Monday, September 27, 2004

Post-Polio Syndrome

Carol Meyer

I had polio as a child during one of the last huge polio epidemics in the U.S. I have had post-polio syndrome for the past 18+ years. During the disastrous polio epidemics that rocked the U.S. in the 30s, 40s, and early 50s ... many people had polio and didn't even know it except for the fact that they felt "flu-ish," but some of us were critically affected by the disease ... many, many died. I have been told that for those of us who did become very ill with the disease ... not one single cell in our bodies escaped being affected. Some of the results of this cellular damage are what is plaguing polio survivors today.

The polio virus attacks the nervous system, and thus many nerves are killed ... some of our nerves miraculously were able to regenerate or re-fire themselves. Unfortunately once the nerve is gone, the muscles affected begin to atrophy. Those of us with PPS have muscles that are aging faster than most people's our age ... this is because our "good muscles" have been compromised by overwork as they took over some of the duties of those muscles that became atrophied. (To be a polio survivor is to be in touch with what a miracle the human body is!) At this date, there is no way to recharge the lost nerves or to get these atrophied muscles back ... regular exercise programs only aggravate the situation for the PPSer.

Most who are my age and older have struggled to find doctors who are willing to work with us in dealing with our post polio physical problems. Many PPSers have traveled wide and far to get medical help ... they've been tested, retested, experimented on, been guinea pigs, have had to suffer the effects of medical mistakes, etc. While I have greatly benefited from modern medical technology and from some very caring doctors who were willing to think out of the box to come up with some pretty creative ways to save my life on a few occasions, I personally try to stay away from doctors as much as possible. Over the years, however, I have been fortunate to find 3 open-minded, willing-to-learn, and really terrific pulmonary specialists who have been willing to partner with me in my medical care ... but in each case, I've had to teach them about polio. I am rather atypical of most polio survivors, I have found ... in that I refuse to try a lot of the heavy-duty drug therapies that many of my polio acquaintances have subjected themselves to.

That's a little background on polio. Just so you know ... polio survivors with PPS have very individualized and varying problems ... we absolutely do not fit into any absolute mold or pattern. I will speak from my own experience.

The 2 polio viruses that attacked me were the spinal and the bulbar ones ... so right off the bat, polio changed my life. In the beginning, both of my legs were paralyzed, but after a couple of weeks I regained movement in each. Part of my throat muscles remain paralyzed, and as I get older I find that swallowing is a little more challenging at times. The bulbar virus attacks the respiratory system, and this is where my PPS has affected me the most. I have been trached for 16 years and the last 2 years I have been on a ventillator and low oxygen use 24/7. I am able to walk and still maintain as active a life as possible. I have a very, very supportive and wonderful husband!

I started using the mangosteen juice in early Feb. of this year. I take approximately 8 oz throughout the day ... but this is primarily because I love it so much ... not because any doctor suggested that I take this amount! Except for the ways that my respiratory system has been comprimised, I was quite healthy to begin with.

I had a spinal fusion to correct a very dramatic scoliosis in 1978 ... I was fused as far up into my neck and as low down in my back as was possible. The only PPS pain that I've had over the years has been caused by the fusion in my neck. I have very little mobility in my neck, and whenever I've had to ride in the car for long periods of time or have had to sit in a lecture hall for very long, I would get really bad "headaches." They would become almost incapacitating if I did not start taking Advil immediately. On trips, in movie theaters and lecture halls, in front of my computer screen ... I would experience lots and lots of pain and would take oodles of Advil! Advil was almost a staple in my diet for years!!! I never left home without it!!!

On May 1 my husband and I attended the Detroit May Majors, and it was there that I realized that I no longer got my usual "car headache" or my typical "lecture hall headache." It also dawned on me there that I actually had not had one single Advil since I started to drink the juice! I had been Advil free for 2 months and I was completely in awe of that fact!!!

Here are some other PPS-related things that I've noticed since being on the juice. There is a big difference in my trach stoma ... it is very clear ... no traces of any kind of infection whatsoever. I have always been fastidious and extremely conscientious about my trach care ... but even so, I would frequently see the telltale signs of some infection!!! I can also report that I have not had a cold or any kind of respiratory infection since I started taking the juice. And my energy level is slightly increased!

While I don't know if this is polio-related or not, I had also been plagued by a chronic bladder infection for about 1 1/2 years. The juice cleared this right up, and I have had no recurrences of that!

As a bulbar polio survivor, I am always wary of getting colds and the flu ... primarily because of the devastating secondary infections that can develop. If the juice only helped me to ward off colds, I would feel very grateful ... but it is giving me so many other gifts as well.

I have informed a lot of my post-polio acquaintances about the juice and the results that I've been experiencing; unfortunately I've not had anyone who has been willing to try it yet ... but I'm not closing the door. I have great compassion for every single one of them. I believe that they are afraid to get their hopes up about some other treatment for their PPS problems as they have tried many things ... only to be disappointed. It is my opinion that many are simply in deep resignation about their present medical situation.

I feel quite confident that I am only going to see more and more positive results as I continue to take the mangosteen juice! My only regret is that I didn't have access to it in the early 1950s ... I am sure that had I been taking it then, I wouldn't have had to have played host to the 2 polio viruses that entered my body and attacked my neuro-muscular system! But for today ... I am thrilled with our juice and the results that I'm experiencing.-

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