IPPSO NEWS MAGAZINE

 

From the Editors Desk

Mike Isaacson
Those of our members who joined IPPSO from our predecessor (P.R.Y.S.) may remember me from the previous newsletters that I edited. Hello again to all of you! "Long time no see", and I am more than pleased to renew our friendship. To our newer members whom I haven't met until now, Hello to you all! We meet for the very first time. I look forward to a long and enjoyable companionship with all of you. I will tell you more about myself in a future issue because there are many more important people to include in this first issue.

So Whose Magazine is this Anyway?

Mike
Actually, it's yours. I would like to invite each and every one of you to send me a story. It can be your polio story, your PPS story, or a piece that has nothing at all to do with either polio or PPS. Perhaps something that happened to you during your vacation, when you were at a movie, maybe on your last trip to a baseball game or the Shopping Mall, how the tin of jam was on the top shelf at the supermarket and fell on your head when you tried to reach for it from your scooter. Write whatever you wish (every story is important to me) and send it to me at magazineeditor@ippso-world.org and I will publish it in the next issue of the magazine. So here's looking forward to hearing from you very soon!

The Race

I have told this story before in a previous edition of the old magazine, but I relate it here once more in all humility, because it exemplifies our strength and determination when we all pull together and work together as one. - Ed.

It was a motley collection of unfortunates that assembled on the starting line. One of them was so weighed down by his leg braces and held his crutches so awkwardly that it seemed as if he wouldn't be able to move at all when the starting gun was fired and the race was under way. Another limped badly on a withered leg very much shorter than the other, lurching unsteadily as he wrestled with his cane, trying to steady himself. A third competitor who could walk, but only with obvious difficulty, waited patiently for the race to begin. Another, with a very twisted body also waited for the race to begin. Yet another had legs as thin as twigs and moved only in apparently uncontrollable jerking movements. Never before had so many mis-shapen individuals appeared on a starting line and the spectators sat and stared in disbelief, tears in their eyes. How on earth could any of them possibly take part in this kind of event?

The official raised his starting gun and fired, signifying that the "race" had begun. Slowly and painfully they all began moving along the course. Every step they took was painful and they screwed up their faces in a mighty effort to keep going. After three minutes, they had moved scarcely five yards along the course. The fellow with the thin legs like twigs was leading by a yard when there was a sudden loud cry and they all turned back to see what had happened. The guy with the leg braces had fallen and his crutches had spun across the track and out of his reach. He was lying on the ground, utterly helpless. Some of the spectators moved involuntarily to help, but before anyone could get to him, and without any hesitation at all, every competitor turned back to help him to his feet and pick up his crutches for him. Then they all linked arms and forming a long line right across the width of the race track, they made for the finish. They took strength from each other, keeping their balance much more easily now. Their faces beaming, wreathed in smiles and obviously enjoying themselves, they broke the tape simultaneously in a collective dead heat for first place.

The cheering lasted for twenty minutes.

Meet Shari Co-Founder of IPPSO

Shari

I write my own story with humility; because I learned at an early age not to be prideful nor to call attention to myself. Like many of you, I too come from a dysfunctional family.

I was one of the lucky children. Polio left me paralyzed from the waist down at age four, in 1946, but only for only three days. It happened whilst kneeling on a stool at my girl friend's home doing dishes (oh, it was fun to do dishes at that age). I couldn't move my legs to get down. She gave me a piggyback ride home and set me down at the front step of my home. The next thing I remember was my grandparents and my father coming home and taking me to the hospital. I will never forget the spinal tap! So many staff members holding me down as I screamed at the top of my lungs. Mom counted twenty-two needle holes in my back when I got home. But I was one of the very lucky kids.

They scheduled me to start the Sister Kenny treatments four days after entering ICU. Normally there were six to eight doctors ringed around my bed hammering on my legs and knees, but only one doctor came into my room that day. He said, "I want you to see if you can get out of bed and walk". So I got out of bed and walked! They said it was a miracle. I say that it wasn't! I just didn't know that I could not walk! I thought that they had left the tape on my back from the spinal tap, and it had glued my back down to the bed! My family never spoke about this incident in my life. I was left with a weak right eye and weak ankles but I never thought anything about these issues. Now I know that it was probably the results of my short bout with polio.

It was much harder in 1985 when I could only walk a few steps at a time after a small auto accident. During 1984 I had been in so much pain. I couldn't sleep at night, and would awake just as tired as when I went to bed, and the accident exacerbated these symptoms, and left me so weak that I could only take a few steps and would have to rest. This lasted almost a year. The doctors discussed all sorts of things but only after about two years, they finally diagnosed me with Chronic Fatigue Syndrome (CFS); this diagnosis lasted for about six years. The only difference I could see in my CFS friends and myself was that it was a lot harder for me to walk than it was for them. As many of you know, the symptoms are similar to PPS and neither one has a marker to define either syndrome.

It took me six years to get CFS acknowledged; and to get the first piece of legislation through the California State Senate (which finally acknowledged CFS as a true syndrome). It was difficult trying to get around in the Capitol building; three times they had to get a wheel chair to get me out of the building. It was embarrassing and humiliating as I had formerly worked in the Senate Public Employment and Retirement Committee Office for five years, and I was the Committee Secretary. I kept remembering the day I assisted a tiny lady (who was there to testify for a Bill for the disabled) to get her electric wheel chair into the bathroom as she could not take care of herself. Never did I dream that I would ever come anywhere near what she was experiencing! Little do we know what is to come in our own lives?

The reward was great though; California was the first state to acknowledge CFS and thus went the rest of the states and then the Nation! The group I was working with finally went to the United States (U.S.) Congress. I had to ask my dear friend to take my place; I had neither the money for travel, nor the ability to walk the halls of the U.S. Capitol! The work with CFS is written about in a late 1980's copy of the CFIDS Chronicle. I do have copies somewhere, but where?

My same dear friend took me to one of the leading CFS experts, Dr. Daniel Peterson in Incline Village, NV. The first thing he told me was, "I am not looking at CFS, yet will not put a label on you and put you on a shelf until I know what is wrong with you". What a shock! He based his diagnosis on the fact that my cognitive skills were too good, so it couldn't be CFS! Yet the pyschosemetric test showed that I had probably lost 20% of my IQ, and my short-term memory was not good!

Dr. Peterson told me to do two things. One was to get on the little scooter that I had found second hand and stay on it; and the second was to get on the internet and learn everything I could about PPS. I did both. My Internet search, led me to PRYS, and Sparkie Lujan. With my experience as Legislative Liaison for the Chronic Fatigue Association, based in California's state capital, Sacramento, I offered to jump right in and do what I could for PRYS. I worked in PRYS for about four years, my last position being that of Vice President. When Sparkie had to close PRYS due to her auto and boat accidents, Harald Hasle asked her if he could carry on the work she started if I would work with him. At that time, Harald was International Vice President of PRYS). Sparkie agreed to let us carry on the work she had started, so Harald and I co-founded the International Post Polio Support Organization (IPPSO) in 2001. Unfortunately, Harald has been very ill during the last couple of years with upper respiratory problems and almost died last year. It saddens me that at this time, he is unable to work with us at IPPSO, but we hope he will one day be back with us. Harald set up, maintained our website, and acted as President of IPPSO for several years. He is truly the wings beneath IPPSO, if he had not asked to continue the work PRYS started; we would not be here today.

There have been many others who helped IPPSO become what it is today, Mary Gildea is one of them. She finally relinquished her position as Secretary two years ago. It was a sad day for us all, but her health could no longer stand the long hours that she so lovingly devoted to IPPSO. There were so many others who worked with us over the years, too many to name, but I know that each of you know who you are, and that we all appreciate your work!

I often ask myself why I spend so much of my life and time trying to get help for those with PPS and CFS. I have often wanted to quit and just live my life and enjoy my family so many times, especially when IPPSO did not have many helpers and when the doctors would tell me I had more spinal and arthritic problems than PPS. To be honest I cannot answer that question. I can only tell you that not having your body in top physical condition causes one to think a lot about life. I keep reading books, or seeing movies about people who for one reason or another took up a cause and tried to make a difference. Some achieved only small changes and some were huge world changes. I do believe in a higher power, and that we each have a reason for being on this earth. Maybe this is just part of the reason I am here, I do not know. Have I helped many people? Some have thanked me for my help, yet I am only a vehicle; if someone has received help of some sort, I am merely a catalyst.

Today IPPSO has a wonderful strong Board of Directors, without them we would not be here. Diane Ploussard has been with us almost since our inception. Barbara Gratzke, Vice President joined the Board about three years ago. Barbara has done wonders in the world of PPS, disability and IPPSO, if it were not for Barbara, IPPSO would not have co-hosted our Miami PPS Conference this year. We have been very fortunate to have added some new "working" Board members, and to have assistance with our website again. I am very happy to say that I foresee that IPPSO will move forward with great strides this year!

Hehehe Corner

People who live in stone houses shouldn't throw glasses.

Question and Answer about stretching and Fragile Neurons

Q. Does stretching muscles that have fragile neurons supporting them seem somewhat contra-indicated?
A: The cell bodies of neurons are in the spinal cord. When you get down to the end fibers they are very plastic. As a matter of fact new connections are being formed all the time and old ones are breaking. There is an equilibrium problem in that more break than form as we get old, and that happens more quickly during PPS. You cannot break the connections to myofibrils (muscle cells) by stretching. There is just too much slack. On the other hand if you do not stretch the muscles will become shorter and sclerotic with no use. If you don't stretch it will be easier to pull muscles and you may find it difficult to even turn your head to see traffic coming when you are in the car as your neck muscles, back muscles, and leg muscles become too tight. Even if you are a Yogi I would not worry about stretching causing loss of nerve connections. I'll bet if you could observe muscles under the microscope as you stretch them you would be surprised to see not very much movement at all on the micro level.

Heheheh Corner

Practice makes perfect, and we already know that nobody's perfect........ so why practice?

Lilliana Marasco Girrado
Asociacion Post Polio Litaff A.C_Mexico

A tribute by Shari

Lily

It is a great honor to try to tell you about my dear friend and sister, Lilliana Marasco Girrado. Lily and I have worked closely for well over six years at least, she is truly one of my heroes! I am humbled to try to share some of her accomplishments with you. Lily never ceases to amaze me in all that she does!

This acknowledgement of her work will be a surprise to Lily. I want to thank Mike and Yvonne Isaacson our new IPPSO Magazine, Editors for the idea! Not an easy task to put this on paper but I will do my best and am truly honored to be able to share Lily's story with the world of PPS!

Many of you have not heard of the accomplishments of Lilliana Marasco Girrado, President and Founder of Litaff A.C. Mexico, and now Counselor to the Health Secretary of Mexico, in the Pinos (Capitol) of Mexico. She not only represents polio and post polio syndrome (PPS) she represents all of the disabled in Mexico. Lily (as I call her) established the first recognized PPS non-profit organization in Mexico. She did this with her own funding and that of her husband Ernesto.

Forgive me Lily, if I leave out some of your accomplishments, as there have been so many! Lily has held almost yearly conferences for those suffering with post polio. She has brought doctors and other medical professionals in to teach them about post polio and how to take care of themselves as best they could. She would even buy small gifts to attract the people to these conferences; as being disabled is something that many people in Mexico find disgraceful. At the last Conference Liliana Marasco Garrido and Faustino Navarro Santos, explained medical problems facing polio survivors at a meeting in Mexico City, October 29, 2007. This has been only a small part of her work.

Several times Lily went to her government for help for those who could not walk, to assist in getting PPS recognized and generally, for help for "her people". Lily herself is wheel chair bound and has been very ill over these last several years, but she doesz not waver from her mission.

One of my favorite stories that Lily shared with me was when she refused a kiss on the cheek from a very high government official, while attending a political meeting. The politician asked her, "Why?" and was very surprised when Lily told him, "You did not answer my calls for help, so I will not accept your kiss!" Only Lily could do this! (Having worked in the California State Capitol I could not help but laugh at her bravery!) He was quite surprised when he heard her name. He had worked with her grandfather, whom he held in high respect, and used to hold Lily on his knee when she was a baby! An appointment to see the Health Secretary was set up that very night and before long, Lily began working alongside the Health Secretary in various areas.

From this position, Lily was able to inform Mexico's Health Director that the live vaccine they were using for their children was unsafe, as it could actually infect them with polio and they could carry it to others. Her advice went to the rest of Mexico's Government, and thanks to Lily, they no longer use this outdated vaccine. I am very proud of what Lily brought about in Mexico!

The next huge step that took place with Lily at the helm of Litaff A.C_Mexico was when she joined Mexico's Health Secretary and formed the doctor's and other medical professional's first educational seminar at the Pinos in Mexico on PPS. Dr. Carlos Vallabona spoke at the Mexico Capitol Building on "What PPS is, and how to Treat it." This was a great day for Mexico and a great accomplishment by my dear sister Lily, together with Mexico's Health Secretary and Dr. Vallabona.

Lily became one of the six appointed Health/Disability Counsellors, who work with the Health Secretary and represent Mexico's non-profit organizations for disability; achieving this appointment was a high honour for Lily as there are many groups who seek the opportunity to sit on this council. The group works to defend the disabled in Mexico; they help set guidelines in all areas, to establish dignity in a disabled persons' social life without discrimination or exclusions of any sort. Not only was the polio vaccine changed, but also PPS was recognized and the doctors were educated, also, many overall changes for the benefit of the disabled implemented this year.

Lily at the Second National Health Assembly





Here is a picture of Lily at the Second National Health Assembly; it took place at the Health Secretary Building.


Although this does not tell you all that Lily accomplished in Mexico, her main goal for 2007 finally achieved. Liliana Marasco Garrido, President and Founder, of Post Polio Litaff A.C. and most important as a PPS survivor herself, will help take care of the very first POST POLIO CLINIC established in Mexico!

This is a part of a civil, non-profit organization and Lily is working and collaborating in the structure of this facility! Lily assumed, with honor, the charge Dr. Ibarra gave her and will be working twice a week at the clinic. She will have first contact with each PPS survivor, (as she describes her work, "Like a support therapist, where each patient can gain more confidence before entering the clinic"). Then they will be registered, and attended by the Rehabilitation Therapist, Dr. Antonia Garcia Medina, Director of the Clinic. Dr. Medina is 85 years old. She took care of all the polio children in Mexico during the last 50 years, was Lily's therapist and is very capable carrying on this work.

In Lily's last letter she said, "My promise to all those in Mexico with PPS, was that one day, we would have a PPS Clinic. That promise was made almost five years ago next January, and it is now a reality, I have not failed them. I FINISHED MY MISSION!"

Lily's Award for Disabled Work





What can we say in this one humble sentence?



LILY, WE ALL HOLD YOU IN HIGH HONOR
AND THANK YOU FOR WHAT YOU HAVE DONE IN
THE WORLD OF POLIO, POST POLIO, AND FOR MEXICO

Carrie Cline Pike

Who is she? Well, in 1953, Carrie Cline Pike now of Gold Hill, Oregon, contracted polio at age 18 while employed by a large pharmaceutical laboratory then seeking a cure for polio. The laboratory had live polio virus samples, the virus was mishandled and her entire workplace contracted the virus. Most of her co-workers died.......... Read her story at http://tinyurl.com/yo3xzv just click on the link.

Hehehe Corner

What is the difference between involvement and commitment? Think of Ham and Eggs. The chicken is involved.
The pig is committed!

And a Final Hehehe

A successful husband is one who makes more money than his wife can spend. A successful woman is one who can find such a man!