Last post Sat, Sep 06 2008 9:40 AM by darylynn. 73 replies.
Hi Countnnita I think most of us with bad mobility are over wheight. Here is what I do I stay away from eating zones kitchen I try to spind my day out side and out of the house dureing the day.I traded cookies cakes and candy for fruit Dr. Pepper for fruit drinks and tea I cant walk but I tought my self how to get in and out of a kayak. I thaught about getting a hand bike. if the lower part dont work work the top slowly though never over do it if you have polio thats a lot of pps overuse of you good side I call mine the good side and bad side too. lol so girl put the phone down and get your ^%^^ up. good luck
Hey Billy, great post. I had polio 50 years ago and I can relate to everything you say. We can either suck it up and get on with life or not. I'm glad you found such a nice place to live and a job.
I just joined the site today,I contracted polio from the oral vaccination at nine months of age. I am now experincing the first signs of pps.I have walked with the aide of crutches all my life and worked very hard to be the best at everything I do, I was so deteremined to be "able" and was quite sucessful at it but, now that I am getting older (40) and the pps has kicked in this has become increasingly difficult.I am glad I found a place that I can communicate with people that are going through the same things I am. I am from a rural community with few doctors none of which are familar with pps can anyone help me with this? I look forward to making new friends here ,I would love 2 be involved in a support group if one is formed.
hi KiKi well you sound like the most of us with polio. work hard the early years of our life and lose the things we worked for around 40. The bad thing about it there arnt any nonproffits that help polio surviver's. the most of use would be happy if we could get wheelchairs and braces or meds payed for.If my chair brakes I have to try and find funding for repair's and then find a repair place that has a loner I cant walk at all and with only the use of one arm I need a power chair.There is a lot of work to being disabled. Thats why its hard to have a full time job.we have a full time job taking care of ourselves.I hate to sound so neg. but the other parts of my life make me happy and that makes life easyer for me. Hey day by day. billysais hang in there
Hi Al that was very good I didnt know what was going on with me at all , I thought I would be up and going all my life . but after loseing everything and even my ability to walk I got a computer and started to look in to pps You al went in to ita lot deeper than I did thats good because we can learn from each other. I have very little pain since I went in to wheelchair. I think a lot of my pain was artharitis or over use of my left arm. I used it to get into a standing position all my life . and as most I was over weight 5'11'' 170 now 225 .I try to keep from getting bigger but with little money a month and big expence for chair and other things , its hard to buy healthy food. Check this out I went to my new DR.I seen her for the first time last year for an ear infection , the other day and my wieght problem came up I told her I try to go and be busy most of the day . She thinks I should try to walk again becouse if I don't use it I will lose it . I about fliped then I had to remember she dosen't really know about pps maybe polio but not pps. its a lot differrent physicly and mentaly. Yes I to think that a range of motion massage would feel great but how does a single guy pay for that. I try to never make myself real tired and I don't work myself but three or four day's then I rest and lounge for a day. If I don't get those down day's it gets built up then I go down for two or three day's and very tired I don't want to move. So I watch what I do hey Al I just seen your message thought I would give you athumbs up
Hi Jazz my opinion on why there are so few Dr. who know about polio. There is no money in it . our medicare and medicade doesn't pay much and there are no telathons for polio.Easterseals,March of dimes and the others pay CEO's millions while we suffer along I have asked for help in the past 18 years and I have got none I was sent a bill by easterseals once becaous my chair broke at a mall near easterseals office in EVANSVILLE IND. my home town I was given the repairs of the tire but got a bill four days later for $65.00 So we get by the best we can with old wheelchairs ill fitting braces on very little money.and if we do get any money a head it goes to pay old repair bills so you can get repairs later on down the road.I think Shriners owes me money for leting students explore on my good leg . that's why I cant walk I have fifteen scar's on my leg that was not effected by polio . non on my polio leg. I do have post polio at this time but if it wasen't for the surgeries on my leg when I was around 10 to 14 years old. after that I said no more and the Shriners discarged me at 15 and has not help at all. And NO I did not pay the $65.00 to Easterseals I called and asked if they could please take me to court I would like to get the non roffits exposed but we don't have a voice. In my hone town the eastersealsis ran by the editore of the local paper and a few banks have member on the board of directores and a judge or two so you see they have the bases covered. Almost all the big nonproffits came from the 50's with polio, then when the epidemic was stop "we still don't have a cure for polio" the non proffits seen what it would cost to take care of polio survivers and most whent to another illness . and left us not knowing what we was to do the rest of our life. I tell everyone not to give to those nonproffits find a person with a disability and help them the disabled person will tell you they don't need anything. but look at there tires or ask where they get there wheelchair battery's a grocery gift card. Some folks dont like just handing money to someone. You never know if they will use the money for a time out day like a move and a big mac.
Hi HandiMan Al, How are you doing? I got polio in 1949 and was diagnosed with post-polio syndrome in 1989. I just received information about disaboom today. I would like to meet others who also have post-polio syndrome. I hope to be able to chat with you sometime.
Hi there, another surviver of Polio, caught it in 1958 in Italy, caught it severely but somehow I learned how to walk with calipers, and become very independent......but nowwwwwww its coming back and I am so scared, please can someone help me to releive this anxiety I feel right now:))) Its great to see that I am not the only one, and its amazing that there is a place such as this where I can express my fears freely:)) Scared Lilla xoxox
Hi, Lilla. I know how you feel and in this case, a little knowledge helps with the fear part. First off, the Polio is not coming back. The Polio virus severely damaged or destroyed many of our motor nerves. After the virus was successfully destroyed, we then spent the next years rebuilding some of the damaged nerves and thus we were able to recover some of the use of our muscles. But the rebuilt nerves were not exactly like the nerves that were lost. Many of us were able to relearn how to walk, often with braces and crutches (as in my case), but gradually, after about 30-40 years later, we began to notice the gradual deteriotation of our joints and muscles. This is the beginning of PPS. It is not Polio, and it is not a disease, therefore there are no magic drugs or therapy that will restore us to our previous state.
The sometimes overwhelming fatigue, usually accompanied by some degree of pain, is how your body is telling you that it is time to rest. If we continue to push our muscles past this point, then there can be significant worsening of the problem. The only effective thing we can do is to learn to not push oursleves to the limit and take frequent rest breaks. When you begin to feel tired, you have to stop or you will further damage your overworked muscles/nerves. It is also important that you make sure you eat high protein low fat meals, especially at breakfast. Doing these things will go a long way toward helping relieve some of the pain and will slow down the effects of PPS.
There are many other ways that PPS affects us. Some of these are a loss of ability to concentrate and memory problems resulting from disrupted sleep patterns. I suggest you study some of the very good material on the subject (some of which I have referenced in prior postings) because the more you can learn to conserve your strength, the less pain and anxiety you will experience. I hope this helps and I am sure others can add a lot to what I have said here. Take care.
i am a polio survivor, it affects my left leg, when i was about 2 yrs old. sometimes life is not easy easy i come from phils, with many discriminations if you have a disability. but i tried my best. im here, to talk to and share my life, and be friends with people like me.
Hi , i am Rainey iam 56 years of age and i was stricken with polio a week before my third birthday........after 9 operations and many hours of rehab i was able to walk with the aid of a long leg brave and crutches ..... two years ago i lost my mobility to walk and now live in a chair. I am having a very hard time adjusting ,PPS hit me hard and fast, I feel so defeated, here i was believing i had polio under my control and the years later it had regained the control .I would love to chat with anyone with polio and see if were having the same changes in our lifes ............. rainey
We spoke shortly after my hubby found the website for me. At that time, I was very shy to share all of my symptoms/conditions with anyone. It is getting a little better. I have been in my powerchair for 8 months, but that just hasn't been really long enough for me to adapt. I have an autoimmune problem that will not let me be well for longer than a New York minute, so I am housebound the majority of the time. I had polio in 1956, diagnosed with PPS late 70's, early 80's. At 61, am working on regrouping my life so that I also have things to do, not just my hubby.
My e-mail address is: sandee3535@aol.com
SanDee LaBonte'
My father-in-law contracted polio in 1925, as an infant. He spent the majority of his first two years of life at the University of Michigan Hospital. He was given the Nurse Kenny method. He is still alive and will be 83 this August. He has had a limp all of his life, but it never stopped him. He played baseball, basketball, worked in an underground iron ore mine for a few years and then went to college and got his teaching degree. He got his master's degree from the U of M and eventually became superintendent of his high school alma mater. He has been fortunate enough to never get PPS.
Becky
Hay, I got Polio in 1950,, 11 months old. very light case I guess, don't think would have survived with full case. Have Post Polio Syndrome now. Finally ,this year,was officially decided that I am disabled. Have been unemployed since Jan of this year, am looking for something can do from home for income. Has anyone found real employment on the web?
my question is why did the March of Dimes change their focus? The group was formed to help Polio victims and now they are concerned about babies. Is there another group that is trying to work toward everyday needs of Polio survivors? the Post Polio syndrom groups I have contacted have some medical information about what PPS is but not much about everyday things. Any direction to useful sites would be appreciated.
