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In This Issue:
“When Caregivers & Spouses Train Wreck
,” By Connie Kennemer
The P.E.N. & ink Link
“Pool Exercising,”
By Peggy Bran
WEB FINDS
“I’m Drinking From My Saucer”
“Another Bad Hair Day In Mississippi,”
by Sharman Collins
“The Scoop on Special Needs Trusts,”
by Lisa Copen
“My Neighborhood
Pharmacist”
by Dave Graham
Bits and Pieces
P.O.S. Library
Our Offer (for a mailed subscription)
Copyright information
Historian looking for Sr. Kenny experiences
I am a historian of polio who has written Dirt and Disease: Polio Before FDR (Rutgers, 1992), and a number of articles on polio, public health, and the public. I am now writing a book on Sister Kenny and her life and work in America. I would like to hear from former patients, colleagues and others who would be willing to share their memories and experiences of Kenny, her Institute, clinics, the Kenny method, the Rosalind Russell movie, and other aspects of polio in the 1940s. Contact naomi.rogers@yale.edu
Naomi Rogers, Director of Undergraduate Studies Women’s and Gender Studies Program
Yale University 100 Wall Street
– 316 WLH
New Haven, CT 06520-8319
Pool Exercising
by Peggy Bran
The Post Polio Awareness & Support Society of British Columbia has a water exercise program which was designed specifically for polio survivors. We enlisted the assistance of a polio specialist, Dr. Allan Bass of Victoria, British Columbia, and two kinesiologists [kinesiology is the study of the principles of mechanics and anatomy in relation to human movement]. The program has been running twice a week for the past 6 years. All members are monitored by the kinesiologists and periodically reviewed by the physiatrist.
The water should be 86 degrees F. (30 degrees Celcius) minimum but no warmer than 89 degrees F. (31.66667 degrees C.). The exercises are comprised of upper and lower body exercises, floating on your back (for balance), walking in the pool and when you get stronger, some swimming.
Upper body exercises
:
Stand in water that comes up to shoulder level, extend your arms straight out in front of you palms down, lower your arms down in front until you hit side level, turn your palms up and raise your arms back up to shoulder level. Repeat to the count of 10. 10 repetitions.*
Now hold your arms up to shoulder level but extend them out to your sides, lower your arms in the water, palms down till you reach your sides, turn your palms up and raise your arms back up to shoulder level, repeat 10 times.
Now hold your arms up to shoulder level as in previous exercise turn palms halfway up (so the side of your hand is lined up with your arm) pull your arms together in front of your chest, turn palms halfway down and push arms out (this is somewhat like the breast stroke in swimming) repeat to count of 10.
You should increase repetitions by 2 every week until you are able to do thirty repetitions.*
Lower body exercises:
You may want to hold on to the side of the pool for these.
Standing with your legs about 8 inches apart raise your leg out to the side and up to hip level, lower leg, repetitions: 10. turn around and do same with other leg.
Hang on to side of pool with your hands and move your legs as if you were riding a bike, repetitions 20 (10 each leg).*
Walk in water – start in water waist deep and walk out until you reach shoulder level, turn and walk back in, repetitions: 10.
As with first exercise all repetitions should be increased by 2 every week. REMEMBER that it is recommended that polio survivors have a day of rest between exercise routines. If you increase your repetitions and you feel sore or overly tired then drop the repetitions back until you feel stronger.
The recommendation is that you do these exercises twice a week. Once you feel stronger and if you like to swim you can add swimming one lap every two weeks for a month, then one lap each exercise routine building as you go.
Floating
– you can float around on your back for as long as you feel comfortable. This will assist in your balance and it is relaxing.
Please note that you are not likely to experience a great weight loss on this program as it is designed to increase our flexibility, balance and strength. It was not designed as a weight loss program although you may experience some weight loss.
I hope this helps.
Peggy Bran
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* A word of caution: The number of repetitions in this article may be too many for you to reach. Never do anything that causes pain or fatigue lasting more than 24 hours.
Used by permission of Peggy Bran as revised from a post to the Post-Polio-Med Email List. To find out more about the program, contact Peggy or PPASS.
WEB FINDS
To complement our featured article this issue, “When Caregivers & Spouses ‘Train Wreck’”, try the following Web sites:
The National Family Caregivers Association (NFCA) – www.nfcacares.org -is a grass roots organization created to educate, support, empower and speak up for the millions of Americans who care for chronically ill, aged or disabled loved ones.
Resources For Caregivers – www.cp-tel.net/pamnorth/care/ – has just what it says. All kinds of resources for caregivers.
Partners Against Pain – www.partnersagainstpain.com/html/main – say they are “Your Around-the-Clock Resource for Pain Management.” They offer info, tools, and services for patients and professionals.
Severe® News – www.severe.net/news/l – offers the “latest Social Security Disability news” and delivers! “Latest” means daily. Check it often for issues affecting you.
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A Texan named Bill sent us his personal Website. Editor of a small daily newspaper, writes about the people and small towns of West Texas. We’ve never listed personal websites here before, but this one is especially great. Go to users.apex2000.net/mcclell/polioaid/ for Bill’s short polio story and photo, then scroll to the bottom of the page. Click on “Elber’s Place” for stories guaranteed to laugh away your pain!
I’m Drinking From My Saucer
Author Unknown
I’ve never made a fortune
and it’s probably too late now,
But I don’t worry about that much
I’m happy anyhow.
And as I go along life’s way
I’m reaping better than I sow,
I’m drinking from my saucer
’cause my cup has overflowed.
Haven’t got a lot of riches
and sometimes the going’s tough,
But I’ve got loving ones around me
and that makes me rich enough.
I thank God for many blessings
and the mercies God’s bestowed,
I’m drinking from my saucer
’cause my cup has overflowed.
O, remember times when things went wrong,
My faith wore somewhat thin,
But all at once the dark clouds broke
and sun peeped through again.
So Lord, help me not to gripe about
the tough rows that I’ve hoed,
I’m drinking from my saucer
’cause my cup has overflowed.
If God gives me strength and courage
when the way grows steep and rough,
I’ll not ask for other blessings
I’m already blessed enough.
And may I never be too busy
to help others bear their loads,
Then I’ll keep drinking from my saucer
’cause my cup has overflowed.
ANOTHER BAD HAIR DAY IN MISSISSIPPI
By Sharman Collins
I just returned from my annual 12 day treatment program at Futures Unlimited, Inc. My goal for this session was increased endurance and relief from tight muscles and back pain. Ed and I discussed my desire to be able to play with my grandchildren for longer periods of time and my wish to be able to ski more than three runs per weekend at Schweitzer Mountain Resort. Pretty remarkable goals for someone who, a mere four and one-half years ago, spent 12 hours a day on a Bi-pap, wore a full-torso back brace all of my waking hours, and used my scooter to ride from one side of the room to the other. For those of you who are unfamiliar with the treatment offered by Ed Snapp, PT, 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, fibromyalgia spinal cord injuries, cerebral palsy, head trauma, developmental disorders and other neurological problems.
The standard treatment program lasts twelve 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 embryonic development. The movements and chronological sequencing are the result of nearly 40 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 January 5, and after a consultation with Ed, I was ready to start treatment. It was great to see Barbara, Linda, and Jamey again. Barbara did “pressures” on me and then I was submerged in the warm water of the tank. After the tank, I was massaged and put through patterning movements. And then, time to curl up in the inner tube in a fetal position and listen to recording of sounds in the womb. A session of “light therapy” follows the tube time. After a break for lunch, the treatment starts over again. Every time I have been to Futures, I start out the first week very stiff and sore. My tight muscles relax about day four. Every day of treatment at Futures is truly a “bad hair day.” I drove with extra caution every day when I left the clinic and hoped that I would not get stopped by a policeman for any kind of traffic violation. My reason was that I looked slimy and wet and probably suspect of all kinds of unusual behavior. Your body gets oiled, soaked in water, and poked and prodded all day. There is not much use to trying to comb one’s hair or clean up. I just needed to get to a hot shower with alot of soap and shampoo.
I was the only one undergoing treatment at the Clinic this session due to cancellations. It was actually a very quiet and relaxing twelve days. Ed has modified the treatment over the last four years I have been there. The changes he has made makes the therapy more effective. I felt a positive change in energy from about day three on. But, it will take time to see how this session translates into function. At my final consultation with Ed, I promised once again to be ever-vigilant about my posture. He gave me a new home program which includes different exercises. How blessed I feel to be able to continue this therapy on an ongoing basis. I will plan to return next winter for more treatment.
My plan was to stay at the Wingate Hotel the entire length of my treatment program. However, after a week at the Wingate the staff at Futures told me that a family near the clinic had opened up a bed and breakfast and also had a one-bedroom apartment for rent. I called Marjorie and Coleman Robertson at Mill Creek Place for information. I went to look at the apartment and moved there the next morning! It is located out in the country in a beautiful setting and was very comfortable. There is a full kitchen and laundry facilities are available. Marjorie and Coleman are warm and caring people and were willing to help me in whatever way they could. I enjoyed meeting them immensely and plan to stay there next year! The bed and breakfast is in the basement of their home and was quaint and very charming. Feel free to call them for information on your own accessibility needs. Their number is 662-328-2785. The cost of staying there is very reasonable and much less expensive than a hotel.
My trip to Mississippi was a very rewarding one. The therapy always makes me feel great and I loved meeting the Robertson’s and some of their friends. Even if every day in Mississippi is a “bad hair day,” it’s well worth the trip and the expense.
The Scoop on Special Needs Trusts
By Lisa Copen
Mary is a woman in her late forties who receives SSI and Medicaid due to her illness. She doesn’t work for pay, even though she is a talented writer. “I never know when I am going to go into a deep flare that could last for months,” she says. “If I began to work and then got sick I’d have to try to get back on the SSI system and prove myself even more disabled than I was before. It’s unlikely I would be able to do this… and then where would I be?” Mary is unable to even enter writing contests for fun because if she happened to win, the winnings could easily affect her financial assistance eligibility.
Most of us with an illness or disability would like to be able to contribute to our financial stability and yet the government programs such as Medicare, Medicaid, SSDI and SSI actively discourage people from earning money. One does not have to earn very much money to lose their monthly benefits entirely. And government aid comes to a halt when the person inherits or otherwise acquires assets in excess of $2,000. Only when the excess is spent will aid resume. So what’s the solution?
An option you may want to consider is what’s called a “special needs trust.” A special needs trust is a legal document that identifies a trustor, a trustee and a beneficiary. It defines the purpose of the trust, the distribution of the money and the details of the trust’s administration. Special needs trusts have been used for years by family members who felt a loved one was incapable of handling his own money, or for the future of disabled children, but recently attorneys have found a way to use this to break through some of the red tape for people with disabilities. And just recently special needs trusts have been approved and established by court order when the person receiving public benefits also receives an inheritance or gift, receives a personal injury or medical malpractice settlement or some other type of court settlement that produces either resources or income. (CA leg., Probate Code Sects 3600-3612.)
The advantages are:
-
Trust funds can separate earnings, grants, awards and gifts from your actual income, so that you can earn or receive money without disqualifying yourself from financial assistance.
-
Your earning potential may be broadened. You’re able to have some of the things that you want or need that are not covered by government or insurance programs.
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Anyone can contribute to the trust except you. A trust can be started with as little as $50.
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It allows you to receive gifts, from friends, family, fundraisers, as well as grants and fellowships.
Of course there are also drawbacks:
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You won’t be in control of the money in the trust.
-
The trust pays taxes as if it were a person or corporation.
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You must find a trustee that you trust! S/he will be in charge of giving you the money when you need it.
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Paperwork can be complex and you should obtain an attorney.
If you’re trying to get ahead and create financial stability for your future, but you feel that the government financial programs are holding you back, this may be an option worth considering. Check with an attorney in your state who specializes in disability assistance or elder law to learn more about what is involved and see if it may help you plan more effectively for your future.
________________________________
Condensed from the original article at www.restministries.org/art-specialnt/. © 1999. Used with permisson of Rest Ministries, a Christian organization that serves those who live with chronic illness or pain. www.restministries.org 888-751-REST (7378). For more about finances and chronic illness, see www.restministries.org/life-finances/
***The information given in this newsletter is not meant to be medical, financial or legal advice and is not given by a medical or legal professional. We recommend that you seek appropriate professional counsel regarding any concerns.***
My Neighborhood Pharmacist
by Dave Graham
In your encyclopedia the word pharmacology is described as: The science of the interaction between chemical substances and living tissues.
My own definition might include: An explanatory interaction designed to help a sickie understand the medicine his doctor just prescribed.
In one way it is a shame that many of our pharmacies have moved into our grocery stores instead of their traditional place, the office building where doctors practice. In another way they are certainly more convenient. But, their new home tends to do injustice to the pharmacists who have spent many years preparing for their occupation not unlike some other areas of doctoring. We just don’t expect highly trained medical professionals at the grocery store. We expect grocery store professionals.
“I just might write an article in our neighborhood paper about your service, Lea-ann. Then you would be swamped.” I said as I hung up the phone. At the time I was kidding with my pharmacist friend and health care professional. But then I thought about the many times I had relied on her expertise when my doctor seemed inaccessible.
Pharmacodynamics defines how the body absorbs the material, where it acts, what its effect is, and how it is metabolized and excreted. I suppose that is what she is doing when I ask about the new stuff that my ‘doc’ wants me to take and it’s side-effects.
It is my opinion that if we are not using all the valuable services of our personal pharmacists than we are not getting the complete care that our medical industry has to offer. You will notice that I said “personal pharmacist”. Again, the stigma of the grocery store employee doesn’t help the image of this one that cares and remembers and keeps records and deals with my doctor and the insurance company and then gives me an official year-end accounting for my taxman.
My sincere thanks to Lea-ann Kinney, Pharm. D. and her competent staff at Albertsons
The Resourceful Caregiver was created by National Family Caregivers Association just for caregivers. In its 148 fact-filled pages, you’ll find more than 500 listings for hotlines, helplines, newsletters, respite services, specialty directories, associations, catalog retailers, support groups, and more. The book is approximately $13 and can be ordered by calling National Family Caregivers Association at 1-800-896-3650.
Did You Know…?
65% of caregivers don’t receive consistent help from other family members.
69% of caregivers say frustration is their most frequently felt emotion.
77% of caregivers are employed outside of the home at least part time.
49% of all family caregivers say they have suffered from prolonged depression.
68% of caregivers are between the ages of 40 and 59.
80% of caregivers are women.
Nearly 10% of the US adult population are caregivers.
Statistics according to National Family Caregivers Association.
Polio Outreach of Spokane Library
Your resource for information on post-polio syndrome and disability issues.
Polio Outreach Of Spokane maintains a large library of information on post-polio syndrome and disability issues. The printed material is available by contacting our Librarian, Darlene Hansen at darlenekh@juno.com
Remember, you are not alone in your struggle. The problems that you or your loved one are experiencing now have been dealt with by others in the past. Their experiences are documented in some great material, all available in our library. Give Darlene a call and tell her what your difficulties are. She can send you the appropriate material.
New Stuff! We have the 10 selected tapes and abstracts, summaries, and handouts from many of the 89 speakers who presented at the Post-Polio and Independent Living Conference June 8-10, 2000 in Saint Louis, Missouri. Topics of the tapes include: Anesthesia; weight management; management of problems with arms, shoulders, spine; the polio virus and many more.
We also have the tapes from Post Polio Awareness and Support Society of British Columbia’s “Symposium 2000 – How Can I Help Myself?” A partial list includes: Introduction to PPS;Stress and Coping; Nutrition/Vitamins/Supplements for PPS; Pain Management; Fatigue Management; The Chiropractic Approach; Fitness/Exercise/Muscle Preservation; Benefits of Massage Therapy in PPS and more.
Our Offer:
If you want to receive PEN & ink by normal mail, send a request with your mailing address to:
P.E.N. S. 508 Shoreline Drive
Liberty Lake, WA 99019
We would appreciate a donation for printing and mailing costs, but if you are not able to do that it doesn’t matter. If you want to a subscription, let us know.
P.E.N. & ink,
On the Web and mailed world-wide to provide experience based advice and emotional support for Polio survivors, families and friends.
Mailing address. . . 508 Shoreline Dr., Liberty Lake, WA 99019 U.S.A.
Copyright © Polio Experience Network (P.E.N. & ink), 1999. .Original materials by P.E.N. writers may be reprinted in other newsletters as long as proper credit is given. Please send a complimentary copy of the publication to Polio Experience Network, 508 Shoreline Dr., Liberty Lake, WA 99019 U.S.A.
Back to “P.E.N. & ink” index page.
| (For information about up-coming meetings of Polio Outreach of Spokane, see the POS Webpage.)
Feature Article: When Caregivers & Spouses “Train Wreck” “A Care-given Look At Caregiving” by Connie Kennemer, a MS patient
After living with a diagnosis of MS for over 5 years I am still a student at UCI (University of Chronic Illness). Ideally I hoped to have this thing wired by now, having moved neatly through the “Stages Of Grief”—denial, anger, bargaining, and depression—to that final stage of acceptance. The reality is that I waffle between the first four more than I care to mention. My “waffling” often plays itself out as deep sadness, fear, anxiety, and anger. Anger has to have a target, a place to “land.” Mine too often ends up in a pile on the doorstep of my trusted caregiver— my spouse. While we don’t share a common illness, we do share a common goal: to live well as life-partners, in good times and not-so-good times. I never doubt his commitment. He is functioning well on the downside of the marriage vow: “For better, for worse. In sickness and in health….”. But we look through different lenses. He sees my battle from the outside—I fight from the other side of the skin. At times the contrast in views can present interesting challenges. Sometimes I want my caregiver to line up his life in terms of my pressing needs. Too often I resent the fact that he can go, do, work, travel, plan and execute his plan—…when this disease has redefined my life blueprint in ways that I am still trying to grapple with. I find myself envious of his freedom, his stamina. I silently accuse him of having a “room with a view” while I have a room with dirty windows. Train approaching. Lest you think that I’m just whining, consider with me the fact that self- evaluation can hold positive potential for both the caregiver and the “care-given.” Can you see the value in exploring and tracking your reactions both to the disease and to its relational backlash? Can I challenge both the caregiver and receiver to ask yourselves some questions: When are my reactions valid? When are they simply a painful reminder of the huge losses life has dealt me and those that I love? When is anger misplaced and misdirected? Where do “love-hate” moments occur (“I love this caregiver; I am jealous that his/her life is not on hold like mine is….” / “I love giving care… I hate that his/her needs drain me dry….”)? Are we talking about these hot topics—or ignoring the flashing lights and railroad crossing bars, driving through toward certain peril? Do we give permission to explore unruly emotions on both sides of the track? Train wrecks happen. They cause damage, but fatalities need not occur. If both those who give and receive care do careful and consistent “track inspection,” serious injury will be avoided. Connie Kennemer lives with MS and stays busy writing music, articles, giving piano lessons, and involvement with ministry, MS fundraising, and her family. Visit her website at www.songsthatpray.com. Used with permisson of Rest Ministries, a Christian organization that serves those who live with chronic illness or pain. www.restministries.org 888-751-REST (7378) |
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This week my caregiver and I “train wrecked.” We’re still doing damage estimates: Minor, thank goodness, but worth evaluating for the purpose of avoiding future crashes.