Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 Beautiful poem Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 Beata, You would rather use a walker and hardly walk and struggle, than use a WC?, not me! Why wear yourself out, trying to walk!! What would you do after you lost your upper body strength? You have to be joking....right? Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2009 Report Share Posted August 21, 2009 Hi Geri, I am a hopeless struggler. I like it when it is hard. It must be my personality. If I had been a person without CMT, I would probably be a Mount Everest climber. With CMT ordinary walking is almost like a Mount Everest climb, though. (But much cheaper.) I don't know anything about using a wheelchair. If you don't need it (yet), it is kind of hard to imagine that you can accept and like it. So sorry, I am probably just ignorant because I don't have the experience (yet). I saw this man struggle with his walker,and my brain said: Cool, an alternative to a wheelchair! But maybe it is not. I could be too weak, to do it like him. Or I would realize that it takes to much effort. I am also against a wheelchair because of something that happened when I was 7. I went to a doctor with my parents and he said that I would be in a wheelchair when I was 15. My mother started to cry. I can remember this clearly. No child want their parents to cry, and especially not for something they can't do anything about. But I decided that I would NOT be in a wheelchair. Ok, the doctor was wrong. I am 38 and still able to walk. Malls and fairs are no problem, I go everywhere. But it could be because I have always been exercising a lot, swimming, biking. Still do. Maybe I did this because of what the doctor said, and it actually helped. Or maybe he was just way off track. Anyway, I have this image in my head: wheelchair = my mother is sad. So I will probably avoid a wheelchair as long as possible. I hope that they will invent something cooler than a wheelchair by the time I will need it. An electric scooter looks so much better. The Segway is cool too, and I tried it and could use it. Or robot legs. I feel aids should look cool. They should look like something a healthy person could envy and want to use. The wheelchair is not like that. But an electric scooter? Yeah, someone healthy might think: " Wow, wish I had a scooter like that! Carrying my groceries a mile is killing me! " But would they think so about a wheelchair? Beata Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2009 Report Share Posted August 21, 2009 Beata, Why do you care so much of what others think? Geri I am a hopeless struggler. I like it when it is hard. It must be my personality. If I had been a person without CMT, I would probably be a Mount Everest climber. With CMT ordinary walking is almost like a Mount Everest climb, though. (But much cheaper.) I don't know anything about using a wheelchair. If you don't need it (yet), it is kind of hard to imagine that you can accept and like it. So sorry, I am probably just ignorant because I don't have the experience (yet). I saw this man struggle with his walker,and my brain said: Cool, an alternative to a wheelchair! But maybe it is not. I could be too weak, to do it like him. Or I would realize that it takes to much effort. I am also against a wheelchair because of something that happened when I was 7. I went to a doctor with my parents and he said that I would be in a wheelchair when I was 15. My mother started to cry. I can remember this clearly. No child want their parents to cry, and especially not for something they can't do anything about. But I decided that I would NOT be in a wheelchair. Ok, the doctor was wrong. I am 38 and still able to walk. Malls and fairs are no problem, I go everywhere. But it could be because I have always been exercising a lot, swimming, biking. Still do. Maybe I did this because of what the doctor said, and it actually helped. Or maybe he was just way off track. Anyway, I have this image in my head: wheelchair = my mother is sad. So I will probably avoid a wheelchair as long as possible. I hope that they will invent something cooler than a wheelchair by the time I will need it. An electric scooter looks so much better. The Segway is cool too, and I tried it and could use it. Or robot legs. I feel aids should look cool. They should look like something a healthy person could envy and want to use. The wheelchair is not like that. But an electric scooter? Yeah, someone healthy might think: " Wow, wish I had a scooter like that! Carrying my groceries a mile is killing me! " But would they think so about a wheelchair? Beata Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2009 Report Share Posted August 22, 2009 I was once told I was lucky to be in a wc, so I didn't have to walk. I was also told I was too pretty to be in a wc I 've also been asked if I give rides....... Ya! Push my buttons!...... Geri > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2009 Report Share Posted August 23, 2009 This topic is close to my heart. My CMT is more severe than most.For the last 6 years totally fought even purchasing a chair. I bought a Segway and used that for a few years. Needed help on and off but it did the job if you could stand for long periods of time. Then I was unable to get on it. Still fighting and in denial I refused the chair. Used a 4 wheel walker. Then finally 6 months ago I was unable to stand anymore. Reality finally hit. I didnt even realize I was unable to leave the house unassisted for the last 3 years. Now all of a sudden I could not even pick up my kids from school if they were sick. Thank god I have a great supportive family. Well this summer I liberated myself. I purchased a ramp van and installed hand controls. Got my trusty powerchair. I can do about anything. I am so mad at myself that I let it go for that long due to my stubborness.I am so excited for school to start again so I can volunteer in my daughters 3rd grade class. I havent been able to volunteer since she was in kindegarten:( My best advice on a wheelchair, is once you are not doing things because you cant walk that far or it is to difficult, it is time to get liberated. It isnt as bad as I thought. Mike the lurker (via bend ,oregon) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2009 Report Share Posted August 23, 2009 Hi Beata, Thank you for the suggestion of using plastic booties over my shoes. That's an excellent idea. Many people who are selling their homes have a basket of these at the front door to keep their carpet clean. I'll get some! They weigh less than socks too! Thanks. As for the wheelchair discussion, I can relate to what you are saying. To me, this isn't an issue of being concerned about what other people think. It's an emotional issue of dealing with a progressive disease, which includes repeated episodes of grieving and acceptance, as well as dealing with emotional sensitivities we've developed throughout our lives. I too have an aversion to being " confined " to a wheelchair. I use a scooter now when I'm out and find it very liberating, as some have mentioned. I'm considering getting a wheelchair, since it can get into tighter places more easily. However, I see using a wheelchair in this capacity, to increase mobility and preserve my energy, as something completely different than being confined to it. It seems that most CMT patients who use a chair are still able to get up and walk a little. In my opinion, that's not confinement. To me, confinement means complete inability to use my legs to walk, which would require assistance getting out of the chair, using the toilet, bathing, getting into bed, getting dressed, etc. Typically, when a person gets to this point, they need assistance with many activities of daily living. That's what " confined to a wheelchair " means to me and I hope I never get to that point. Dealing with that type of situation would be tough emotionally, not because I care what people think, but because I can't stand the thought of being incapacitated to that degree and having to rely on others so much. I've watched others lose their abilities and this type of loss of independence is rough. I agree with you that there is less stigma with using a scooter vs using a chair, since people do associate a wheelchair with a greater level of disability. Perhaps we carry that stigma in our own minds too. Not that we are worried about what people think, but that it might represent a greater level of disability in our own minds, which might require some time to sort out. In my experience, loss of mobility is an emotionally painful process. When someone is fearful of losing mobility or is grieving the loss of mobility, sympathy and understanding from friends eases the pain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2009 Report Share Posted August 23, 2009 Mike, I totally agree with you, I avoided a chair for so long which limited my life, I didnt go or do anything, fair enough I was eventually forced in a chair, but my life now is so richer.? I am doing things I would never have dreamt of before, next month I am going canoeing!? Life is for living. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2009 Report Share Posted August 23, 2009 I am 'confined' to a wheelchair now, having lost my right lg and my left leg is too weak to do anything.? However I do not need help doing anything!? You adapt, I still have my arms, hands are weak but my upper arms are good, there are many things I struggle with but it makes me think " so how can I do this? " ? I do try and think where there is a weakness there is a strength.? Love to all. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2009 Report Share Posted August 23, 2009 Hi Jill, Thank you very much for your post. You bring up exactly the point that helps me. My fear does assume that my arms will be too weak when my legs are too weak. Like you, my hands are weak, but I still have decent upper arm strength. It's encouraging to know you are working it out even with weak hands. Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 Hi Geri, I care of what others think because I am social being. I am not an island. I interract with people. Their thoughts and comments is my guideline. If someone says that I was doing well climbing that steep hill (as I did yesterday) then I get a positive boost. If they say poor you, you can't do that... I get a negative feeling. What others think and say is important to me. It would be great to feel that no matter what others think or say, I am good enough anyway. But for me, it would mean that the positive feedack looses its worth too. (In case someone thinks or says something bad, and I don't care, then why should I care if they say something nice?) Beata From: Geri Logan <hotwheels@...> Sent: Friday, August 21, 2009 8:32:58 PM Subject: Re: wheelchair Beata, Why do you care so much of what others think? Geri I am a hopeless struggler. I like it when it is hard. It must be my personality. If I had been a person without CMT, I would probably be a Mount Everest climber. With CMT ordinary walking is almost like a Mount Everest climb, though. (But much cheaper.) I don't know anything about using a wheelchair. If you don't need it (yet), it is kind of hard to imagine that you can accept and like it. So sorry, I am probably just ignorant because I don't have the experience (yet). I saw this man struggle with his walker,and my brain said: Cool, an alternative to a wheelchair! But maybe it is not. I could be too weak, to do it like him. Or I would realize that it takes to much effort. I am also against a wheelchair because of something that happened when I was 7. I went to a doctor with my parents and he said that I would be in a wheelchair when I was 15. My mother started to cry. I can remember this clearly. No child want their parents to cry, and especially not for something they can't do anything about. But I decided that I would NOT be in a wheelchair. Ok, the doctor was wrong. I am 38 and still able to walk. Malls and fairs are no problem, I go everywhere. But it could be because I have always been exercising a lot, swimming, biking. Still do. Maybe I did this because of what the doctor said, and it actually helped. Or maybe he was just way off track. Anyway, I have this image in my head: wheelchair = my mother is sad. So I will probably avoid a wheelchair as long as possible. I hope that they will invent something cooler than a wheelchair by the time I will need it. An electric scooter looks so much better. The Segway is cool too, and I tried it and could use it. Or robot legs. I feel aids should look cool. They should look like something a healthy person could envy and want to use. The wheelchair is not like that. But an electric scooter? Yeah, someone healthy might think: " Wow, wish I had a scooter like that! Carrying my groceries a mile is killing me! " But would they think so about a wheelchair? Beata Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 Hi , You said it a lot better than me! ) Beata ________________________________ From: <agraham2k@...> Sent: Sunday, August 23, 2009 2:00:35 AM Subject: Re: wheelchair Hi Beata, Thank you for the suggestion of using plastic booties over my shoes. That's an excellent idea. Many people who are selling their homes have a basket of these at the front door to keep their carpet clean. I'll get some! They weigh less than socks too! Thanks. As for the wheelchair discussion, I can relate to what you are saying. To me, this isn't an issue of being concerned about what other people think. It's an emotional issue of dealing with a progressive disease, which includes repeated episodes of grieving and acceptance, as well as dealing with emotional sensitivities we've developed throughout our lives. I too have an aversion to being " confined " to a wheelchair. I use a scooter now when I'm out and find it very liberating, as some have mentioned. I' m considering getting a wheelchair, since it can get into tighter places more easily. However, I see using a wheelchair in this capacity, to increase mobility and preserve my energy, as something completely different than being confined to it. It seems that most CMT patients who use a chair are still able to get up and walk a little. In my opinion, that's not confinement. To me, confinement means complete inability to use my legs to walk, which would require assistance getting out of the chair, using the toilet, bathing, getting into bed, getting dressed, etc. Typically, when a person gets to this point, they need assistance with many activities of daily living. That's what " confined to a wheelchair " means to me and I hope I never get to that point. Dealing with that type of situation would be tough emotionally, not because I care what people think, but because I can't stand the thought of being incapacitate d to that degree and having to rely on others so much. I've watched others lose their abilities and this type of loss of independence is rough. I agree with you that there is less stigma with using a scooter vs using a chair, since people do associate a wheelchair with a greater level of disability. Perhaps we carry that stigma in our own minds too. Not that we are worried about what people think, but that it might represent a greater level of disability in our own minds, which might require some time to sort out. In my experience, loss of mobility is an emotionally painful process. When someone is fearful of losing mobility or is grieving the loss of mobility, sympathy and understanding from friends eases the pain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2009 Report Share Posted August 25, 2009 That's funny, Beata. I thought the same thing about you when I read your email! From: Beata Boo <beataboo@...> Subject: Re: wheelchair Date: Monday, August 24, 2009, 1:47 AM Hi , You said it a lot better than me! ) Beata ____________ _________ _________ __ From: <agraham2k (DOT) com> groups (DOT) com Sent: Sunday, August 23, 2009 2:00:35 AM Subject: Re: wheelchair Hi Beata, Thank you for the suggestion of using plastic booties over my shoes. That's an excellent idea. Many people who are selling their homes have a basket of these at the front door to keep their carpet clean. I'll get some! They weigh less than socks too! Thanks. As for the wheelchair discussion, I can relate to what you are saying. To me, this isn't an issue of being concerned about what other people think. It's an emotional issue of dealing with a progressive disease, which includes repeated episodes of grieving and acceptance, as well as dealing with emotional sensitivities we've developed throughout our lives. I too have an aversion to being " confined " to a wheelchair. I use a scooter now when I'm out and find it very liberating, as some have mentioned. I' m considering getting a wheelchair, since it can get into tighter places more easily. However, I see using a wheelchair in this capacity, to increase mobility and preserve my energy, as something completely different than being confined to it. It seems that most CMT patients who use a chair are still able to get up and walk a little. In my opinion, that's not confinement. To me, confinement means complete inability to use my legs to walk, which would require assistance getting out of the chair, using the toilet, bathing, getting into bed, getting dressed, etc. Typically, when a person gets to this point, they need assistance with many activities of daily living. That's what " confined to a wheelchair " means to me and I hope I never get to that point. Dealing with that type of situation would be tough emotionally, not because I care what people think, but because I can't stand the thought of being incapacitate d to that degree and having to rely on others so much. I've watched others lose their abilities and this type of loss of independence is rough. I agree with you that there is less stigma with using a scooter vs using a chair, since people do associate a wheelchair with a greater level of disability. Perhaps we carry that stigma in our own minds too. Not that we are worried about what people think, but that it might represent a greater level of disability in our own minds, which might require some time to sort out. In my experience, loss of mobility is an emotionally painful process. When someone is fearful of losing mobility or is grieving the loss of mobility, sympathy and understanding from friends eases the pain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 I just wanted to post an update on my quest to get a wheelchair. I got a prescription and the pt does not think I should have any trouble getting the insurance company to pay for the chair. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 Good for you is it - Electric Wheelchair? Geri I just wanted to post an update on my quest to get a wheelchair. I got a prescription and the pt does not think I should have any trouble getting the insurance company to pay for the chair. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 No. I did not want an electric. I want to get some exercise pushing myself and also be able to easily fold it up and put it in the car. > > Good for you is it - Electric Wheelchair? > > Geri > > > > > > > > I just wanted to post an update on my quest to get a wheelchair. I got a prescription and the pt does not think I should have any trouble getting the insurance company to pay for the chair. > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.