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    Old 05-25-2011, 02:35 PM   #1
    summerguy2007's Avatar
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    I could use some constructive feedback

    I had polio in Miami in 1953 as a young boy. Fortunately, I was able to walk out of the childrens hospital after a few months treatments. Since about 35, I started having imbalances in my hip/back musculature. My right hip would stick out to the side and I walked at an angle. It affected both legs so I could not get off the floor., until after I took a muscle relaxant and painkiller. I saw an MD and a Chiropractor the two times this occurred. I found the Chiropractic to be very helpful and was able to resume my usual lifestyle.
    I'm aprox. 66 now. About 8 years ago, my right leg failed to support me and I fell. For about 2 years after that, I had no problems. About 5 years ago on a long auto trip my right leg went numb. After that, it failed to support me a few times.
    I'm a veteran and use the VA. They did full brain & spine MRI's with contrast, and have X-rayed my lower back pelvic areas twice, and my right knee, since sometimes it is a little painful on the inside part around the kneecap. Since then, I do PT stretches the VA suggests such as knees to chest and hamstring stretches. They do help loosen me for mobility. However, I tire easily and usually need to nap in the afternoon. Both my feet barely will lift from the floor. I feel sometimes they are like dead weights. I do limited walking in my home. I tried in the past to walk the inside perimeter of Lowe's or Walmarts, but am usually barely able to make it back to the car again and get in. Sometimes I take Cyclobenzeprine (a small dose) and that seems to calm things down a bit. I do ab crunches in my chair. No matter what I do, the problem does not get better.
    I've thought about going to a Chiropractor again, but due to my age I don't want to make it worse. The VA may send me to an Acupuncturist MD they have. I should know soon about that. My Va doctor said it's most likely post-polio syndrome, but none of the doctors will say for sure that it is or is not.
    I have seen 4 separate doctors there. I have a wheelchair so I use it when I get out, otherwise I use a walker. I usually have little or no pain. Sometimes,
    MY foot or both feet slant outward a little, so that I am not walking on the flat of my foot, rather a little to the outside of it or them.

    Any thoughts about this? I would appreciate. Thank you.

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    Old 06-03-2011, 07:42 AM   #2
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    Re: I could use some constructive feedback

    Well, my friend, mpther had polio when she was 3 months old and is now 87. I've learned a lot about pps and don't claim to be an expert but it sure sounds like you have pps. I've beeen dealing with mom and her pps for years. We have gone the chiropractor route. She went once a month for years and years and it seemed to help her. She is still going on occassion when her back is giving her fits. She ended up with a curviature of the spine and her hips are uneven.

    I guestion the physical therapy and I say that because mother is on her 3rd go round with pt and it just does not work. They just simply can not rehab muscles that are overworked and worn out. Polio patients muscles work twice as hard as non-polio people to do the same action. Physical Therapy is just to tiring for post polio people.

    Mother was prescribed a type of brace, made of some kind of plactic that goes under her foot/feet and behind her calf from her toes to the knee to help support the foot. Sounds like you have foot drop--common with pps people. The brace helped her for many years, but time has taken its' toll on her very overused muscles and she is not wearing them anymore due to the weight of the sneakers she has to wear with them.

    The best advice we have been able to find is to rest often, try not to get to heavy, eat lots of protein. PPS people require extra/more protein than the norm.

    Mom's legs have been suddenly giving out on her all her life. Just happens--no reason or action seems to be related to it. See, kids with polio--the younger they are, the more their body can adapt--learn to walk and use muscle differently than other children their age. Good muscles took over for bad muscles and did things they were not designed to do, consequently, those muscles wear out faster.

    I hope this info has been helpful. I will be glad to answer any other question you may have, if I can!

    Old 07-13-2011, 05:45 PM   #3
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    Re: I could use some constructive feedback

    What I was told by my orthotist, from whom I have found out much more information than from any orthopedist, that when we hit 40, we start losing muscle mass. People who have had polio, don't have that many muscles to lose as the normal population. Therefore, it makes more of an impact. With that in mind, since you didn't wear a brace for most of your adult life and got along fine, it might be time to think of one. They have all kind of trick ones now compared to what they had even ten years ago. That is one thing positive that has come out of the recent wars. During the Viet Nam war, they had land mines. They would blow off soldiers legs and other lower body parts that they hold most dear. Now, they have these cute mines that fly up in the air and cause brain damage. Consequently, they made great strides in prostheses during the Viet Nam war. Now, they are making great strides in orthotics. If you want to check them out before you take the plunge, get your hands on a copy of O & P magazine. They will send them to you for free. I think they are also online. Check out that major brace manufacturers. You would probably do fine with a plastic one that goes inside your shoe. It would help the muscles you have get no so fatigued. Resting is good but don't rest too much or you will start that downward spiral. Do you like to swim? Probably not, but do it anyway.

    Old 07-13-2011, 07:39 PM   #4
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    Re: I could use some constructive feedback

    I have read about something called post-polio syndrome, where disabilities strike many, many years (or decades) after polio.
    It supposedly affects 25-50% of polio survivors.
    I think this syndrome has just been discovered in the past decade or so.
    You might do some research on it.

    Best of luck!

    Old 07-19-2011, 02:18 PM   #5
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    Re: I could use some constructive feedback

    You mentioned that the weight of your Mother's sneakers gave her a problem due to their weight. We found some very light weight sneakers, and some lightweight loafers that my husband's braces fit into, and they have worked out much better. And we found them both at discount stores, so a bargain too. Hope this helps. It is great that your Mom is 87 and still fighting PPS.

    Old 07-19-2011, 03:56 PM   #6
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    Re: I could use some constructive feedback

    My husband was told by his neuromyologist that many people who have polio as a child, have a certain level of disability, go on with their lives, then anywhere from 20-40 years later, they start getting weak, in all their muscles. The muscles that were originally injured by Polio already have their deficits, then the muscles that have been doing all the work start to give out, causing the whole body weakness that my husband is experiencing. He had polio at 18 months, had extensive therapy as a child, then pushed his entire life, no braces, no canes, exercise, etc. Then, when he was in his mid 50's, he started to get tired and weak. He had a blood test(CPK) that showed an increase in the number of injured muscle tissue, they thoguht he was having a heart attack, when that was ruled out, they took a long time to diagnosis-incorrectly, Polymyositis. A routine of cortisone was begun, no benefit. Then very intense PT was begun. An ortho appt showed that he had loss of muscle tissue in his thumb area-that led to us going to neurologists, then a neurologist who specialized in muscle problems. He said he thought the wrong diagnosis was being used, he did an EMG which showed extensive muscle atrophy, and that sealed the diagnosis. My husband was told to immediately stop all exercise, and if he was able, to do light stretching exercises only.
    The best advice he was given: consider that when you wake up, you have a shoebox full of energy, when it is gone, it is gone for the day. Use your energy slowly, pace yourself and rest-laying down often. If you do too much one day, you may not be able to do anything much for the next few days, so try not to do many activities in one day.
    If you have PPS, PT actually is the worse thing that you could do my husband was told.
    I hope this helps with your diagnosis and treatment.

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