Franklin Delano Roosevelt
Thirty-Second President of the United States of America
| Vol 2 No 2 February 2008 | Editors: Mike and Yvonne Isaacson |
It is ability that counts, not disability
From the Editors Desk
Mike Isaacson
Whilst browsing through the internet looking for material for this month's issue, I came across a list of famous people who had contracted polio. There are quite a few of them, but at the top of the list (for me) was Franklin Delano Roosevelt, probably the most famous of all polio survivors. I remember that my mother always held him up as an example to me of what I could achieve if I put my mind to it. "Roosevelt says......." was the sentence with which she began most of her talks to me about what I could achieve if I tried hard enough and often enough. FDR was my hero, and still is. I hold him in awe for what he achieved despite having contracted polio. His birthday was on January 30th and that date was also the very first of the March of Dimes, which he inspired. He spent a large part of his personal fortune in buying Warm Springs, which he made into a haven for many polio survivors who might otherwise have fallen by the wayside..... and he did so much more too! His "New Deal" policy lifted the whole of the American nation to an economic recovery that very few, if any, had believed possible in so short a time.
I am not an American citizen, but that one American personifies the whole nation to me. He is the reason that I achieved what I did, despite polio! There are others too, polio survivors who never made it to the White House, but who beat polio, just like you, and you, and you also. Yes, all of you. We all fought against "the crippler" and we have all won. Just like FDR. As far as I am aware, Roosevelt was spared from the effects of PPS and never suffered its' devastating effects like we do now. He died a long time ago, but his spirit still lives within us, and it is his extraordinary determination to succeed that teaches us how to cope with, and live with PPS
A Tribute
Franklin Delano Roosevelt
Thirty-Second President of the United States of America
Cilla Webster
Go to "Google" and type in her name. You will be very surprised at the number of websites that come up in which this remarkable lady has had a hand. Here is her story.......
When she was 26 years old, Cilla Webster believed that her life was almost perfect. She had recently had a baby and had built herself a career as a legal secretary. When she three years old, she had contracted polio, but thanks to expert medical treatment, she had been walking almost normally since the age of thirteen.
She didn't realize it at the time, but after several years of leading a near-normal life, she was starting to develop post-polio syndrome (PPS). Cilla first noticed a weakness in her legs. That weakness gradually worsened and started to affect more muscles in her body. By the age of 32 years, it became very difficult for her to breathe. Her condition continued to deteriorate and by the time she reached her 38th birthday, she had to be hospitalized because she had lost the use of her legs and had severe breathing problems.
Cilla Webster
Cilla went from one doctor to another and was diagnosed with several different conditions, ranging from asthma to various neurological conditions. Finally, in 1997 (22 years after her symptoms first appeared), Cilla did an internet search on Google, typing in the keywords "polio" and "pain". This led her to several articles on PPS. She started e-mailing PPS specialists in the United States. They advised her to rest her muscles as much as possible. She now uses a ventilator 24 hours a day to rest her diaphragm muscles and has stopped all forms of exercise.
Should polio survivors be advised not to exercise at all? "One cannot do that," says Cilla. "If you have had polio, you cannot prevent PPS and one cannot predict whether someone will develop PPS or not. Why restrict someone's life if they might not even become one of the 76% who develop PPS. People just need to be made aware that PPS exists and educated about how to look after themselves, for example by not overexerting their muscles."
"If I had known that such a syndrome existed, I would have led my life very differently," says Cilla. "I was very active, I swam and I walked a lot and even
backpacked through South
Although Cilla is now almost permanently bedridden, she keeps herself as busy as possible. When she learnt about PPS, she started the South African Post-polio Syndrome Support Group the name of which was later changed to Post-Polio Network RSA, and she has received an international award for raising awareness about the condition. "There are hundreds of people who are suffering," she says. "some cannot afford wheelchairs or ventilators, some are just sent home to die, and others don't even have access to basic information."
She also launched a "Knit or crochet for polio" campaign to encourage parents to have their babies immunized against polio. Mothers who support immunization campaigns were given blankets as a token of appreciation for being responsible parents. (A blanket is a highly prized possession amongst the poorer South Africans.) The campaign is temporarily closed due to Cilla's breathing difficulties. Immunization is still the only way to prevent polio, and therefore PPS. Even though the last case of polio appeared in South Africa many years ago, cases have been reported in neighboring countries where routine immunizations have not been maintained because of instability. Children are at risk as long as the poliovirus is circulating.
Cilla refuses to give up. "If you ask me to stop hoping, you will take away my will to live. We all have the same 24 hours. What you do with it, is up to you."
PPS has taken its toll on Cilla. After several surgeries, her bladder was removed and she was fitted with a bag, her stomach was operated on and she is one of very few people who no longer have a belly button. She has kept her indomitable spirit alive despite having been bedridden for the last fourteen years. She is dependent on a BiPAP machine to help her to breathe more easily, and it is only recently that she has had to buy a stock of oxygen cylinders to help her breathing during the wave of electricity failures presently plaguing South Africa.
Recently, her husband was forced into early retirement due to illness. Cilla has given up all activities but retains her website and will answer queries. What she has achieved is huge, and we all owe this great lady a debt of gratitude.
Your work and your achievements will never be forgotten, Cilla!
The final word is from Cilla herself........
Please be advised that due to my inability to breathe without my BiPAP machine when there is no electricity and my arms getting weaker I am closing down the Post-Polio Network. I have already had two heart attacks and cannot afford any more ill health.
There are many sites overseas where incredible information is available.
Good luck and God bless.
Cilla Webster
Your work and your achievements will never be forgotten, Cilla!
Old Chinese Proverb
"Be not afraid of going slowly; be only afraid of standing still."
Meet Barbara Gratzke
(No ordinary Lady, this!!) Ed.
Barbara Gratzke is the Vice President of IPPSO. She has college degrees in Economics, Mathematics, and Accounting. Her professional career includes working as a chief accounting officer, auditor, and cost accountant for several companies, being a comptroller and utilities rate analyst for the City of Fort Worth, Texas, and owning her own accounting firm for small businesses and income tax preparation.
She has volunteered extensively in her communities. She was President of her Homeowner's Association from
Bill and Barb Gratzke
In December 2004, Barbara was honored by receiving the Concern Award from the Health Foundation of South Florida in recognition of her leadership roles that brought about changes that made a difference in the health and lives of South Floridians. The Health Foundation press release reported.... "In spite of her physical disabilities and chronic fatigue, she has demonstrated her ability to see the bigger picture and go directly to those in power to say 'yes' to change. She volunteers her time and works incessantly to increase the quality of life for people with all types of disabilities. Many of those who have been helped through Barbara's perseverance were previously ignored by the community at large and had nowhere to turn for assistance."
Her disability advocacy resulted in County implemented programs and services that increase the quality of life for people with disabilities. Her involvement at the Center for Independent Living allows her to obtain feedback on consumers needs, offer resource information, train disability advocates, and mentor others in the disability community.
A polio survivor, herself, she is striving to enhance the lives and independence of polio survivors suffering from PPS through education, advocacy, and networking. Locally, Barbara's current undertaking is her most ambitious and attempts to resolve the issues of medical misdiagnosis and mistreatment which often results in the deterioration of the post polio condition. In April 2005, she initiated and is currently fund raising for the Post Polio Treatment, Education & Research Center in partnership with the University of Miami School of Medicine who started an Interdisciplinary Post Polio Clinic in May 2005.
She was the conference planner for the IPPSO co-hosted April
Nationally and internationally, she chats and emails on the Internet, with other polio survivors and gives and gains emotional support and shares ideas and resources with others who are struggling to remain independent and integrate into their family-life and communities as best they can.
Hehehe Corner
Ever wonder what the speed of lightning would be if it didn't zigzag?
The Miami Post Polio International Conference
A Report by Barbara Gratzke
My husband, Bill retired in April and we left South Florida the end of May 2007 for a six month sight-seeing trip (and to visit friends) in our newly-purchased
wheel-chair accessible motor home. It was a very convenient way to travel and we visited 14 states in the western USA. We could stop whenever we wanted to,
particularly if I was fatigued, and traveling in a motor home we saw much of the countryside too.
When I began using my scooter all the time, it was very difficult to travel or visit our friends and family. They don't have wheel-chair accessible homes and hotel rooms are not always that accessible either.
We attended many Post Polio support group meetings along the way and met PPS leaders that I had made friends with over the Internet. We visited many old friends that we had made through the years as Bill's job took us from Illinois to Texas and then here to Florida. We attended the annual Handicapped Travel Club Rally in San Dimas, California in September and met a lot of people and shared ideas on how to travel and ensure accessibility.
Our April 2 ½ day Post Polio International Conference held in Miami from April
We had a snafu with the programs and thanks to PPASF members Susan Abel Postal and Rene Abel, as well as my niece Carrie Brown who recopied and edited the program
to a .PDF computer file, we did get all thirty pages put together in time. Susan Abel Postal gave us totes with the conference logo. PPASF
Many thanks to our conference sponsors: Truly Nolan of America, Inc; Caption First, Inc; Center for Independent Living of South Florida; Peter and Yiska Moser;
Our expert Post Polio doctors who all spoke on Monday and others in the audience during that medial educational session said it was the most fun and best educational medical conference they have ever been too. They liked it so well that they canceled their appointments and came back for parts of Day 2 and 3!
We had lots of vendors and they spoke on their new products and how they might be of benefit to polio survivors to increase their quality of life. Our conference leadership sessions went very well. We identified priority issues and formulated ideas to create more Post Polio Awareness and gain more resources for polio survivors. All were excited about the idea of forming a World Polio Group. The idea came from Kim Dowds, who was the Assistant Director of the March of Dimes, Polio Canada. The aim is for PPS leaders to come together to share ideas and initiatives, so that polio survivors worldwide can speak with "ONE LOUD VOICE". To this end, an e-mail list was set up to enable members to talk with one another easily, despite living on different continents. We all agreed that our strength comes from large numbers of polio survivors working together. IPPSO is working very closely to make strategic alliances and assist in this effort in any way possible. We are networking with the Italy PPS group, who held a conference in 2007 to network all the European countries PPS groups, the Brazilian and Mexican PPS groups to unite Latin and South America, and also Australia and New Zealand.
Time is just whizzing by and unfortunately I am getting less done now than I did last year. I was exhausted after the conference and didn't have the Internet connection or the energy to do all the after conference follow-up that needed completion. Written transcript of many of the conference speakers' sessions and the recording of camera tapes to DVD's are still in progress because many of the volunteers involved in this process have had major medical issues since the conference.
I enjoy hearing form all of you so please feel free to email me at Ppsofsouthfl@aol.com Also I encourage those that have not done so to join our Yahoo bulletin board at http://health.groups.yahoo.com/group/ippsobulletinboardchat.
Photographed at the Miami Conference
 Barbara Gratzke, Mike Kossove and Dr Walter Bradley holding one of his four awards |
 On the dance floor after dinner on Tuesday |
How to Cook a Coot
Nothing at all to do with Polio or PPS, this is an old family recipe handed down for many generations.
(The Coot, or Mud Hen, is a one pound water bird that resembles a duck).
Take one coot. Pluck and clean the bird. Put a brick in the cavity. Add salt, pepper, and garlic. Place in a large casserole dish. Add 3 cups water. Cover the dish and bake for 12 hours. Add 1 bottle white wine. Return to oven for a further 12 hours. Add 4 chopped onions and one more bottle of white wine. Bake another 12 hours. Continue adding 1 bottle of white wine every 12 hours until the brick is soft. Then discard the coot and eat the brick.
Some Famous People who had Polio
This list (by no means complete) is dedicated to all Polio survivors famous or not, many who are now facing the second half of their lives with Post Polio
Syndrome... unfair as that is... and are joined by others who also had Polio, but who are just a little more recognizable...
Alan Alda: actor, writer, director
Elmer L. Andersen (1910-2005): former Minnesota Governor, businessman
Lionel Barrymore (1878-1954): actor
Kim Beazley: Australian Labor leader
Charles E. Bennett (1911-2003): longtime US Congressman, Florida
Ben Bradlee: former editor of the Washington Post
Jean Chrétien: former Prime Minister of Canada
Arthur C. Clarke: author
Francis Ford Coppola: director
Bill Cullen (1920-1990): game show host
Claudius (10 B.C. to 54 A.D.): Emperor of Rome
William Orville Douglas (1898-1980): Associate Justice, US Supreme Court
John East (1931-1986): US Senator
Mia Farrow: actress
William Alexander Gadsby: Hall of Fame
John Hager: Lieutenant Governor, Virginia
Lauro Halstead: doctor (physiatrist)
Judith E. Heumann: pioneer in Independent Living Movement
Marjorie Lawrence (1908-1979): opera singer
Ida Lupino (1917-1995): British actress
Jack Nicklaus: golfer
Itzhak Perlman: internationally acclaimed violinist
Owen Roizman : cinematographer, 5 Oscar nominations
and Lifetime Achievement Award
Franklin Delano Roosevelt (1882-1945): US president
Sir Walter Scott (1771-1832): father of historical fiction
Siptah: Egyptian Pharaoh (lived 20 years around 1200 BC)
Dinah Shore (1916-1994): singer
Lord Snowden: photographer, UK (Princess Margaret's former husband)
Renata Tebaldi: Italian Opera Singer
Victor Woodrow Wertz (1925-1983): Baseball All-Star
...................... and hundreds more!
Hehehe Corner
If you ain't makin' waves, you ain't kickin' hard enough!
Whatever Happened to Polio?
A very interesting web site from Mike Kossove, Director IPPSO
http://americanhistory.si.edu/polio/howpolio/index.htm
STROKE: Remember The 1st Three Letters.... S.T.R.
From Shari
A friend of mine who is a Nurse sent this to me and encouraged me to include it in the magazine and to spread the word. I agree. If everyone can remember something this simple, we could save many folks.
Stroke Identification
During a BBQ, a friend stumbled and took a little
A neurologist says that if he can get to a stroke victim within three hours he can usually reverse the effects of a stroke totally. He said the trick was recognizing a stroke, diagnosing quickly and then getting the patient medically cared for within three hours.
Remember the first three
S * Ask the person to Smile.
T * Ask the person to Talk, to say a simple sentence coherently (i.e. It is sunny out today)
R * Ask the person to Raise both arms.
If he or she has trouble with any one of these tasks, call 999/911 immediately and describe the symptoms to the dispatcher.
Another sign of a Stroke Ask the person to 'stick' out his tongue. If the tongue is crooked, if it goes to one side or the other, that is also an indication of a stroke.
A cardiologist says if everyone who reads this tells ten people, you can bet that at least one life will be saved.
Hehehe Corner
As a young man I used to win races
As an old man I never ran last.
As an old paraplegic using leg braces
A quarter mile an hour is Damn Fast!
The Jar of Life
Author Unknown
At the start of class one day, the teacher placed a big jar on her desk. Then the teacher took some large rocks and placed them carefully into the jar. When no more
rocks would fit inside the jar, she asked her students if the jar was full.
All the students said "Yes!"
The teacher said "Really?"
The teacher then poured gravel into the jar filling the space between the big rocks. Then she asked "What about now? Is the jar full?"
This time they thought that they had figured the riddle out.
"Yes!" they shouted in unison.
"Not quite." the teacher replied.
She then poured some sand into the jar filling all the spaces between the rocks and the gravel. The teacher paused for a minute to let the class think. Then she
asked, "What life lesson did you learn from all this?"
One student jumped up and said, "No matter how full your life seems, you can always fit more in!"
"Not quite." said the teacher.
She emptied the jar and called the student up to her desk. She gave him the rocks, the gravel and the sand and asked him to fill the jar again, but this time, with
one difference. He had to put the rocks in last. No matter how hard the student tried, he could not do it. The teacher then explained,
"If you don't put the big rocks in first, you will never get them all in. The big rocks represent the really important things in your life, such as family and
friends and personal growth. If you fill your life with small things, you will never have enough time for the important things that make life worth living."
Let me end by asking you a question.
What are the big rocks in your life?
Question of the Week
This is the announcement that the American Academy of Orthopaedic Surgeons circulated. It would be great if you could recruit people to contact the Academy through Sandy Gordon and see what the group can come up with.
The AAOS 75th Anniversary Project Team is looking for polio artifacts to display as part of the AAOS 75th Anniversary Exhibit at the Annual Meeting in March. One item the team is specifically looking for is polio braces. If you have any polio artifacts to loan or donate please contact Sandy Gordon at AAOS: gordon@aaos.org
Hehehe Corner
Stupidity is not a handicap. Park elsewhere!
Last, but Certainly NOT Least!!
From Shari Fiksdal
We have said little about dues and donations this last year, but we find that it is way past time to remind you that we are a non-profit support organization run by
your yearly $20.00 dues and donations.
We thank those few members who have been faithful and sent in their dues, but this doesn't meet all the needs of IPPSO to provide support for its members. If it had not been for the $10,000 Concern Award that Barbara Gratzke received to honor her work with the disabled in Miami Dade County, Florida (that she donated to the local charity of her choice) her Miami Post Polio group; we would NOT have been able to put on our April Conference last year. The willingness of the Miami Post Polio group to co-host the conference with IPPSO and Barbara's dedicated continued efforts to get others to donate towards the conference is what brought about a very successful conference. We should all be proud and happy to know that at the conference IPPSO and Barbara's local support group, the Post Polio Association of South Florida, were what brought together nine other countries and the beginning of joining them together in a 'world' organization. Here we can ALL work together to fight against polio (yes it still exists) and the teaching about PPS! What really saddens me is the fact that after all of Barbara's work we still ended up in the red as far as monies for the Conference!
Do you want to know why we need funding? Well, first, we must pay for our web hosting which is about $140.00 a year, plus a webmaster, which we have not had because it cost several hundred dollars a month. We now have some temporary donated help, but to keep our site updated and helpful to all we will need to be able to pay someone to do this. Thus far, we have not found a volunteer webmaster since Harald had to step down due to his health.
Next, we have Board members and volunteers who spend many hours performing the administrative duties needed to keep IPPSO running, communicating with all the members and other PPS leaders, researching and reviewing information on PPS to keep all updated, and working on projects that will bring more PPS awareness. Many don't realize all the time it takes "behind the scenes" to keep track of members, change of addresses, sending out letters and messages, accounting reports, complying with governmental regulations of our nonprofit, ordering and reading newsletters and books related to PPS, and going to seminars to learn more.
We, too, are polio survivors on limited incomes. We need to try to help offset the costs of computer repairs, stamps, computer paper, ink jet cartridges, and other small office supplies as needed to keep our volunteers able to keep functioning. We still need money to set up the voice chat room that so many of you want. We need money to reach our goals of helping those with PPS who need medical equipment (if only shipping costs of exchange of used equipment). We would like to create an Internet Continuing Education course on PPS for medical professionals. We need to print up a brochure for people to take to their doctors. We need to assist with minimum monies towards getting research underway that would benefit those with PPS. We could go on and on with the list. The fact is we NEED YOUR HELP.
If you would like to designate your donation to go for a specific reason, let us know. We will set up a restricted accounting fund.
As I type this, it is sad to say I can count on all ten fingers the names of those members who have kept IPPSO alive for the past seven years by their volunteer work. They know who they are, do you? At this point, I must thank Harald Hasle, IPPSO Co-Founder, Webmaster, and Past President, and Mary Gildea, Secretary, for the many years of work they put into IPPSO, as they can no longer physically be here to help! I thank you sincerely; we truly miss you both.
Please go to our newly moved website at www.ippso-world.org where you will find current information on where to send your dues and donations via pay pal or check and let us know you care. You can request a receipt (we now have an Assistant Treasurer who can do this for us!). While you are there, if you see something that needs correction please let me know Fiksdalpps@yahoo.com so I can have our temporary volunteer webmaster Jim F. fix it while he has offered.
Not everyone can volunteer his or her time and energy. Nevertheless, can you help IPPSO be all that it is meant to be by paying your dues and making some special donations? Let the Board know we have a reason to keep working so hard.
Editors Note :- We need our own "New Deal". Roosevelt did it for America (see above) and you know what? You can do it for IPPSO!!!!