedules and information. In the next issue, look for a report on the April 2009 PPS convention held at Warm Springs.
THE ROOSEVELT INSTITUTE
"To empower individuals with disabilities to achieve personal independence"
Founded by Franklin Delano Roosevelt in 1927, Roosevelt Warm Springs Institute for Rehabilitation (Roosevelt Institute) today provides comprehensive medical and vocational rehabilitation services for people with stroke, spinal cord injuries, brain
injuries, post polio, mental retardation, learning and other disabilities. The Roosevelt Institute is located on a beautiful 940 acre campus in Warm Springs, Georgia about an hour south of Atlanta.
Post-Polio Clinic - A specialized program for Post-Polio patients that includes a medical evaluation, muscle test, functional evaluation and other diagnostic studies.
Recommendations may be made for bracing, adaptive aids and home exercise programs.
At a recent SD PPSG meeting Miriam Easton reported on her visit to Warm Springs.
The clinic sees an average of 12 to 16 patients on Mondays and Tuesdays of each week. The rest of the week is spent getting the diagnostic tests needed and whatever orthotics are recommended. They try them out for a good fit before seeing the doctor a second time. Then he will review results of tests, and make recommendations for follow up exercise and care at home. Appointments are being scheduled approximately 6 to 8 weeks in advance. Most insurance coverage is accepted but people with an
HMO should check. Medicare is accepted.
According to their literature, they discourage any exercise for people with muscle strength below grade three. For stronger muscles, exercise should be gentle and non-fatiguing. Exercise no more than three times a week. If it takes longer than 10 minutes to
recover you’re doing too much. Dr. Peach recommends aquatic therapy to improve range of motion, flexibility and ambulation; and decrease pain. People with PPS also can stretch tightened muscles, but not overstretch them because some muscles need to stay tight to work".
Everything is wheelchair accessible. Housing on campus is about $20 a night. Meals are less than $3. Great recreational facilities are available in a very serene location.
Warm Springs is located less than 2 hours from Atlanta, Ga. You will be picked up at the airport. You can bring your own wheelchair or rent one.
For more information call:
(706) 655-5322
For questions related to Post-Polio Syndrome or for more
information, write to:
Roosevelt Warm Springs Institute for Rehabilitation
P.O. Box 1000, Warm Springs, GA 31830-0268, dial 706-655-5000, or
visit http://www.rooseveltrehab.org/
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IT WORKS FOR ME [from the PPS Manager 3/1999]
I have a lot of upper body weakness, so I need to support my head whenever I can. I have a high back seat on my scooter and computer chair. They both have arm rests adjusted to fit me just right.
My truck was a bit of a challenge because there is no built in headrest or right arm rest, so I got a “console” that sits in the center of the bench seat and gives me a place to rest my right arm.
Then I got a “C” shaped neck pillow and Velcroed it to the back window at just the right height and location which not only allows me to lean my head back, but it also cups my head to reduce the side to side stress from rough or curved roads.
Rick
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Question
My husband thinks I’m lazy and he’s always pushing me to do more. I know I shouldn’t but it’s so hard to stop when I’m already having a hard time convincing myself that I have a problem. I just don’t look as bad as I feel. Is this common for PPS?
Answer
It’s very common. In fact, it’s one of the real roadblocks to good management - convincing your helpmate when you are already having trouble convincing yourself.
Education is the key to solving the puzzle. If you both attend PPS meetings, read newsletters and/or get info from the internet you can learn how to support each other. A shared problem needs a shared solution.
Note: This issue’s Q&A was distilled from several online discussions - ten years ago.
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“Looking good is one of the symptoms of PPS.”
REVanDerLinden
[First published in the 4/1999 issue of the PPS Manager newsletter.]
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Here at the ranch, it’s my good fortune to have a family of Red Tail Hawks nest in the tallest Eucalyptus tree a few hundred feet from my front porch. Occasionally I see one of the parents carrying a rabbit or other rodent to the nest. One day late in April I saw one carrying a snake, signaling the arrival of spring.
Looking around at the fields, once covered in yellow wildflowers, I see a shade of brown
warning of yet another season: wildfire season. This winter has been hard on much of the country, but here in Southern California, summer and fall bring the danger of smoke and fire. Now is the time to get prepared. Think about food, water, masks, batteries for your assistive devices, medications, but most of all, an escape plan.
There are disabled registers in many states. You put yourself on a list and should disaster
strike, theoretically, rescue workers reach you first. A word of warning: Don’t count on it. The bigger the disaster, the greater the panic, and the less likely one person in a wheel chair is going to get helped. Talk to friends, neighbors, and family members. Make up a phone list. Think ahead.
The life you save could be your own.
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“The great man is he who does not lose his child’s heart”
Mencius (343-288 B.C.)
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MEETING REPORTS
Our March meeting was a treat for the entire group and one we aren’t likely to quickly forget. Our guest speaker this month was San Diego Police Officer, Gary Gonzales, who has been a guest speaker with the San Diego Police Officers Speakers’ Bureau for many, many years. We asked him to address the problems of personal safety for the disabled community, and we were furnished with a comprehensive presentation on multiple, related topics.
We found Gary just a nifty, all around personable guy. He captured our attention from the onset by telling us a little about his youth growing up in New Mexico. And he summarized his 16 years as a police officer – first in LA and then for the last 13 years with SDPD. He has a Bachelor’s degree in Criminal Justice, and completed his Masters in Police Administration.
Officer Gonzales opened our discussion by asking a series of questions, which elicited responses that helped him tailor his replies to our exact needs. He first wanted us to list the reasons why, as polio survivors, we might feel reason to be concerned for our personal safety. Some responses were as follows:
• Some of us are smaller in stature so feel a bit like easy targets.
• We know we have physical strength limitations, so being disabled puts us at a distinct
disadvantage against able-body criminals.
• The inability to escape (flee) danger is limited by our mobility issues.
• Owning a large dog or gun for protection is wrought with as many problems and hazards as it affords us advantages.
Officer Gonzales told us that self-protection, created by following basic personal safety suggestions, is the most important thing we can do to help ourselves. He used the example of how your hair stands up on the back of your neck and sends shivers down your spine when you feel something just isn’t right. He explained that sensation is caused by discomfort of the unknown. It is an internal warning sign. He asked us to always heed that internal signal and not ever be complacent or ignore signs of danger that could put us in jeopardy or make us vulnerable. Just as everyone feels uncomfortable at the thought of entering a dark alleyway alone, whenever you experience that same feeling of concern for your personal safety, you should always follow your intuition.
He reminded us that the bad guys are opportunists, always on the look out for a chance to do wrong and get away with it. They don’t commit crimes to get caught, so they are seeking targets that put themselves at risk. Gary wanted us to remember that we have the ability to control some of our vulnerability by self-awareness of our surroundings and actions.
He gave us some simple techniques that can render criminals less likely to want to take advantage of you. First, always be aware of those who are around you. Look people in the eye, and speak to them, so they’ll realize that you have a picture or description of them in your minds eye. Robbers don’t like to be identified. If someone is walking behind you and you feel uncomfortable, you can always take control over the situation by turning, stepping aside and offering them an eye to eye greeting. You’ll make eye-to-eye contact, and they’ll know you have seen them face-to-face.
Officer Gary also suggested that you can use something as simple as a key to help protect yourself. A single key can scratch or injure someone who might attempt to accost you. If you are within range of your car, a car alarm attached to that key can call attention to your position; so merely holding onto your keys can be a good defensive tool. In the case of those who carry a cane or crutches, we have yet another tangible tool at our disposal to use if need be.
He expressed the importance of mental drills to prepare you for an emergency. Just as the military or police officers constantly drill to instinctively handle any emergency situation, or just as the general public is asked to prepare and practice for an earthquake or other natural disaster so we know what to do in times of crisis, citizens also need to run through a planned scenario for self protection in the event it is needed. Just thinking or imagining how you might react could be the ticket to action and reaction if the situation arises. Gary stressed that we must know our limitations and how we can utilize them to our benefit. You don’t have to be big and strong or have a lethal weapon to protect yourself. And don’t forget that when you have or own a weapon like a gun, with
that ownership comes tremendous responsibility. Be sure you are trained to know how to use it safely. Also learn the laws about gun use and how they will affect you.
Here are some handy suggestions to initiate around the home:
1. Use door (deadbolt) and window locks. If you move into a house or apartment that was previously used by others, change the door locks as soon as possible. A stranger having a key to your home is an open invitation for problems.
2. Keep window curtains pulled at night. Although you might not be able to see out easily into the darkness, those outside can see into a lit house very well. Criminals are looking to see if a home robbery will be worth their while. Your big screen TV or fancy nick-knacks on the shelves are a real lure.
3. Break down boxes for anything you purchase or receive as a gift. Why set boxes on the curb to advertise to anyone who drives buy that you have a new computer or stereo system in your home?
4. Shred anything that identifies you as living at that address or has personal data that can be stolen, compromising your personal information. Take identification theft seriously!!!
5. Don’t ever give out personal information to anyone. As common sense as that sounds, how many of us have answered telemarketer questions about the number of people in your household and their ages or occupations. Always suspect that someone is trying to identify you at that address and who exactly lives there with you. By saying two family members are full time students and you and your spouse work, you are providing criminals with the exact information they need to know when your house might be most vulnerable.
6. Be aware that simple things like your name on the mailbox, work sticker identification tags on your cars, etc, etc, announces info that tells much about you and who lives in your home.
Criminals are looking for any clues they can find, so do not allow them easy access to who you are.
If you go away on vacation, Officer Gonzales reminded us that, if asked, the police department does home checks. RSVP volunteers will drive down your street and look at your house. If anything seems out of place (doors open, glass broken, etc.) they will place a call and a uniformed officer will be sent to check out anything looking suspicious. He also cautioned us to let trusted, close friends, family and/or neighbors know we will be gone so they can keep an eye open and, if necessary, have access to enter to check things out for us.
He noted that lights should be on timers to mimic your regular schedule rather than left on all the time. Motion detectors are also useful to install. Keep shrubbery close to the house cut low so people looking to break in don’t have a protected place to work to get your window open and gain access to your home. Remember to lock upper story windows as well. A trash can pulled up next to the side of your house is an easy way to gain access to a second story window.
Gary also shared that the SDPD Community Relations Department will come out to do an at home security survey to determine if you have specific vulnerability problems in and around your home.
That type of service helps make you aware of important items requiring your attention.
As a quick review, Officer Gonzales reminded us that since we don’t want to live in fear, we should be prepared mentally for any situation. To react correctly in times of stress, it is important to practice mental scenarios of how an actual situation might play out. He told us to be aware of our surroundings at all times and not to place ourselves in a vulnerable position.
The May 9 meeting has been canceled due to flu worries.
___The next San Diego meeting:___
May 9 Meeting Canceled
_______________________________
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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No Report Submitted
_____The next meetings:_____
May 8
June 12
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2nd Fridays at 10 AM at Portola Community Center
45-480 Portola Ave, Palm Desert CA Park in rear.
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Reported by Marilyn Loba
At our April 14th meeting, we welcomed Marmaduke Loke of Dynamic Bracing Solutions.
Marmaduke began by sharing that his Aunt Helen had polio and later PPS which is one of the reasons that he began his career in bracing. He has always liked to work with his hands and to help people. Marmaduke has been asked to participate in the Post Polio Conference at Warm Springs in late April. He will give a 2-hour lecture including case studies and participate in two panel discussions.
Marmaduke started Dynamic Bracing Solutions in San Diego. He later worked with Dr. Marney Eulberg in Colorado to find a bracing solution for her. She began as one of his biggest skeptics but she now walks with an almost normal gait. Locations of his practice now include San Diego, Denver and Phoenix. He is currently training 4 orthotists in Colorado but the bracing solutions are so customized that growth must be done slowly. Each brace is custom made to the patient.
Dr. Halstead has said that Dynamic Bracing is the future of bracing. Schools for orthotists teach principles that don’t make sense but change is always difficult. Conventional bracing provides support to the back of the knee whereas Marmaduke’s brace provides support to the front of the knee. Braces should extend under the entire foot as there are 26 bones and 36 joints in the foot to support. The dynamic brace works almost like a prosthesis and allows sensation of the foot and the leg. The goal is to realign body segments all the way up. This is why each brace is custom made to align each patient’s body although it is made of basically the same materials following the same principles.
Studies have shown that after dynamic bracing there sometimes is a reversal of muscular atrophy. More study is needed to find what is causing muscle groups to seem stronger after bracing although there is no guarantee that muscle strength will return. The goal is to improve forward motion by using gravity to advantage. By realigning the body, there will be less use of the now overused muscles, which will conserve the muscle strength which the patient currently has.
The first goal of dynamic bracing is standing balance. If a weight line goes straight down from the ear, the pelvis should be in front of the weight line. However, people who have walked in a certain way for many years need to learn to trust the support with the new brace. Patients must have commitment to let the bracing realign the body. It may take months of work to get used to the brace but by solving lower body problems, pressure is taken off the arms and shoulders.
The process begins with a thorough assessment, which starts with oral documentation. This is followed by video filming which is studied frame by frame. Body compensation is studied followed by manual evaluation. Each patient must be psychologically ready to put forth the effort to let the bracing work. Security issues must also be addressed as the patient must learn to trust that the new brace will provide needed support. The final stage of the assessment is a mechanical report and solution development. Each brace is highly individualized to improve static and dynamic balance and enable increased walking efficiency. Prices are determined by the complexity level of each person. Insurance may cover some of the cost.
Dynamic bracing requires COMMITMENT! Amazing results can be seen in patients but it doesn’t happen overnight. However, when you do it right, it takes less effort. By reducing stress on the seemingly unaffected muscles by realignment, the muscles are able to rest. By resting our muscles it is hoped that deterioration will be slowed allowing continued mobility.
Marmaduke has spent years in the development of dynamic bracing. He is very empathetic in demeanor and cares for each patient. His goal is to help each patient be able to live to his/her full potential. Marmaduke’s long-term mission is to train orthotists all over the country to provide individual comprehensive polio walking solutions.
San Diego Dynamic Bracing Solutions is located at:
4373 View Ridge Ave Suite A,
San Diego, CA
92123.
Phone: (619) 972-3853
Email: PolioBracing@aol.com
Website: www.DynamicBracingSolutions.net
We would like to thank Marmaduke for his informative and entertaining presentation.
Some of you may know that our wonderful friend, Kathleen Murray, formerly of the Salk Institute had cancer surgery last Friday. I have been told that the surgery went very well and that she is in good spirits. A full recovery is expected.
Also, please keep Ken Lee from our PPS group in your thoughts and prayers as he broke his leg in a fall. I hear that he is anxious to be up and around soon.
Our next meeting is June 9th. Our own John Hagee will give a presentation about his trip to the Warm Springs symposium.
Marilyn
______The next meeting:______
June 9
____________________________
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.
We had new members at our April meeting. It made for a great meeting. All the regular members were eager to jump in and offer encouragement and advice.
We were all in the dark at one time – doctors making us feel crazy and worthless. It’s good to be there for the folks coming up behind us.
Bunny and Betty are planning the July picnic. We’ll do the usual indoor potluck, live music, and fun at Valley Wide Recreation on Esplanade in San Jacinto. Sunday July 12, 1 to 3 PM. Setup begins at noon. For more info, call Bunny at 766-7118
Breathing and sleep questions will be answered at our June meeting by guest speakers Dr. Bradley Schnierow and Melanie Arledge. Although Dr. Schnierow's San Diego Sleep Medicine clinic has been mostly involved in fibromyalgia and a variety of sleep problems, he does treat a few PPS patients at his sleep clinic in the La Jolla. The recent addition of Mz. Arledge to his staff will create a greater focus on PPS. Visit www.sleepSD.com
Have fun … Rick
_____Our next HAPS meetings are:_____
May 19
June 16 - guest speakers
____________________________________
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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Editor’s note: The Riverside group was 10 years old in May of this year. The first meeting, held 3/18/99 at the Riverside Easter Seals office, was attended by Judy Mahoney, Phil Black, Betty McFarland, and Rick & Sandy Van Der Linden. Also present was former leader Beverly McGaugh who reminded us of the importance of a positive spirit.
Thanks Beverly. You got us off to a good start.
____The next Riverside PPSG meeting:____
June 20
______________________________________
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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Our High Desert PPS group met in March for our usual round table discussion over a great
Mexican lunch. In April we had a guest speaker from Active Mobility and learned about some of the new products out there to help us live more comfortably.
The May 13th mtg. will be at Nick's in Spring Valley Lakes. June 10th, our meeting will be an open house, pot luck luncheon hosted by Alma Holman @ 14637 Lilac in Hesperia.
__________Next meetings:___________
May 13
June 10
___________________________________
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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"Ready, Brace, Go" is May 27th's program that will feature Montreal-born Marmaduke D.R. Loke, CPO, who plans to focus his talk on new bracing concepts and designs that can enable a polio survivor's ability to stand and walk more efficiently.
Having worked in the prosthetic and orthotic industry since the 1970s, Mr. Loke is the current head of Dynamic Bracing Solutions. His presentation will take place in Clubhouse 3, which is located at 23822 Avenida Sevilla of Laguna Woods Village, CA (with the nearest cross streets of Moulton Parkway and Calle Aragon, between the El Toro Rd. and Alicia Pkwy. Exits of the 5 Freeway).
"Ready, Brace, Go" will be a part of the 1:30-3:30 p.m. Wednesday meeting for Polio Survivors Plus' members and guests.
Some documented benefits that will be discussed include better balance and security for PPSers who also enjoy skeletal realignment in three dimensions, functional gains and reversal of disuse atrophy. While being able to stand handsfree, Mr. Loke will also show how proper bracing can additionally enable polio survivors to have more efficient and natural gait appearances. Joint pain, fatigue, fall propensities, uses of assistive devices and the preservation of arm usage can be greatly reduced by proper bracing solutions.
Video examples will be shown of polio survivors before and after DBS fittings have been made. Mr. Loke's presentation will focus on the development of walking solutions, based on a more complex, sophisticated process that has been developed and that also includes an orthotic educational program which is designed to be part of the walking solution. By mastering new techniques a polio survivor can gain ambulatory efficiency.
PSP's previous program featured Huntington Beach Attorney Kara Rudin who provided a comprehensive overview on "Preparing For Incapacity." She charted the lowest cost of probate and filing fees to be from $8,320 on an estate valued at $100,000 to $89,635 for an estate that has a $3 million value. With a special packet of information, meeting attendees also received the POLST (Physician Orders for Life-Sustaining Treatment) form that was most recently revised on January 1, 2009. Attorney Rudin's presentation also included information on powers of attorney, advance health care directives, probate avoidance, nursing home care, special needs trusts and more.
Attorney Rudin's practice includes estate planning, health law and special needs law. She is a member of the Orange County Bar Association and works with he Health Consumer Action Center of the Legal Aid Society of Orange County.
Mark your calendar and save the date for PSP's Annual Summer Celebration. It's now set to take place on Saturday, August 29, 2009, at 12 noon to 4p. A surf and turf barbecue menu will include all of the fixin's for a memorable feast that'll be topped by fellowship and music.
___________Next meeting:____________
May 27
___________________________________
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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Medical Records
Sharon V asks: “How do you go about getting medical records from so many years ago when you had polio?”
Open question: Did you get your polio records? Let us know how you did it.
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Hi Rick,
Jack is doing much better since he has been using a Bi-PAP. He sees Dr. Weiss from Kaiser, who is a part of the neuromuscular breathing program that Gladys Swensrud worked so hard to get started.
Jack is not back to where he was in early October when the problem started, but we are out doing things in the community again.
Jill C.
Jill,
It takes time. My breathing was so bad that, by the time I got going on a bilevel ST there was a lot of ground to make up. Now, after 4 years of proper treatment, I’m still seeing improvements in my cognitive and creative abilities. My body is still lagging behind, but time management and other assistive devices help with those PPS problems.
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Dear Rick,
Congratulations on another outstanding newsletter. Your publication means so much to me as well as many others. I keep learning and learning.
Cordially,
Lois J.
Thanks, Lois. I needed that :-)
Rick
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Hi Rick
I just wanted to say thank you. Your newsletter was an answer to my prayer. I was feeling pretty low, and I asked God for some confirmation in my life. And 1 Hour latter I opened my e-mail and read your article on Giving Up and a Crooked Road. It was what I needed, and I took it as my confirmation.
So Brother Rick, know you and Gladys will always have a special place in my heart. Because of your love and dedication to all your brother and sister polio survivors.
I'll keep you guys in my prayers. So keep up the Good work. You’re making a difference!
Love, Jim Mihalik
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Rick,
10 Years?!?!
Where did all those years go? Wow!
And to think about our first meetings in Escondido...
You are doing an amazing job on this great newsletter.
The PPS community worldwide is better because of what you do.
I remember so many great times with our group in San Diego and the lunches too. Sending hugs and praises to both of you "Ricks."
My deepest respect....
Judy Sander
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Hi Rick,
Excellent Newsletter! [February 2009 online edition] Very nice instrumental, "Tomorrow's Promise" and verses in The Chinaberry Tree. Polio may have changed your life in many ways but it has not taken your creativity.
You may have polio but polio does not have you. Does that make sense?
I also like that beautiful photo of the desert scene.
Sincerely, Marion
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Hi Marion,
Thanks. You’re very thoughtful.
You’re right: PPS doesn’t have me. It’s very difficult to do this PPS work and not identify with the disease. If I didn’t have other interests, I’d be a lost cause. Proper management allows me to have other interests. Amazing!
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Reminder:
If you move or change your email address, don’t forget to let us know.
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THANKS
Thank you for reading the PPS Manager Newsletter. And, thanks for your help and your words of encouragement.
Special thanks to Sandy Van Der Linden for stapling and attaching the labels. Ann Howell for your graphics expertise. Thanks to Loraine M. Collins, Grace Huff, Robert & Lois Jackman, Mary & Donald Moffett, Jean Elston, Dynamic Bracing Solutions, Ray & Betty Billings, JE & JT Campbell, and Dolores Masturzo.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.