FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

POLIO - My Partner.....

Manifesto of a Polio Survivor.

Businessman, politco, author, world traveler and gadget guru for assistive technology -- Mark Ravenscraft will be our featured speaker for the 'wearin' of the green on St. Patrick Sunday, March 17. Elected the youngest County Commissioner in the USA at age 21 in 1970, Mark served 17 years in local government in his native Ohio. He wrote "Klaus the Courthouse Maus" as a children's primer for understanding county government, and he has taught labor/management relations at the University and Community College level. As founder of The Ravenscraft Group, an international consulting firm, Ravenscraft has traveled to many parts of the world. Recently he returned from South Africa and Vietnam and will share with us his

observations about disability issues in those very different lands. He was Florida's first Executive Director of the Florida Alliance for Assistive Services and Technology, specializing in the latest advances in devices to make life more independent for people with disabilities. Never far from his 'kit bag of gadgets," Mark will razzle and dazzle us with some of the latest devices to make life easier.

Mark is the father of two sons, ages 29 and 25 and resides in Tallahassee. He contracted polio at age two and has considered polio his "partner" for over fifty years. We look forward to this witty and dynamic speaker as he shares an unusual perspective on living and aging with a polio disability.

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CHANGE OF MEETING PLACE

YES, our March meeting will be at the Red Lobster Restaurant on I-92.

At our New Year’s Luncheon meeting (where we had 28 members) it was decided that a luncheon meeting was preferred and since the Red Lobster has always given us such good service, we made arrangements to meet there again. Our meeting will be from 1:00 – 4:00 pm. The cost will be $10. per person – reservation form can be found at the end of the newsletter. Please send in your reservation no later than March 12th so we can give the Red Lobster a count of how many we will be.

For those that were at the New Year’s Luncheon, you may have even met and spoken with our speaker, Mark. It should be a most stimulating and interesting meeting.

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A BIG “THANK YOU”

My family and I would like to THANK all our friends who have asked us how my son, David, was doing. He is recuperating nicely and, hopefully, by the time you receive this newsletter, will be e putting some weight on his right leg. It was a hard lesson to learn, but he is now, FINALLY, and THANKFULLY, done with riding dirt bikes and motorcycles.

The one “good” point that came out from this accident is that David has been frustrated by not being able to do simple things….. like just lifting up his injured leg. He’s had to pick it up by the brace strap (just like I do) and then lift it and place it where he wants it to be. Other little things that the able-bodied take for granted were also causing him frustration; i.e., taking a bath/shower, driving.

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FURTHER ADVENTURES OF BARBARA…

Well, after several days rest upon returning from Long Island, I left for Las Vegas with my brother and sister-in-law. We drove to Jacksonville (because air fare was half the price of Daytona Beach’s) – the security check for me was basically the same as always --- a female security guard “frisks” me down while I sit in the wheelchair. It was strange seeing so many National Guard soldiers with M-16’s standing and walking around. They did do random searches and my brother was one of those searched – even to removing his shoes. You now need to show picture ID at check-in points up to and including boarding the airplane.

When we reached the hotel in Las Vegas (and we always stay at the Mirage), the scooter I had rented was waiting for me. They had me registered into a “fully handicapped room” – this turned out to be a truly FULLY HANDICAPPED ROOM --- they had a Hoyer lift (or similar article) over the bed and also a lift in the walk-in shower. The light switches were at wheelchair level, as were outlets. The room was also equipped with a refrigerator and, of course, had a king-size bed.

As I really don’t require all that, I was transferred into a “regular” handicapped room.

ALL their handicapped rooms are equipped with grab-bars around the commode and grab-bars around the entire tub area. The bathtub has a pull-down seat attached to it. They have both sound and light fire alarms.

My only suggestions as to their rooms would be to place another telephone in the bathroom area and to have the telephone in the “bedroom” be placed on the nightstand closer to the bathroom if the room has a king-size bed, as a single handicapped individual is more likely to stay on the side of the bed closer to the bathroom and its quite a stretch to reach over to the other nightstand. I’ll be sending them a note with these two suggestions as well as complimenting them on the accessibility they do have.

In the casino itself, all the slot machines have chairs or stools so that you don’t have to stand to play. Also, there are two low blackjack tables – one non-smoking and one smoking. There is always a spot left for a wheelchair (or scooter) user to sit at the table. I noticed that they also had a low table in the baccarat area – maybe next time I’ll try learning that game.

Coming home, they wheeled me through the security door and, of course, it rang out loud and clear. I had told them before they wheeled me through that I was wearing a full leg brace and had had a knee replacement. They then did the normal frisking and passed me through. My brother, once again, was a random search.

All, in all, it wasn’t too bad. I did notice that being in the wheelchair we managed to avoid waiting on the long lines at the security points. They pushed me up front and away we went……

It was also interesting to see how many scooters were being used with many of them having been rented from the same company that I rented mine from. When I first started going to Vegas I was about the only scooter there. Now they are quite common. Glad to see we’re taking advantage and getting out.

The “Airport Security” article a little further down in this newsletter is a good one to take with you if you are worried about going through the various travails of traveling.

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For those of us with different sized shoe sizes, the following may be of some help.

Our thanks to Marion Schoeller for e-mailing us the information.

MIS-MATCHED SHOES

The One Shoe Crew is back up and running. As you may have heard, this non-profit organization which provides shoes for people who wear only one shoe or wear two different size shoes was vandalized over a three day period back in February, 2000. They have finally caught up on all the correspondence and have filled most of the old orders and are still working on some orders recently discovered. They still have stacks of letters to respond to.

For those of you aren't familiar with The One Shoe Crew, here is some general information. This organization is open to any adult or teen whose feet have stopped growing. They match people with their shoe opposites by computer. By having a "shoe partner," the cost of the shoes is shared. The lifetime registration is $3.00, USA currency. The partnership fee is $10.00, and is NOT due until a partner has been found. They request a $5.00 donation for each shoe for their operating costs, but this can be waived for financial difficulty. Postage, $2.50 per shoe must be prepaid. ALL services are free for US veterans.

The One Shoe Crew is not a shoe store. All of their shoes are donated by individuals, retailers or shoe manufacturers. They do accept donations of shoes.

For information and a brochure contact the director: Georgia M. Hehr at 916-364-SHOE, address: 86 Clavela Avenue, Sacramento, CA 95828-4647.

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The below was sent to me by one of our non-PPS members, Sherrill Bauer. I think it is an excellent philosophy and one worth following.

HOW TO LIVE A HAPPY LIFE!!

1. Throw out nonessential numbers. This includes age, weight and height.
Let the doctor worry about them. That is why you pay him/her.

2. Keep only cheerful friends. The grouches pull you down.

3. Keep learning. Learn more about the computer, crafts, gardening, whatever. Never let the brain idle. "An idle mind is the devil's workshop," The devil's name is Alzheimer's.

4. Enjoy the simple things. When the children are young, that is all that you can afford. When they are in college, that is all that you can afford. When you are on retirement, that is all that you can afford!

5. Laugh often, long and loud. Laugh until you gasp for breath. Laugh
so much that you can be tracked in the store by your distinctive laughter.

6. Tears happen. Endure, grieve, and move on. The only person who is
with us our entire life, is ourselves. Be alive while you are alive, don't put out a mailbox on the highway of death and just wait in residence for your mail.

7. Surround yourself with what you love, whether it is family, pets,
keepsakes, music, plants, hobbies, whatever. Your home is your refuge.

8. Cherish your health. If it is good, preserve it. If it is unstable, improve it. If it is beyond what you can improve, get help.

9. Don't take guilt trips. Go to the mall, the next county, a foreign country, but not to 'guilt country'.

10. Tell the people you love, that you love them, at every opportunity.

Life is not measured by the number of breaths we take, but by the moments that take our breath away.

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Reprinted from Post Polio Voice, Charlotte County, FL, Volume 4, Issue 4, January 2002

AIRPORT SECURITY

AND THE DISABLED

(for those of us who travel by air)

Steps Taken to Ensure New Security Requirements Preserve and Respect the Civil Rights of People with Disabilities.

The Air Carrier Access Act (ACAA) and the Department of Transportation’s implementing rules prohibit discriminatory treatment of persons with disabilities in air transportation.

Since the terrorist hijackings and tragic events of September 11, the Federal Aviation Administration (FAA) has issued directives to strengthen security measures at airline checkpoints and passenger screening locations. In securing our national air transportation system, where much of FAA’s efforts have been directed to date, steps were also taken to ensure that the new security procedures preserve and respect the civil rights of passengers with disabilities.

This Fact Sheet provides information about the accessibility requirements in air travel in light of strengthened security measures by providing a few examples of the types of accommodations and services that must be provided to passengers with disabilities.

CHECK-IN

Air carriers must provide, meet and assist service (e.g., assistance to gate or aircraft) at drop-off points. The lack of curbside check-in, for certain airlines at some airports, has not changed the requirement for meet and assist service at drop-off points.

SCREENER CHECKPOINTS

Individuals assisting passengers with disabilities are allowed beyond the screener checkpoints. These individuals may be required to present themselves at the airlines’ check-in desk and receive a “pass” allowing them to go through the screener checkpoint without a ticket.

Ticketed passengers with their own oxygen for use on the ground are allowed beyond the screener checkpoints with their oxygen canisters once the canisters have been thoroughly inspected. If there is a request for oxygen at the gate for a qualified passenger with a disability, commercial oxygen providers are allowed beyond the screener checkpoints with oxygen canisters once the canisters have been thoroughly inspected. Commercial oxygen providers may be required to present themselves at the airlines’ check-in desk and receive a “pass” allowing them to go through the screener checkpoint without a ticket.

The limit of one carry-on bag and one personal bag (e.g., purse or briefcase) for each traveler does not apply to medical supplies and/or assistive devices. Passengers with disabilities generally may carry medical equipment, medications, and assistive devices on board the aircraft.

All persons allowed beyond the screener checkpoints may be searched. This will usually be done through the use of a hand-held metal detector, whenever possible. Passengers may also be patted down during security screenings, and this is even more likely if the passenger uses a wheelchair and is unable to stand up. Private screenings remain an option for persons in wheelchairs.

Service animals, once inspected to ensure prohibited items are not concealed, are permitted on board an aircraft. Any backpack or sidepack that is carried on the animal will be manually inspected or put through the X-ray machines. The service animals halter may also be removed for inspection.

Assistive devices such as walking canes, once inspected to ensure prohibited items are not concealed, are permitted on board an aircraft. Assistive devices such as augmentative communication devices and Braille ‘N Speaks will go through the same sort of security screening process as used for personal computers.

Syringes are permitted on board an aircraft once it is determined that the person has a documented medical need for the syringe.

Personal wheelchairs and battery-powered scooters may still be used to reach departure gates after they are inspected to ensure that they do to present a security risk. Any backpack or sidepack that is carried on the wheelchair will be manually inspected or put through the X-ray machine.

Personal wheelchairs will still be allowed to be stowed on board an aircraft.

Air carriers must ensure that qualified individuals with a disability, including those with vision or hearing impairments, have timely access to information, such as new security measures, the carriers provide to other passengers. For example, on flights to Reagan Washington National Airport, persons are verbally warned to use the restrooms more than a half an hour before arrival since after that point in time passengers are required to remain in their seats.

Alternative formats are necessary to ensure that all passengers, especially deaf persons, understand new security measures such as the one at Reagan Washington National.

We hope this information is helpful to you.

Members of the public, who feel they have been the subject of discriminatory actions or treatment by air carriers, may file a complaint by sending an email, a letter, or a completed complaint form to the Aviation Consumer Protection Division (ACPD).

ACPD’s e-mail address is airconsumer@ ost.dot.gov and its mailing address is: Aviation Consumer Protection Division, U.S. Department of Transportation, Room 4107, C-75, Washington, DC 20590. Complaint forms that consumers may download and/or print are available at http://www.dot.gov/airconsumer/ problems.htm. Issued on 10/29/01 by the Office of the Assistant General Counsel for Aviation Enforcement and Proceedings and its Aviation Consumer Protection Division.

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Reprinted from OPTIONS, The Polio Society Newsletter, Fall/Winter 2001

Can Stem Cells Help Polio Survivors?

By Edward B. Grebenstein, Jr.

In response to recent scientific developments regarding stem cells research, the Polio Society’s board of directors asked Lauro Halstead, M.D. to make an informed presentation on the topic at its July 16, 2001 meeting. This article is based on his presentation and several excellent reviews of the field published by the National Institutes of Health,

What are stem cells?

Stem cells exist in every human being. Very simplistically, they can be compared to college undergraduates who have not yet declared a major. Just as most college students eventually major in business, law, or some other subject leading to a career, stem cells evolve in response to the right stimuli to become blood cells, bone cells, muscle cells or even nerve cells. This process is called differentiation and is usually triggered by a chemical stimulus. In adults, stem cells exist in bone marrow and probably play some role in the healing process. However, scientists do not yet know how stem cells repair damaged organs, or why some human organs can regenerate themselves and others cannot.

The current scientific consensus is that embryonic stem cells are more flexible, and therefore more useful, than stem cells from adults. Embryonic stem cells are pluripotent, which means that they can become any cell produced by the body. By contrast, adult stem cells are found in specialized organ tissues, and therefore may not be able to assume the functions of cells in other organs. Indeed, biologists at the University of Wisconsin recently reported that they were able to transform human embryonic stem cells into red blood cells, white blood cells, and platelets – the three components of human blood.

These developments have triggered a vigorous debate about the morality of embryonic stem cell research. Nevertheless, many private start-up companies are attempting to capitalize on this research. These companies are entering into partnerships with academic and other researchers and are looking for patient populations in which to conduct research. In general, these companies believe that stem cell research may provide a better investment with quicker returns than gene research. Although it is still very early, there have been small preliminary studies in humans with such diverse diseases as stroke, spinal cord injury, multiple sclerosis, Parkinson’s disease, and Alzheimer’s disease.

Does this mean stem cells might one day be able to help polio survivors? A number of leading researchers believe this could happen, although stem cell treatments are unlikely to completely restore all lost function. In an attack of acute polio, motor neurons due in the anterior horn of the spinal cord, causing the “orphaning” of muscle cells which, in turn, can lead to muscle weakness and partial paralysis. According to the latest polio research, post-polio syndrome (PPS) results from the overuse of the remaining healthy motor neurons. Some scientists believe that stem cells might be able to replace lost anterior horn cells or help remaining motor neurons work more effectively. Either way, the stem cell might ameliorate some PPS symptoms and, perhaps, even arrest their progression. Stem cells could therefore help polio survivors feel better even if they did not completely “cure” the late effects of polio.

The Board discussed the idea that stem cells research for polio should be placed on a “fast track.” Specifically, the Board contends that while Federal funding is crucial to the ultimate success of stem cells research, the polio community should not wait for such funding alone to pursue effective treatments. The amytrophic lateral sclerosis (ALS) community has been aggressive in pursuing private funding and private research; the Board believes that the polio community should consider doing likewise.

The Polio Society will continue to discuss its role in promoting this research, and OPTIONS will continue to report on important developments. We invite you, our membership, to let us know your opinions about this exciting new field with its potential to help polio survivors. Call us, write us a letter, or use our new e-mail address poliosociety @yahoo.com. Our telephone number is 301-897-8180 and the address is The Polio Society, 42100 Wisconsin Avenue, NW, PMB#106-273, Washington, DC 20016.

Barbara’s Editorial Note:- Although many of our readers (FL E Coast PPSG newsletter) are not members of The Polio Society, I’m sure that they would more than welcome comments from any of you that want to let them know your opinion with respect to stem cells research.

Mr. Grebenstein is the President of The Polio Society.

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The following is also reprinted from the Post Polio Voice, January 2002 issue.

ATTITUDE

The longer I live, the more I realize

The impact of attitude on life.

Attitude to me is more important

Than the past, than education, train

Money, than circumstances, than

Failures, than successes, than what

Other people think or say and do. It

Is more important than appearance,

Giftedness or skill.

It will make or break a company,

Church … a home.

The remarkable thing is you have a

Choice every day regarding the attitude

you will embrace for that day.

We cannot change our past…

We cannot change the fact that people

Will act in a certain way.

We cannot change the inevitable.

The only thing we can do is play on

The one string we have,

And that is our attitude.

I am convinced that life is ten per-

Cent what happens to me and ninety

Percent how I react to it.

And so it is with you.

You are in charge of your attitude.

~Charles R. Swindell~

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Reprinted from The Sunshine Special, Post Polio Support Group of Palm Beach County,

December/January 2002.

CRUISE LINES DEVELOP FACILITIES TO

WELCOME THOSE IN WHEELCHAIRS

By Gloria Hayes Kremer

“I won’t let the things I can’t do stop me from doing the things I can do,” Brewster Rhodes of Lower Gwynedd says “I just take my dependable wheelchair along with me… and off I go.”

Five years ago, Rhodes’ health problems affected his ability to walk. His doctor advised him to get a wheelchair or a three-wheeled electric scooter (he got both), and “he’s been getting almost everywhere ever since,” his wife, Peggy, says. “We took (cruises) through the Caribbean, the Panama Canal, and recently traveled to Alaska even taking the land tour the week before the cruise.”

“So many folks don’t realize that they can do more than they think they can do,” says Rhodes, a retired telephone company executive.

Today, many people with disabilities are enjoying the pleasures of an unpack-once cruise vacation, discovering exotic destinations, continuous activities, and fine dining in an all-inclusive trip. And they’re doing so in accessible, comfortable surroundings.

“There has been a tremendous increase in wheelchair users taking cruises,” says Howard McCoy, president of Accessible Journeys, a Ridley Park company that arranges vacations and travel for people with restricted mobility and other disabilities. “Today, most major cruise lines welcome guests with special needs and offer good facilities like accessible staterooms, roll-in-showers, lower window height for visibility, (wider) bathroom door widths, and enough space for easy mobility.”

Enjoying a successful and accessible cruise vacation depends on many factors, the most important of which may be getting enough information in advance.

It’s important to learn how shore excursions are managed. Do the ship’s tenders, which carry passengers to shore, have a manual lift?

Travelers should speak with a cruise professional or a specialized tour operator, one who is familiar with accessible cruising, about the layout of the ship, the kinds of shipmates they can expect to have, the kinds of activities the ship offers, and the ports of call.

The following is a listing of the major cruise lines, with their ships’ accessibility for wheelchair travelers.

CELEBRITY CRUISES

All public spaces can accommodate wheelchairs, thanks to ramps, extra-wide elevators and non-obstructive thresholds. There are specific wheelchair designated areas within all theaters and restaurants. Wheelchair-accessible restrooms are next to the formal restaurants and casual areas. There are also special seating sections in public areas and lounges.

On several ships, there are 41 square-foot bathrooms, each with a fold-down stool in the shower, handrails, a detachable shower head, an adjustable mirror about the sink, a toilet seat 17 inches off the floor, and light switches at wheelchair level. Celebrity, like most cruise lines, recommends that any passenger using a wheelchair travel with a companion who can provide any necessary assistance. For information, contact Celebrity Cruises’ Special Services Department, 1-800-242-6374.

PRINCESS CRUISES

Every princess vessel has a full-time access compliance manager, who monitors and expands onboard accessibility for passengers with disabilities.

Ramps around the ship allow wheelchairs and scooters to maneuver easily within the vessel and to cross thresholds between the inside and the outside. There are accessible areas in each ship’s major public rooms, including the casino, beauty salon, boutiques, dining rooms, self-service Laundromats, public restrooms, lounges, and health spa.

The grand-class ships feature a high number of wheelchair-accessible cabins. For example, the Golden Princess has 28 (18 outside and 10 inside); they range in size from 240 to 385 square feet. The Ocean Princess, Sea Princess, Dawn Princess, Sun Princess and Regal Princess have 10 cabins, the Sky Princess has six, the Royal Princess has four, and the Pacific Princess has two. For information: 1-800-421-1700.

NORWEGIAN CRUISE LINE

Doorways in accessible staterooms range from 35 to 39 inches in width. On the Norwegian Sun, there are six wheelchair accessible staterooms, each with a handheld shower, a shower stool, and grab bars throughout the bathroom. All regular guest staterooms on the Norwegian Sky have an entrance-door passageway width of 25 inches which can accommodate wheelchairs and electric chairs 22 inches wide. The Norwegian Majesty has four staterooms with a bed height of 20 inches. The Norway has 11 staterooms that are wheelchair-accessible. Guests requiring them must bring their own collapsible wheelchairs. For information: 1-800-327-7030.

HOLLAND AMERICA LINE

In addition to accessible cabins and public-area facilities similar to other lines, Holland America has developed the Shore Tender Accessibility Project. This provides an innovative safe comfortable transfer between ship, tender and pier for guests using wheelchairs. The guests’ wheelchair is locked into place on a lift that that runs on an inclined track from the top of the gangway to the tender. A ramp on the tender allows the chair to be wheeled directly aboard and locked into place atop a specially designed scissor-lift. Once dockside, the tender has an adjustable hydraulic leveling system so that the wheelchair can be rolled off the tender and onto the dock.

For information: 1-800-426-0327

ROYAL CARIBBEAN

In addition to the accessible amenities on this ever-growing fleet of ships, the new Adventure of the Seas, (scheduled to join the fleet next month) has several new facilities for wheelchair users. All staterooms for these passengers have between 256 and 348 square feet of space and are near elevators. The deluxe staterooms feature 74-square foot verandas. Float floor permit easy bathroom access, and there is a five foot turning radius in sleeping areas, bathrooms and sitting areas.

Doors to outdoor public areas open automatically. Terraced public rooms have gradual inclines instead of steps. Royal Celebrity Tours, created by Royal Caribbean, just introduced large and accessible domed rail cars for touring the land segment of an Alaskan cruise. For information: 1-800-327-6700.

CRYSTAL CRUISES

Both the Crystal Harmony and the Crystal Symphony have specially equipped penthouses and staterooms, and ramp access to most decks and public areas. The Crystal Harmony has two specially equipped penthouses and two specially equipped staterooms; the Crystal Symphony has two specially equipped penthouses and five specially equipped staterooms. On each ship, eight guest elevators can accommodate wheelchairs and provide access to all public decks. Each elevator is also equipped with convenient, low control buttons. For special port transportation or information on ports that offer shore excursions with necessary facilities, passengers should contact Crystal Cruises’ On-board Guest Services Department before sailing.

For information: 1-800-446-6620

SILVERSEA CRUISES

There are two accessible suites aboard each of the line’s four ships – the Silver Cloud, Silver Wind, Silver Shadow and Silver Whisper. Each of these suites has wider doorways, ramp leading into the bathroom, and an accessible shower with removable and adjustable shower head; there are also alarm cords in the bathrooms aboard the Silver Shadow and Silver Whisper. For information: 1-800-722-9955

RADISSON SEVEN SEAS CRUISES

On the Seven Seas Navigator, there are four wheelchair-accessible suites, each 301 square feet with a 55-square foot balcony. The Radisson Diamond has two staterooms with 243 square feet of space. The Seven Seas Mariner has four suites with 252 square feet of space. The cruise line requests that passengers bring their own wheelchairs. For information: 1-800-333-333 (last digit missing from article)

ROYAL OLYMPIC CRUISES

Two of the ships in this fleet have wheelchair-accessible staterooms. The Olympia Voyager and Olympia Explorer each have four deluxe ocean-view staterooms and baths with adjustable shower heads and grab bars. The rooms are 140 square feet. For information: 1-800-368-3888

CARNIVAL CRUISE LINE

The world’s largest cruise line has 25 accessible staterooms on its Triumph, Victory and Destiny ships. A “medical desk” is designed to handle specific questions and provide assistance in booking wheelchair travelers. Wheelchair passengers are the first to debark, and receive assistance if necessary. The line notes that the bathrooms are designed with a shower seat and water controls at a lower level; there are also lower telephones and a remote for television. For information: 1-800-327-9501

Reprinted from “The Philadelphia Inquirer” October 2001. Submitted by Leslie Kavanaugh

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The following was also e-mailed to me by Marion Schoeller. It’s from the Sun-Sentinel and was reprinted in the post-polio newsletter, "Second Time Around," From the Boca Raton, Florida area-January, 2002.

KISSING AS AN EXERCISE

The Academy of General Dentistry has found that kissing stimulates the flow of saliva in your mouth and the minerals help repair early lesions in tooth enamel and help kiss cavities away. Studies have found that kissing reduces stress. Kissing stimulates hormones that relax you. You start breathing deeper and taking in all that extra oxygen which helps release tension. The average kiss uses at least 12 facial muscles, which is good for you and makes you look young. An extremely passionate kiss uses all 34 facial muscles. Kissing can help in weight reduction. A passionate kiss burns 11.2 calories more than the 6.4 calories you burn running/walking on a treadmill.

Barbara’s Editorial Note:- KEEP ON KISSING!!!!

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WHERE TO MEET?!?!?!

At the New Year’s Luncheon it was decided to have our March meeting at the Red Lobster. Please let Barbara (386-676-2435) know if we should start meeting at various restaurants (or stay at the Red Lobster) or go back to meeting at the Atlantic Medical center.

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Reprinted from HOSPICECARE of Memorial Hospital

25 PRACTICAL TIPS

You Can Use to Help Those

Facing Serious Illness

When someone you know faces a serious illness, most of us find it hard to know what to do. Feeling helpless and uncertain, we say, “If you need anything, just call,” but we know that’s really not enough.

Here is a collection of truly useful ideas you can use to show your concern and support for people who are close to you.

1. Don’t avoid me. Be the friend… the loved one… you’ve always been.

2. Touch me. A simple squeeze of the hand tells me you still care.

3. Call and tell me you’re bringing over my favorite dish. Bring food in disposable containers so I won’t worry about returning them.

4. Watch my children while I take a little time to be alone with my loved one. My children also may need a little vacation from my illness.

5. Cry with me when I cry, and laugh with me when I laugh. Don’t be afraid to share these emotions with me. Pain isolates me. Help me reconnect with others.

6. Take me out for a pleasure trip, but know my limitations.

7. Call for my shopping list and make a special delivery to my home.

8. Before you visit, call to let me know, but don’t be afraid to visit. I need you. I can get lonely.

9. Help me celebrate holidays (and life) by decorating my hospital room or home, or by bringing me flowers or other natural treasures.

10. Help my family. Invite them out. Take them places. I am sick, but they may be suffering also. Offer to come and stay with me to give my loved ones a break.

11. Be creative. Bring me a book of thoughts, taped music, a poster for my wall, cookies to share with my family and friends.

12. Let’s talk about it. Maybe I need to talk about my illness. Find out by asking me, “Do you feel like talking about it?”

13. Don’t always feel we have to talk. Sitting quietly together is fine.

14. Can you take me and/or my children somewhere? I may need transportation to a treatment, to the store, or to my physician.

15. Help me feel good about my looks.

16. Please include me in decision making. I’ve been robbed of so many things. Please don’t deny me a chance to make decisions in my family or in my life.

17. Talk to me about the future. Tomorrow, next week, next year. Hope is so important to me.

18. Bring me a positive attitude. It’s catching. Help me respect reality.

19. What’s in the news? Magazines, photos, newspapers and verbal reports keep me from feeling the world is passing me by.

20. Could you help me with some cleaning? During my illness, my family and I still face dirty clothes, dirty dishes and a dirty house.

21. Water my flowers.

22. Just send a card to let me know you care.

23. Pray for me and share your faith with me.

24. Tell me how you’d like to help me and, when I agree, please do so.

25. Tell me about support groups so I can share with others.

Barbara’s Editorial Note:- I realize that the above is mainly for those with a terminal illness. HOWEVER, many of these 25 TIPS can be applied to our situation. Give them a second look and utilize those TIPS that do apply to your situation.

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MEDICAL HISTORY

With a THANKS to Ann Singleton of the Orlando Polio/Post-Polio Resource Center, enclosed is a “Medical History” form that we suggest you complete and give to whatever doctors you go to. If you need additional forms, give a call or make your own copies.

If you, like me, have a number of surgeries, it’s also a good idea to do a separate sheet to give to your surgeon(s). All it needs is the date of the surgery and what it was for, i.e.:

1948 Ankle stabilization

1957 C-section

Also, don’t forget to take the Anesthesia article with you to give to the anesthesiologist as well as your surgeon. If you need the article, just call and we’ll get it out to you. Barbara’s NOTE:- I have not put the Medical History Form into the web site newsletter as it was giving me too many problems converting it. If you want a form, either e-mail me (bgold@iag.net) or telephone me (386-676-2435) and I will be glad to send it to you – also the Anesthesia article.

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DUES FOR 2002:- For those receiving a hard copy of our newsletter - please take a look at your mailing label - on it you’ll see the month and year we received your 2001 dues, i.e., 01/2001 means it was received in January 2001, so your 2002 dues was due in January 2002. If your mailing label has the year first and then the month, i.e., 2001/01 it means that you indicated to us in January 2001 that you wanted to receive the newsletter but paid no dues. That’s OK as we still believe that anyone who wants information should receive it – but we do need you to return the tear sheet with either the “Dues” box checked or the “Keep me on the Mailing List” box checked.

Your dues covers the supplies we need to send out the information packets to all inquiring about Post-Polio Syndrome, any other correspondence we do, and postage for publicity and for the out-of-country (33) newsletters that we send out. We’re fortunate in that the “Free Matter for the Blind and Physically Handicapped” status takes care of the postage for the over 450 newsletters sent out within the United States. We network with approximately 60 other support groups throughout the United States, Canada, Australia and New Zealand – some 40 of these reciprocate by sending us their newsletters. We receive as many dues checks from our out-of-state members as we do from our Florida members. So, please check your mailing label and return the tear sheet if your date is due. We really need your support now more than ever. Just to keep you advised, in addition to the previously mentioned countries, our newsletter goes to Brazil, England, France, Germany, Israel, Panama, Portugal, Lebanon, Sweden, Taiwan and Wales.

For those reading our newsletter on the web-page, donations to our support group are always welcome. We do have expenses to meet.

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WHEN YOU MOVE PLEASE be sure to send us your new address. Sometimes the post-office will return the newsletter to us with a “forwarding period expired” notice on the front with your new address but most of the time they are just returned to us with “address unknown” on it. SO, if you want to continue receiving the newsletter it is UP TO YOU to make sure we have your new address. This also applies to any new e-mail address you may get. If we don’t have your current e-mail address, we won’t be able to contact you when the newsletter goes on-line.

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THIS IS GOOD IDEA!!

"Mount Sinai Hospital? Hello, Darling. I'd like to talk with the person who gives the information about the patients. But I don't want to know if the patient is better or doing like expected, or worse. I want all the information from top to bottom, from A to Z."

The voice on the other line said would you hold the line please, that's a very unusual request."

Then a very authoritative voice came on and said, "Are you the lady who is calling about one of the patients?"

"Yes, darling! I'd like to know the information about Sarah Finkel in Room 302."

He said "Finkel... Finkel... Let me see. Farber, Feinberg -- Finkel. Oh yes, Mrs. Finkel is doing very well. In fact, she's had two full meals, her doctor says if she continues improving as she is, he is going to send her home Tuesday at twelve o'clock."

The woman said "Thank God! That's wonderful! She's going home at twelve o'clock! I'm so happy to hear that! That's wonderful news!"

The guy on the other end says: "From your enthusiasm, I take it you must be one of the close family."

She said "What close family? I'm Sarah Finkel!! My doctor don't tell me nothing."

Barbara’s Editorial Note:- Don’t you often feel like doing just that when you’re trying to find out information…..

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Reprinted from Post Polio Partners, December, 2001; reprinted from Rancho Los Amigos Post-Polio Newsletter, September 1998

ASK DR. PERRY

Dr. Jacqueline Perry is a renowned physiatrist who has worked with Polios and Post-Polios for many years at Rancho Los Amigos

Q. What is the natural progression of post-polio syndrome? Will a person return to the same degree of paralysis that was experienced at onset?

A. When focusing on the natural progression of PPS it is important to understand that muscle function depends on three systems:

· Control from the brain.

· Sensation from the Periphery

· The lower motor system from the spinal nerve cell (anterior horn cell) down to the muscle.

The third system is the most important for people with PPS because if you lose the nerve, you lose the muscle. We talk about muscle weakness, but polio is actually a nerve disease that damaged or killed anterior horn cells. This makes a lot of difference in terms of exercise, etc.

ACUTE POLIO

During the acute phase of polio some spinal nerve cells died while others were injured but later recovered. Some people had paralysis, others did not. The effects were like spatter paint. If you had a lot of paint, you had a lot of damage, while others were just touched lightly. But all survivors were left with a damaged neuromuscular system.

RECOVERY

Recovery from polio entailed all three methods of recovering function:

Neuro recovery – Between 12% and 91% of the nerve cells that were injured not killed by the polio virus recovered.

Axon sprouting – New branches of the remaining nerve cells were sent out to adopt the orphaned muscle fibers. The result was that each nerve was then doing 50% more work or even up to four times as much as normal.

Hypertrophy – The muscles enlarged themselves up to about 400% so they could function.

It is not known how much a survivor’s recovery was due to spontaneous nerve generation, how much could be credited to patching by the axon sprouting and what amount was due to hypertrophy. Upon recovery polio survivors had a random disability in regard to the amount of paralysis. The amount of muscle weakness a person had was pure chance; it depended upon the amount of polio virus a person had and where it went. Some survivors remained paralyzed while others looked or felt normal although they were not.

RESEARCH

During the 1940’s Bodian traced the polio virus in the motor cells of monkeys. He found that polio, a systemic disease, affects 95% of these cells by either injuring or destroying them.

Research confirms that there is some obvious weakness as a result of polio. Dr. James Agre found that polio survivors with no current symptoms had only 80% of normal muscle strength.

Symptomatic survivors had 60% or less muscle strength compared to the normal group.

Following a four year study Grimby reported a normal 2% to 5% loss of muscle strength in asymptomatic polio survivors but for symptomatic survivors this loss may be as high as 13%. A study by Grimby confirms that weaker muscles work longer and twice as hard. This research says that it is necessary to protect this overused muscle system. The muscles that are grade 3, 3+, and some 4’s are getting all the exercise they can tolerate. In order to maintain this function, these muscles must be protected from overuse.

NOW

For many, many years polio survivors have been working with a damaged neuromuscular system that keeps working harder than ever to meet normal demands. We need to appreciate the fact that each anterior horn cell innervates several hundred muscle fibers and the surviving horn cells have been doing 50% more work than normal. Plus it appears they don’t like being over-worked!

Because of this overuse of the neuromuscular system, new weakness is now developing. Survivors may develop new weakness not only in polio muscles but also in other muscles that did not seem to be involved during the acute phase.

Although the amount of weakness a polio survivor develops in later life depends upon the original involvement, age is a factor. Anterior horn cells do not have infinite durability. They begin aging at about 60 years of age. So polio patients aged 70 and up have a natural weakness just from age that needs to be appreciated and put in perspective also.

ADVICE

At least half of the 1.5 million people who had polio have post-polio syndrome. Nothing has been added; PPS is a loss of function. The problem is that a survivor’s lifestyle now exceeds his physical ability.

Dr. Perry advises, Don’t push the system. She believes a polio survivor can control loss of function by controlling overuse of muscles. The way to do this is by making lifestyle changes, modifying activities, and pacing.

Polio survivors should know their own muscle strengths and plan accordingly. A study by Agre related to exhaustive fatigue confirms that:

· A person with normal muscles will recover fully from muscle fatigue in five minutes.

· An asymptomatic polio survivors will recover in ten minutes.

· A symptomatic polio survivor will have partial recovery in five minutes but then have further loss.

So, it becomes necessary to make lifestyle modifications. Dr. Perry advises patients to:

· Figure out what you don’t have to do.

· Get others to do the heavy work.

· Break up work periods with rest periods.

· Don’t pride yourself on working harder.

· Pain is a sign of injury and overuse so just don’t let it happen.

· Figure out what causes your pain and don’t do it again.

HOW YOU CAN HELP YOURSELF

Dr. Perry’s general activity guideline is that a polio survivor can do anything as long as it causes:

1. NO PAIN and

2. NO FATIGUE THAT LASTS LONGER THAN 10 MINUTES.

Survivors can control their destiny by avoiding overuse strain. But Dr. Perry cautions: Polio survivors who overuse muscles will lose strength.

If you are experiencing new pain, weakness or fatigue, you can help yourself now by changing your lifestyle and pacing yourself.

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MEDICARE PRESCRIPTION

DRUG COVERAGE

Did you know that if you are on Medicare and do not have prescription drug coverage, you maybe eligible for reduced prescription drug costs through the Pfizer Living Share Card. Criteria:- If you are single – are on Medicare – and have income of less than $18,000. If you are married with a joint income of less than $24,000. You can call 1-800-717-6005 for more information.

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FLORIDA EAST COAST POST-POLIO SUPPORT GROUP - Vol. 9 #5

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

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

MARCH / APRIL 2002

WE WISH ALL OUR FRIENDS

A FOUR-LEAF CLOVER ST. PATRICK’S DAY

A MOST JOYFUL EASTER

MEETING NOTICE

CHANGE OF MEETING PLACE

MEDICARE PRESCRIPTION

DRUG COVERAGE

FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

12 Eclipse Trail / Ormond Beach, FL 32174

MEETING NOTICE AND

R E S E R V A T I O N F O R M