FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

NOTE FROM BARBARA

Well, looks like my Post-Polio problems are finally putting a damper on my long-distance driving – that is driving from Ormond Beach, FL to Huntington, LI, NY. I finally succumbed to the fact that reaching up to close the tailgate of the minivan after taking my scooter in and out was getting too difficult.

I purchased a Chrysler Town & Country (2001) with complete remote access to side doors AND back tailgate. Funny thing is that there are various buttons in the car which enables you to push the button to open the side doors and tail gate, and also open your garage door. The salesman thought he was impressing me with these various handy items until I told him that with my dexterity and raising the right arm difficulties, these “extras” were of little or no value to me. Naturally, as my right leg has no power, I needed to have a left-sided gas pedal installed. I also had to call Electric Mobility in New Jersey, for them to send me another trunk lift so that I could put their “Rascal” in and out.

It’s truly a shame that the automobile companies only reimburse you for adaptive equipment when you purchase a new car NOT a second-hand one…… Oh, well – The new minivan is great – not having to worry about whether my arm will reach up to pull down the tailgate or if I’ll have to wait for someone to assist me, is such a relief.

I’ve already driven my old minivan to my son’s place in Huntington, Long Island. I will now be able to fly up with the scooter and have a vehicle there that can handle it. Well, would you believe that on the flight home with Delta Airlines they managed to damage the scooter – somehow they knocked off the little black dial that allows you to go from 1 to 10 speed, then breaking the metal stem the black dial sits on ¾’s of the way down. They also did something to the steering column and the seat. I went to Customer Service and they took a report of everything, told me what company they deal with and I went home. The mobility company sent a driver over the following day and he said he would order the parts but would need to take the scooter with him and I would probably not get it back for a week or two. Told him “forget that – let me know when you have the part(s) and then come pick up the scooter”, he agreed to that.

This does give me pause though as to – is this going to happen every time I fly – maybe I’m better off purchasing another scooter and just leaving it up on Long Island and using airport wheelchair service whenever I fly. Will be looking into this in the next couple of weeks and will let you know what happens.

It’s funny, my children were worried about my doing the long-distance driving which, doesn’t bother me at all – what was (is) giving me a problem is the getting in and out of the car to do the pit-stops (gas, restrooms and food). When I tell people that I very often drive straight through (from Ormond Beach to Huntington and the reverse), they look at me like I’m nuts until I tell them that getting out of the car to register at a motel, then getting back into the car, going to the room, getting out again with my overnight bag (and sometimes having to take the scooter out), and then reversing everything in the morning is just using up too much energy. I’d rather stop at a rest area when I start to feel a little tired, park near the security car, make sure I’m locked in, close my eyes and rest for a half-hour or so, and then I’m ready to go again. - I also enjoy driving by myself as I can listen to whatever music or audio books I want to, and don’t have to worry about pleasing anyone but myself. (Aug 21, 2003)

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OUR SYMPATHIES

It is with great sadness that we offer our sincerest condolences to the family and many, many friends of Jenny Danielson – President of the Triad Post-Polio Support Group in Greensboro, NC.

To all of us who knew Jenny, it is a huge loss. We were blessed to be friends with her. During her illness, she filled us with such thoughts of courage that we were all certain G-d would grant her many more years to be with us. I guess HE needed her more than we did.

We also offer our sincerest condolences to the family and friends of Dr. Norman Minard. Norman was a member of the Long Island PPSG I was involved in before moving to Florida. He remained a member of that group and ours. He and his wife, Murielle, became snowbirds and spent the winters in West Palm Beach joining the PPSG down there. He will be sorely missed by all.

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The following is taken from an e-mail by our November speaker - Thomas Orthopedic

and Sports Physical Therapy.

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By correcting your posture, you can:

1) Slim your waist by an inch or more, so you look up to 10 pounds lighter.

2) Regain up to 2 inches of height.

3) Appear younger and more confident.

4) Increase grace and flexibility.

5) Minimize pain in the back, neck, and joints.

6) Reduce tension headaches.

7) Prevent numbness or tingling in the arms and hands.

8) Relieve digestive disorders and heart- burn.

9) Improve breathing by giving the lungs more room.

10) Promote better organ function by improving circulation.

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Reprinted from Colorado Post-Polio Connections, Summer, 2003,

Make a Place for Your Illness

and Put It in Its Place

by Pauline Salvucci

Pauline Salvucci is a Professional Life Coach. She is the author of numerous articles on self-care and personal development, including the popular “Self-Care Now!” booklets. Her web site is http://www.

selfcareconnection.com.

”A place for everything, and everything in its place.” That may be a fine idea if you’re eyeing the clutter on the living room floor, or a pile or two of old magazines and catalogues collecting dust in a corner. But what has it got to do with coping with illness? Plenty.

Illness is never a welcomed guest in anyone’s life. However, when it becomes a visitor in yours, in many cases, it’s there to stay. How you cope with it will determine, in great part, how well you love your life. Of the three primary factors which measure your ability to cope: your attitude, the social context of your life, and the quality of the resources available to you, your attitude becomes the foundation upon which the others build.

Making a place in your life for illness may sound like a strange thing to do, but it’s a crucial step in learning how to cope with your disease and putting it in its place. Here are some suggestions and tips to help you do this:

Acceptance and Denial are Normal Responses

When you begin to accept having an illness, you open yourself up to interacting with it. This will help you to make a place for it in your life. Feeling both acceptance and denial are normal responses to any major change, let alone a chronic illness. Some forms of illness can certainly limit you and contribute to your feeling different from other people. The thing that makes you different from others is what disease does to your body and how it can affect your emotions. Adjusting to this can be tough enough, don’t make it tougher by loosing you’re sense of self, your integrity, and, most of all, your sense of humor. Accepting yourself as a person living with an illness is a process. It doesn’t happen all at once. Don’t be harsh on yourself when you fluctuate between accepting your disease and denying it. Acceptance isn’t something you do once and for all. It’s a process. Little by little as you accept your illness, you will make room for it in your life.

Adapting Takes Time and Patience

Like an onion, you peel off one layer of change at a time. The changes you are faced with challenge your ability to adapt. You may have to let go of, or even say goodbye to some activities in your life, either for a time, or perhaps permanently. Grieve this loss. Create a ritual to say goodbye to what is no longer possible for you to do, but don’t deny those parts of your life which you enjoyed and which were important to you. They are a real part of your history and deserve your respect. Some of your life may be different than it was before, but don’t treat your past and the things you enjoyed as if they never existed. As you make the changes that your illness requires, you can become more flexible and creative in adapting to change. Keep a journal of the changes you’ve already made and how you made them. This can serve as a reminder and as a guide for making others as well. As you develop a greater degree of flexibility in adapting to change, the easier change becomes. Above all, don’t lose heart!

Befriend Illness as Part of Your Life

You already know how illness affects your body. Now get to know your relationship with it. If you consider your disease an enemy to be crushed, or an unwelcome guest which you refuse to tolerate, how will you allow your illness to be what it is, a part of your life which you can learn to befriend? Do you remember what Lincoln said about a house divided against itself unable to stand? If you’re divided against yourself by refusing to get to know this illness, or by waging war against it, how will you come to befriend it? Consider giving your illness a name and talk with it, or write it a letter. Speak from your heart and your passion. Include in your letter everything you think and feel about your uninvited guest. Don’t keep your thoughts running around in your mind creating havoc. Then, listen to what your illness says to you in return. If you find this difficult to do, don’t be discouraged. It is difficult, but there are rewards. An uneasy alliance is better than none at all.

Feel Like You’re Losing Yourself?

Do you feel as if your blue moods are turning into dark depression? Is inertia increasingly becoming more a part of your life? Do you do less for yourself on the days when you could be doing more? Do you isolate yourself from your loved ones and friends? If over a period of time, you are regularly experiencing these feelings and can’t shake them, don’t hesitate to find professional help. Ask your doctor to refer you to a therapist whose specialty is working with people with chronic illness. These therapists can help you to make your way through difficult times. Yes, it’s important to talk with your friends and family, but talking with a professional can be very freeing. They are available to help you sort out your experiences and the many feelings and thoughts you have about yourself and your illness. This isn’t the time to “tough it out”, or attempt to dismiss your feelings with a mind over matter mentality. Allow yourself to get whatever help you need. It can make a real difference in your life.

Too Much Illness Talk?

Do you feel that talking about illness is taking more of your time and energy than you would like it to? Is it wearing on your family and friends? That can happen, especially when you’re first learning about your illness. If it becomes a habit and you feel as if you’re losing perspective, here’s a way to regain your balance. Create “talk space”. Choose a comfortable place in a room in your home and make time to talk about your disease with your partner and family. Let them know what you’re experiencing and thinking. This is a time for honest sharing, for you and for your loved ones. Allow this “talk space” to be the place and time where you discuss your illness. Keep the rest of your home an “illness free talk zone”. This will allow you and your family to enjoy one another’s company and conversation without reverting to the topic of illness.

Seeing With New Eyes Doesn’t Mean Looking Through Rose Colored Glasses

When it comes to putting illness in its place, you might try seeing with new eyes. When it takes you more time to do just about everything, when simple tasks frustrate you because they’re not so simple to do anymore, when the familiar becomes foreign, when you can not do the many things you once loved doing, maybe seeing with new eyes can help. If you were an artist and can no longer paint, you can still go to museums or art galleries. If you can’t do that, you can enjoy art on the Internet and in books. If you worked with your hands and can no longer use tools to do a job or hobby, teach someone else to do what you know how to do so well. Share your knowledge and lend your expertise. If you loved nature and the outdoors, but can no longer hike, drive along some of the scenic roadways and enjoy the beauty and majesty of nature. Find a way to keep what you have been passionate about in your life. It takes time, work, patience, spirit and heart to make a place for illness in your life. Seeing with new eyes is a tribute to courage and the ability to put this illness in its place.

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Reprinted from Daytona Beach News Journal, August 14, 2003

FDA OKs wheelchair that

climbs stairs

WASHINGTON – Stairs are about to become less of an obstacle for some of the nation’s 2 million wheelchair users.

The Food and Drug Administration on Wednesday approved a wheelchair that literally can go up and down steps – as well as shift into four-wheel drive for grassy hills and elevate its occupant to standing height.

Called the IBOT Mobility System, the $29,000 wheelchair uses sensors and gyroscopes to navigate stairs while balancing on two wheels. It is so complex the FDA decided the wheelchair will require a doctor’s prescription and special training.

- Associated Press

FECPPSG Editor’s Note:- Wouldn’t it be nice if one day this was affordable and we no longer had to worry if something was accessible with ramps or curb cuts….. oh, well, who knows what the future will bring.

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The following article is reprinted with the permission of its author, Dr. Henry Holland, a member of the Central Virginia PPSG. This article is in their current newsletter (August – September 2003)

The Great Crippler,

Then and Now

By Dr. Henry Holland

The poliovirus is a unique virus. This virus only thrives in humans. It can enter your body by an oral pathway, cause a gastrointestinal illness and leave your body with no apparent residual damage. More people had polio this way and probably never knew it. The other extreme of this virus was its success as the great crippler of children. It was also a killer of children. This virus could invade a human body and kill in a few days. Death resulted from respiratory failure or from the overwhelming viral invasion of the entire central nervous system leading to coma and death. The observed and later written observations and descriptions of children dying from acute polio are emotionally draining to read. Most of us who experienced polio did so in childhood and many were left with residual damage that set us apart from our peers. The most commonly used word to describe this damage was “crippled.” Many larger cities had hospitals for crippled children “Crippled” is a painfully accurate word. The Merriam Webster Dictionary traces “cripple or crippled” to the fourteenth century. It means:

1 : to be deprived of the use of a limb and especially a leg

2 : to be deprived of capability for service or of strength, efficiency, or wholeness

The crippled state of polio survivors could cover a vast range of limitations. It could be something as minor as a visually undetectable weakness in one ankle to a near quadriplegia state requiring the use of a wheelchair or leg braces and crutches. Definition number one above is fairly easy to understand and comprehend. Treating the crippled state of an extremity was often easier to accomplish. Many were fortunate to be able to regain all or almost all of the use of a weakened extremity because of physical therapy and exercise. Of course now we know that undamaged motor neurons were capable of sprouting additional dendrites to innervate more damaged muscle groups and result in increased function of these previously damaged muscle groups. Even when the damage was extensive a well fitted brace would make it possible for a crippled leg to support weight and make it possible for a crippled polio child to get back on his/her feet and return to the world beyond the security of home. Returning to school, socializing with able-bodied friends, going to church, movies, soda fountains, toy stores, and playgrounds were again possible. Many of us are familiar with this pilgrimage.

I am more intrigued by the second part of the definition above. The concept of “wholeness” or a sense of “wholeness” is an important aspect of anyone’s development. If that feeling of wholeness is altered by the reality of being crippled, then the developing child and adolescent has to either withdraw from the risks of socialization or find ways to cope and defend himself/herself out in the world. I am convinced that almost all of us chose the second route; that is we engaged the world around us despite the interpersonal risks. The fruits of taking this risk surround us as we read about the accomplishments of polio survivors, know first hand about the courage and perseverance of polio survivors from our own interaction with them in support groups, and from what the able bodied have said about us.

Almost by necessity, most of us compensated for our crippled state, denied the reality of our crippled appearance, and made every effort to be normal in the normal world around us. If crippled in reality and feeling a lack of wholeness, as adolescents how did we cope with the challenges of relating to the opposite sex? Did we feel inadequate or simply uncomfortable in the social undertaking of dating? By excelling in other areas, many of us compensated and sublimated successfully in an attempt to level the social playing field. Since the vast majority of us married and worked productively, we apparently did succeed in our social and employment strivings.

Now as older adults we have had once again to face the second part of the definition above. Many of us are physically weaker, less efficient and less capable of providing service. Some probably feel less whole, and thus we are “crippled” again by Post-Polio Syndrome, the second Great Crippler. Most of us had never even imagined such an intensified decline in our overall functional state, as PPS has forced so many of us to accept. Most of us knew that we would get older, but thought that we would age more like our older family members or people we knew in the senior generation. For so many PPS has aged us prematurely. Those of us who may live alone now realize our vulnerability to losing our independence and having to find assistance in areas that most of our able bodied peers are not yet forced to face. Those of us who have able-bodied spouses are discovering that we depend on that spouse for some of the simple tasks of daily living. Our spouses are no longer young and do not always have the energy to carry the extra burden. In simple terms, all of this PPS stuff seems so unfair.

In our initial struggle with the Great Crippler, we were determined, generally optimistic, youthful in spirit, and found our way in the race of life. With this second round with the Great Crippler we are tired, not as optimistic, have to lower our expectations despite our determination, and still find our way at a slower pace in the race of life. We have all read the articles and listened to the lectures by the growing number of PPS experts, most of whom are younger than we are. We are reading more and more about the deaths of old polio survivors in our newsletters. Our numbers will continue to shrink just as the veterans of World War II; the survivors of the Holocaust and members of Tom Brokaw’s Greatest Generation will diminish. Hopefully there will be a day in this century when polio and photos of its crippled children will only be recorded in history books and historical medical texts.

We have not finished the race of life. But what is left for us to do? I think we should tell our stories and share our pilgrimage as a result of this disease. If you cannot tell your story, write about it or if artistically inclined, illustrate it. If we do not, future generations will never know. We probably would do well to establish more oral history collections within our respective support groups. I have often thought that we would do well to have a national or even an international magazine or journal that was personal and historical and not just medical and scientific. The Multiple Sclerosis Society has an excellent periodical. For so many people with the same disability, we are relatively fragmented. There are countless PPS newsletters and websites that often publish some of the same articles. To my knowledge the only national publication that serves us is Post-Polio Health (formerly Polio Network News or Gazette International Networking Institute or GINI). This publication is excellent, but is only published quarterly and is limited in size. I believe that there are many untouched and undiscovered sources of polio witnesses in written form, personal memories, and even in old newspapers. This October I am scheduled to make a Grand Rounds presentation at the Medical College of Virginia (now Virginia Commonwealth University Medical School), the medical school from which I graduated thirty-seven years ago. My topic will be “Polio, MCV, and Me.” I will attempt to describe my early experience with polio, the importance of MCV in my life, and a biopsychosocial overview of the disease of polio from my own analysis and the witness of others who will help me with this presentation.

The race is not over. Slow down and share your story. If necessary, get someone else to help you share your story. People will listen or will read. Stories from polio survivors are not fiction. They are real. The Diary of Anne Frank has done more to preserve the memory of the Holocaust than perhaps any other single publication. This was a simple but brilliant diary by a teenage girl who told her story as it happened. Time is growing short. Tell your story of human suffering, of your splendor in the grass, and your faith that looked past death. William Wordsworth wrote it much better than me.

INTIMATIONS OF IMMORTALITY FROM

RECOLLECTIONS OF EARLY CHILDHOOD

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Then sing, ye Birds, sing, sing a joyous song!

And let the young Lambs bound

As to the tabor's sound!

We in thought will join your throng,

Ye that pipe and ye that play,

Ye that through your hearts to-day

Feel the gladness of the May!

What though the radiance which was once so bright

Be now for ever taken from my sight,

Though nothing can bring back the hour

Of splendour in the grass, of glory in the flower;

We will grieve not, rather find

Strength in what remains behind;

In the primal sympathy

Which having been must ever be;

In the soothing thoughts that spring

Out of human suffering;

In the faith that looks through death,

In years that bring the philosophic mind.

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UPCOMING CONFERENCE

Are you a vent user? Do you know a vent user? Enter the drawing to receive
funds to attend the Ninth International Conference on noninvasive Ventilation, October 23-25, 2003 in Orlando, Florida.

For details: http://www.post-polio.org/ivun/

Post-Polio Health International including

International Ventilator Users Network

4207 Lindell Blvd #110 Saint Louis, MO 63108

info@post-polio.org www.post-olio.org

314-534-0475 314-534-5070 fax

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Reprinted from Daytona Beach News Journal, July 26, 2003 – Images

TESTING

one two three…forty, fifty, sixty

By Susan Wright

As some wag remarked, “Thirty-five is when you start getting your head together and your body starts falling apart.”

And Bette Davis is credited with saying that “old age ain’t for sissies.”

Sometime after 35 and before actual old age (however you define that), it’s time to stop taking your body for granted.

Recent advances in medicine, nutrition and life style have changed our expectations of our “golden years.” We’re not about to go gracefully into a life spent rocking on the porch waiting. A lot has changed in how we age and we expect to be much more active and involved as we enter our 50s, 60s and 70s – but scientists can’t yet change the basic fact that we are gradually wearing down and out over the years and some things can’t be changed. Our genes will determine many aspects of how we age and how long we live (Bob Hope just celebrated his hundredth birthday – and he may have his ancestors to thank rather than his success or healthy life style. His father also reached one hundred.)

But, we can do much to maximize the genetic make-up we’ve been dealt.

Eating well, exercise, fresh air and a positive attitude can make the most of the time we have. And medical science can help – if we cooperate by making sure we get the tests and check ups needed to treat all the conditions and diseases that may threaten our health and life spans.

So, here’s a decade by decade guide to what changes to expect, what measures you need to take to stave off whatever deterioration is inevitable or tests you need to take to detect real dangers before it’s too late.

40s None of us, even star athletes in constant training, can entirely elude the aging process – when muscle mass and strength decline, bones start to thin and lung capacity just isn’t the same. The percentage of body fat decreases – and moves. Skin starts to thin.

Sometimes between 40 and 50, bifocals become unavoidable for almost everyone.

Joints can already start to become painful and stiff due to loss of cartilage, and common forms of arthritis can set in as early as the 30s and continue to progress for the rest of the sufferers life.

TESTING: Starting at about age 45, everyone needs to get into a routine including: tetanus shots (every 10 years); chickenpox vaccine (those who didn’t already have the disease); annual Pap test and mammogram (for women); digital rectal exam for colon cancer; glucose (blood sugar), cholesterol and blood pressure checks. Men will need to get an EKG every three years to check their hearts.

50s Women who haven’t already entered the drastic change known as menopause – and 4,000 women do every year – can count on dealing with such symptoms as night sweats and mood swings. Those are temporary and each woman will have to decide for herself how to deal with them. Weight gain and increased risk of osteoporosis are more permanent repercussions, along with increased risk for heart disease. Menopause is when women’s risk for heart disease catches up with men’s and- both will continue to need regular screening.

Everyone’s metabolism changes so that they need to eat less to keep the same weight. Eyes are more susceptible to glare and night vision declines. Kidneys shrink and the bladder can’t hold as much. Men discover the perils of an assortment of prostrate problems and cancer looms as a real danger for both sexes – with 80 per cent of all cancers occurring after the fiftieth birthday. Diabetes is another real concern.

TESTING: Ah – until now, the tests needed seemed to be all about putting up with a needle to draw blood. Now, things get a little more invasive. As in tubes up places you don’t want to think about. Starting at 50, you’ll need a flexible sigmoidoscopy with barium enema to screen for colon cancer every five years, and every five to 10 years, there’s the more extensive version, a colonoscopy. Men need to go for annual PSA blood tests to check for prostate cancer. Women should start having a bone density screening test (no tubes involved) every three years while men go for annual PSA blood tests to check for prostate cancer. Women join the men now in needing that annual EKG for heart health screening.

60s So now what? Blood vessels naturally start thickening – and if you’ve overdone it with a high cholesterol diet in the past the combination can add up to trouble. Men, too, need to start worrying about osteoporosis and women can face serious debilitation.

Vision problems can now escalate from merely having trouble reading to real risk of blindness from macular degeneration, the most common form, and hearing problems start to surface, with sensitivity to high and low-pitched sounds accelerating.

Glucose metabolism starts to decline, leading to degeneration of vital organs.

TESTING: The whole gamut of health tests and screenings begun over the past two decades is even more essential at this point. And, it’s time to start getting regular flu and pneumonia vaccinations, as those illnesses are more dangerous as the body ages.

70s If you thought you were having trouble with your memory or reaction time before, you’ll really notice it now as the brain cells that started gradually disappearing in your 20s really start to go now. Blood circulation will get sluggish, making you more vulnerable to cold. Men lose their hearing twice as fast as women, while women are more frail. Both sexes will have more trouble just breathing as maximum breathing capacity will decline by 40 percent by the time they enter their 80s. It’s more important than ever to keep up with the daily walk or swim as the effort gets harder. Heart rate during exercise is down by about 25 percent.

And your appetite decreases – possibly leading to nutritional deficiencies, leading to further decline and illness. Not to mention the fact the infection-fighting cells have decreased, making those flu and pneumonia vaccinations even more important.

80s However, don’t despair. Those who manage to make it to 85 without major health problems, can still have years of life left in them.

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Problem Areas:-

EYES:- Keep an eye on prospective vision problems starting at age 45. Potential problems to look out for: glaucoma, cataracts and macular degeneration.

All are serious problems requiring early detection to treat. By 65, start scheduling an annual visit with the eye doctor to prevent blindness.

Glaucoma is caused by pressure in the eye. Risk factors include: diabetes, family history, or African-American racial background.

Cataracts are clouding of the eye lens. They may be treated surgically.

FLORIDA EAST COAST POST-POLIO SUPPORT GROUP - Vol. 11 #2

12 Eclipse Trail / Ormond Beach, FL 32174 / 386 676-2435

E-Mail:- bgold@iag.net -- Web Site:- iag.net/~bgold/polio.htm

SEPTEMBER / OCTOBER 2003

WISHING ALL OUR FRIENDS

A RESTFUL LABOR DAY,

TO ALL OUR JEWISH MEMBERS AND FRIENDS

MEETING NOTICE

INTIMATIONS OF IMMORTALITY FROM

RECOLLECTIONS OF EARLY CHILDHOOD

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