Inspiration, news and knowledge from Polio Experience Network
No. 27: November/December, 1998
Sharman’s News
..“VIEW FROM THE TANK OR FUTURES UNLIMITED, INC., TAKE FOUR”, by Sharman Collins
..“The Statistics of Being Human,” by Dave Graham
..NEW TREATMENT AVAILABLE IN SPOKANE FOR POST POLIO SYNDROME
..P.E.N. & ink Link
..Computer Connections
..Research the Medical Resources Available to You or “Eenie, Meenie, Minie, Mo…”
..P.O.S. Library
…………………………….Copyright information
Sharman’s News
from Sharman Collins
Happy Holidays! This promises to be a snowy winter. I hope you are all ready to curl up by the fireplace and keep warm. We are settled in our new home and looking forward to our first Christmas here. I am happily anticipating shopping at toy stores once again–nothing like a grandchild to make Christmas exciting!
We will not have a November or December meeting. Shriners Hospital will be remodeling and we will not have access to the auditorium. I am sorry if this is an inconvenience to you. In December, we have our Christmas luncheon to look forward to. The luncheon will be at the Shilo Inn on Saturday, December 5, at 11:30 a.m. We will be in the ballroom which has a beautiful view of Spokane. I hope you will all be able to attend.
In January, we will resume our regular meetings on the fourth Tuesday of every month at 6:00 p.m. Our first meeting of 1999 will a panel discussion. I am looking forward to seeing you in the coming months!
Shriners Hospital is located at W. 911 5th Avenue. There is easy access from the free parking garage located under the hospital. If you are able to join us for dinner in the 4th floor cafeteria, please by there by 5:00 p.m.
Lots of love from your friend, Sharman 
VIEW FROM THE TANK OR FUTURES UNLIMITED, INC., TAKE FOUR
by Sharman Collins
As I write this, I am sitting in a trailer in Columbus, MS. Today was day 8 in a 10-day treatment program at Futures Unlimited. My goal for my fourth treatment here is increased endurance, strength and relief from tight muscles. And, Ed and I have been discussing my plans to downhill snow ski this winter! Pretty remarkable for someone who, a mere two years ago, spent 12 hours a day on a Bi-pap, wore a full-torso back brace, and used my scooter to ride from one side of the room to another. For those of you who are unfamiliar with the treatment offered at Futures Unlimited, Inc., let me give you a few pertinent details. “Futures” provides out-patient therapy and rehabilitation primarily for clients with post-polio syndrome, spinal cord injuries, cerebral palsy, head trauma and developmental disorders. The clinic is directed by Ed Snapp, P.T. He is presently training Bob Wessel, P.T., and Jackie Hutchison, P.T., with the goal of opening additional treatment centers in the future.
The standard treatment program lasts fourteen consecutive days. There are six sessions of physical therapy per day. The modalities used are the most basic in physical therapy. They are heat, hydrotherapy, massage, passive exercise (patterning), light and deep sensory stimulation, positioning and other relaxation/stimulation techniques. Treatment is done under very dim blue and green lights. Talking is not allowed and the clients are encouraged to relax completely. Posture and gait training and mild exercise, when applicable, augment the treatment program and are demonstrated after clinic hours. What sets this treatment apart from others is the inclusion within the modalities of over a hundred specifically sequenced movements and numerous and various stimuli which evolved from research of human development. The movements and chronological sequencing are the result of over 36 years of study by Ed Snapp in the area of childbirth, embryology and developmental theory, plus trial-and-error experimental therapy with central nervous system disorders, namely, cerebral palsy, brain and/or spinal cord injury and other neurological conditions.
I arrived at the clinic the morning of October 12, and after a consultation with Ed, while Bob and Jackie observed, I was ready to start treatment. It was great to see Willie, Barbara, and Linda again. And there were a few new aides I hadn’t met before. The staff is truly unique at Futures–warm and caring. Willie did “pressures” on me and then a session of table work. Every time I have been to Futures, I start out the first week very stiff and sore. My tight muscles relaxed about day seven. After table work, I was positioned in the inner tube, listening to a recording of sounds in the womb. Then, a break for lunch. Several other patients with post-polio syndrome were undergoing treatment. Lorna Johannes from Gibson, Iowa, was there for her first treatment. Karen Treberg from Kalamazoo, Michigan and Dottie Lofquist from Glen Ellyn, Illinois, were receiving their fourth treatment session. Joe Mayer, from Sawyer, Michigan, had the distinction of being one of the first PPS clients treated by Ed, the first time in 1991. During the ten days I was there, two young men were treated for spinal cord injury and head injury. I enjoyed meeting all of them and hearing about their different backgrounds and progress in recovery. We had to be reminded several times to be quiet during lunch.
After lunch, we started in again with table work. Ed had changed some of the treatments this session–changes he feels will be more effective. There was more emphasis on upper body therapy. Pressures were done twice a day. After table work, it was off to the inner tube. I was comfortable in the inner tube from about the third day on. Before that, my body was tight and didn’t feel like twisting into a fetal position. When I have been to Futures before, the “tank” has been my least favorite therapy. The incessant quiet and stillness plus the irritation of the water is difficult for me to tolerate. And, the “view” of the white ceiling through the clear plastic cover with the condensation dripping down your nose is not the least bit entertaining. All one can see are shadowy figures occasionally moving around the room. But this session, Ed had the oxygen tank connected so the air was delightful–and the added bubbles felt great popping around my neck and shoulders. I was much more relaxed and my body reacted in very positive ways.
I felt a positive change in my energy from about the fifth day on. Wow! We’ll see how it translates to function once I get home. Also, my right leg and right shoulder feel more stable. At my final consultation with Ed, I promised, to be ever-vigilant about my posture. He gave me a new home program which includes exercises to prepare my muscles for snow skiing! How exciting!
How fortunate I am to be able to continue this therapy on an ongoing basis. I will return yearly in hopes of gaining more strength and function. Hopefully, in a few years, the therapy will be available in a few more locations.
Futures Unlimited (601) 327-7333
The Statistics of Being Human
by Dave Graham
I sat down to write a piece about the statistics of being disabled. Armed with some new data from a 1998 Louie Harris poll there was much to tell. I had downloaded some findings that I was sure would be of interest to you, our readers.
There is a large gap between the disabled and the able bodied in regard to employment, education, income and other “indicator” areas of life.
Could this be? I pressed on.
Only three in ten disabled are employed full time as compared with eight in ten non-disabled.
Is this really true? I became annoyed by what I was reading.
Twenty percent of disabled adults have not completed high school. Only fifty-four percent go to church once a month and a third go to a restaurant once a week.
On it went.
The data was painting a picture that was not at all familiar to me. Our typical post-polio support group meeting would certainly not support such findings. But, then again those of us who have survived polio, as a class, are somewhat different. As I postured and rationalized I became increasingly bothered by the broad generalities that are inherant in such a report.
At the very moment that I held the Harris poll in my hand, skimming through mind-numbing data, the phone rang. “Good evening Mr. Graham, …how are you tonight? Sir, would you mind answering a few questions about your preference of candidates.”
Perhaps it is the time of the year that causes my feelings to surface, making this process seem so detestable. With the November election upon us, one is increasingly subjected to the surveying of meddlesome pollsters.
As I begged off, I knew. My very existence as a thinking, feeling, living individual was being denigrated by my acknowledgment of the value of this data. I am not simply a white, married, disabled man with a wife, three grown children, two old cars and no dog. Like you, I am an individual with unique characteristics, with a very special history and most definitely a potential for the future.
When the world turns me into a statistic it numbs my feelings, blurring my very sense of identity. It is then that I turn to my Creator and He refocuses the picture. He reminds me that I am His, and He loves me just the way I am.
I take great comfort in knowing that God loves me intimately.
“Are not two sparrows sold for a penny? Yet not one of them will fall to the ground apart from the will of your Father. And even the very hairs of your head are all numbered. So don’t be afraid; you are worth more than many sparrows.” Matt 10:29
NEW TREATMENT AVAILABLE IN SPOKANE FOR POST POLIO SYNDROME
St. Luke’s Rehabilitation Institute (SLRI) recently had an opportunity to put together a comprehensive multidisciplinary program designed to treat individuals with post-polio syndrome.
The treatment team at SLRI consists of a physiatrist, occupational therapist, physical therapist, massage practitioner, behavioral therapist and case manager. The focus of treatment is on functional mobility, daily living skills, cardiovascular/strength training, pain management techniques/strategies, energy conservation, relaxation and sensory integration.
Typically, the treatment schedule is 6 hours per day, 5 days a week for 3 weeks. Each day consists of 1 to 2 hours of OT, 1 to 2 hours of PT, 1 hour of aquatics, 1 hour of massage and 30 minutes of biofeedback 3 to 5 times per week. This schedule can be modified to meet the needs of each individual and/or insurance criteria.
The focus of physical therapy is on range of motion, strength, sensation, balance, endurance, functional mobility, cardiovascular training, pain management, massage and aquatics. Muscular re-education is done to reduce the residual firing (muscular fasiculations) of the affected muscle groups. After instruction by the behavioral therapist, a person uses a portable sEMG (surface electromyography) biofeedback unit during exercise. Massage consists of light and deep effleurage techniques to the muscle groups affected by the post-polio. It also utilizes the mind-body connection of relaxation and Watsu to increase the effectiveness of the massage. Daily aquatics consists of Watsu therapy with emphasis on the mind/body connection and relaxation.
Behavioral therapy consists of autogenic (self) relaxation training and use of sEMG biofeedback to increase muscle awareness and control.
Occupational therapy focuses on activities of daily living and pain management strategies. This includes self care, home management, work tasks, strength, endurance, work simplification, and sensory integration. Work simplification focuses on energy conservation and activity modification to save energy and increase efficient use of the body while performing all activities. The portable sEMG biofeedback unit is used when performing lifting and other daily activities as a cue to relax affected muscle groups when they were not needed. Another therapy technique used in OT is sensory integration. This technique depends on your ability to take sensory information from your surroundings and from your own movements, put them together within your central nervous system and then use this information to organize your behavior.
Weekly conferences are held by the treatment team to discuss progress towards treatment goals, problem-solve any changes in the program and discuss need for additional treatment staff.
Follow up care is determined just prior to discharge. We would like to meet with the client at least one time per month for up to a period of six months.
We feel the benefits of providing therapy using a comprehensive team approach under one roof are numerous. Our team has been working together for 6 years and bring a variety of therapy approaches and backgrounds. This brings with it unlimited resources and allows a free-flow of information making therapy both holistic and fun.
If you are interested in this type of therapy program or have questions relating to costs, please contact our Case Manager, Penny Reid at 509-742-6289 or one of our treating therapists at 509-838-4771 ext.6882.
G.Keith Mackenzie, M.D. Shelley Scofield-Camp, Occupational Therapist Deanna Hawley, Physical Therapist Dennis Anderson, Behavioral Therapist Kaci Knaysi, Physical Therapist, Aquatics Alan Machtmes, Licensed Massage Practitioner, PTA
Penny Reid, Case Manager
P.E.N. & ink Link 
Family talk…
Have been having problems for at least four years and finally have found out I may have PPS. I guess it is good news as I have had some of the same symptoms as ALS. Thank God for computers. I could say that what a relief to find a support group with the same problems. I know that you know how I feel. I hope to correspond with some of your members in the near future. I am so overjoyed that I can’t even type. — T.M.
I am 71 yrs old. Have been married for 48 yrs. I raised 2 girls and a son. I got polio at the age of 4 yrs old. Now I have P.P.S. on top of having arthiritis. I use a walker around the house, but when I go out shopping I use a wheelchair. I have a private nurse who gives me baths and etc. I was given the Sister Kenney treatment when I was a child. My Mother told me I was going to walk instead of using braces and a wheelchair the rest of my life. And I DID walk. Now because of my age I am in bad shape again. But if I did it once I can do it again. To the P.P.S.survivors: DO NOT GIVE UP. — From D. J.
Looking for YOU?…The D.T. Watson Home for Crippled Children/Rehabilitation Hospital is looking for folks who were there with polio or later for rehab. We want families, aunts siblings, etc.; nurses, doctors, physical therapists, janitors, Salk vaccination volunteers and anybody connected with D.T. Watson in any way. Please contact me MacYid@aol.com or (818) 907-9456
For FREE: One cage-style carrier for transporting a scooter on an RV or vehicle. It fits on a square trailer hitch. Call Sharman, (509) 448-8517
Computer Connections
Besides our own great site , there are more coming on line all the time. One excellently organized and very complete site is “Post-Polio Syndrome Central” at http://www.skally.net/ppsc . It offers “Post-Polio Syndrome Related Internet Info and Support Resources.” You’ll find it a wonderful resource for articles, and can even participate in their weekly polls just for fun.
BUILDING YOUR MEDICAL TEAM
By Darlene Hansen
In the first installment of this series, I suggested the initial steps for putting together your medical team. I proposed that compiling your medical history and evaluating yourself physically, mentally, and emotionally is the place to start. Whether you’re just starting this process of forming a team or if you already have some health care professional in your corner, it’s never too late to re-evaluate and get the best help possible.
What are your values, priorities and goals? What are you willing to pay in terms of money and emotions? What type of people do you work with best – a partner or one who just tells you what to do? You need to know these things before you:
PART 2
Research the Medical Resources Available to You or “Eenie, Meenie, Minie, Mo…”
Choosing a doctor is not a matter of closing the eyes and picking one from the yellow pages. We can and should be wise in our selection of our medical team. Note the word team: two or more individuals working together toward a common goal. Don’t settle for not being part of the team. You are your own best caregiver. Who else knows your discomfort level, where it is and what brings it on?
Because we usually have more than one ailment or disease; because post polio is diagnosed by the elimination of other conditions; and because PPS seems to exacerbate symptoms we already are experiencing, we need to approach our research at the most basic level.
Step #1 ! READ!!! Don’t just gather information – read it! Read the basics about your known medical conditions and familiarize yourself with the range of treatment/therapies that exist for them. Knowledge is power. Accumulate your own medical files, reading and saving the best for future reference for loved ones and your team. Don’t just hop over the medical terms, look them up. Don’t assume you understand terms; physicians’ use of words will be the technical definition.
Step #2 ! Formulate a list of perspective primary care physicians. Primary care physicians may be someone in general practice, a physician’s assistant, an internist, a naturopath, or an osteopath. Good sources of suggestions are: your support group, friends and family, GINI directory (ask your PPS support librarian for a copy), the World Wide Web, or your insurance directory. Even a good health food store may be able to give suggestions. Ask! Get the best list you can and keep it. You’ll find many uses for it.
Step #3 ! Prepare a list of questions to ask of these physicians, or of their office staff. At the very beginning of your conversation state your reason for calling: “I am in search of a primary care doctor. Do you have openings?” Then ask questions, adding your own to these suggested questions:
1. Does your office accept ______ insurance? 2. Are you familiar with post-polio syndrome? Have you treated any PPS patients? How do you arrive at the diagnosis of PPS? If not familiar with it, are you willing to read some articles or do some research about it? 3. Concerning an initial exam – what kinds of diagnostic test do you routinely do? Will these be taken in your office? How long will these tests take? What is the usual fee for the office call? the tests? Do you have a sliding fee for those with limited income or lapses in their medical coverage? 4. Are you willing to refer patients to alternative methods of treatment? Do you refer to only specific specialists or will you consider any suggestions I might have? 5. In case of an emergency, how may I reach you?
6. What would you expect of your patients?
While respecting physicians’ knowledge and experience, we must convey to them that we also have faith in our own hard-won insights about what we need.
Step #4 ! Trust your own judgment and instincts and decide which physician you’ll try first. If you are not satisfied, try again. Shop around, be assertive, be an educator, and demand excellence. If you’ve gone to the appointment prepared with your health history and evaluation in hand and if you have chosen a physician that will truly communicate about your PPS concerns, you’ve found a ‘team-mate.’ Congratulations! Now you have a primary care physician that will evaluate and monitor your care, referring you to others that will be of help, generally helping you navigate through today’s specialized, complex health-care maze. That’s quite an accomplishment!
Let me share a personal experience. Two years ago I started having some weakness and pain in my arms, so promptly made an appointment with a physiatrist, skipping the basic steps. She asked who referred me, gave me a brief examination, suggested I go to massage therapy for tightness in my neck/shoulder area and said that would probably lessen my problems. She didn’t see enough symptoms to either call it PPS or not. I proceeded to an excellent physical therapist who worked on the area and with heat, massage and manipulation, and found and relieved some nerve entrapment. That gave me much relief for awhile. Within months the weakness and aches had returned. This time the symptoms were more complicated and my PT suggested I get some tests done by my new primary care physician and forward him the results. The tests were taken but weren’t definitive. All this time my symptoms were progressing and a family member suggested I see her chiropractor – couldn’t hurt anything. X-rays were taken and away we went! He found several problems in my neck and upper spine. He was thorough and took time to explain the x-rays. Even my untrained eyes could see the problems which probably resulted from my original bout with polio. The chiropractic treatment I received has aligned my spine, strengthened specific neck muscles to keep it in line, relaxed my shoulders and educated me in body positioning. My point?……
Step #5 ! Keep an open mind and try various approaches until you find what works for you. Ask members of your support group what has helped them, and try their suggestions. Just as our polio affected us differently, so too there is not one single therapy approach that will work for us all, but something is bound to fit your body’s needs.
In Conclusion
We have covered a lot of information. It was gathered from others’ wisdom, my own experience, and from several articles, especially two excellent ones which I encourage you to read:
“Finding Dr. Natural,” Vegetarian Times,Oct. ’97
“Looking for Dr. Natural,” Prevention Magazine, April ’98
To help your search for the best practitioners for you, Part 3 of this series will be a glossary of several specialties in both conventional medicine and alternative therapies.
Polio Outreach of Spokane Library
Your resource for information on post-polio syndrome and disability issues.
