Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 Kim For me, I started using the store scooters and then got my first scooter when I could no longer do my grocery shopping once a week due to pain and cramping. I then realized that I had gradually been eliminating activities requiring walking or standing without even knowing the reason. Getting my first scooter was like getting my life back. I still walk as much as I can to hopefully be able to maintain strength as long as I can. I hope others answer, since I am sure others did it differently. laurie > > > I have a question. It appears that many of you are in wheel > chairs. Can you please tell me your experience of how long it took > between starting to see weakness, and needing a wheel chair. > I started noticing visable muscle size reduction two years ago, and > get noticably weaker each year. I've just found a handicap > accessable house I'm considering moving to before I'm weaker, and > might need to consider a wheel chair. > This information might help others on the list too. So the more of > you that respond the better idea we'll have of an average time > frame. I think planning ahead helps to keep independence too. > Thank you for your help. > Kim > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 Kim For me, I started using the store scooters and then got my first scooter when I could no longer do my grocery shopping once a week due to pain and cramping. I then realized that I had gradually been eliminating activities requiring walking or standing without even knowing the reason. Getting my first scooter was like getting my life back. I still walk as much as I can to hopefully be able to maintain strength as long as I can. I hope others answer, since I am sure others did it differently. laurie > > > I have a question. It appears that many of you are in wheel > chairs. Can you please tell me your experience of how long it took > between starting to see weakness, and needing a wheel chair. > I started noticing visable muscle size reduction two years ago, and > get noticably weaker each year. I've just found a handicap > accessable house I'm considering moving to before I'm weaker, and > might need to consider a wheel chair. > This information might help others on the list too. So the more of > you that respond the better idea we'll have of an average time > frame. I think planning ahead helps to keep independence too. > Thank you for your help. > Kim > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 A friend of mine has a skooter to use when she is out of the house and has to do a lot of walking. Her husband is now ill and has been for several months (he made me use one of those motorized shopping carts once when he had taken me to the drugstore, WOW). At any rate, there was a time when he needed a prescription picked up right away and out of her four children living in Topeka (or grandchileren) to get it for her but her nine year great-grandson was at their house, so she had him go out and get her skooter unpluged for her and they took off on the skooter (he went in and got the cellphone in case of an emerency) and went seven blocks to Walgreens, he went in for her to take her check in and get the prescription for her but when he came back the pharmicist was with him. He was dumbfounded and said that maybe he should take them home, she told him that they got there OK and they could get home OK. When her husband woke up he wasn't really a happy camper about it, the worst came when my ex-daughter-in-law (their daughter) found out about it and in turn called and told our Grandson Jeff about it. He was " livid " , he always wants to be sure he takes care of everyone and he spreads himself too thin as he now has three daughters, the yougest (Breanna) is only six weeks old. At any rate those skooters appear to be a great idea, my Aunt recently got a Hover-round and she is having problems learning how to take the corners, she said that the piano can just stand so many hits. I hope she learns to use it OK as she has taken several bad falls, (including a badly broke ankle and she has broken he pelvis twice) all this while she has been trying to recuperate from a stroke and carotid atery surgery. Thank the good Lord my Uncle is still living or she would be in a real mess!! Laurie Fitzgerald laurie.fitzgerald@...> wrote: Kim For me, I started using the store scooters and then got my first scooter when I could no longer do my grocery shopping once a week due to pain and cramping. I then realized that I had gradually been eliminating activities requiring walking or standing without even knowing the reason. Getting my first scooter was like getting my life back. I still walk as much as I can to hopefully be able to maintain strength as long as I can. I hope others answer, since I am sure others did it differently. laurie > > > I have a question. It appears that many of you are in wheel > chairs. Can you please tell me your experience of how long it took > between starting to see weakness, and needing a wheel chair. > I started noticing visable muscle size reduction two years ago, and > get noticably weaker each year. I've just found a handicap > accessable house I'm considering moving to before I'm weaker, and > might need to consider a wheel chair. > This information might help others on the list too. So the more of > you that respond the better idea we'll have of an average time > frame. I think planning ahead helps to keep independence too. > Thank you for your help. > Kim > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 RH I have been using a scooter or power wheelchair outside the home for about 12 years and still walk at home. I will walk into a restaurant with my crutch if I can park right outside. My goal for the summer is to walk to get my mail at the end of my driveway, using my walker. laurie > > > I don't think there's a general rule on life expectancy in mito > diseases. I remember one of the first stories I read about a MELAS > patient (when they first told me I appear to have MELAS) - she died > within 3 years of diagnosis. I've been ill for over 10 years, and I > had some of my most severe symptoms within the first three months > after I first noticed any symptoms (first symptom was double vision > in my case). Within those three months, I was blacking out > regularly, couldn't keep my head up after driving 10 minutes to work, > and was basically being told that I was either making up symptoms or > had a brain tumor. Six years later I found a doctor who knew it > could be mito disease. My daily symptoms now are mild enough that > most people don't know I'm ill, since they aren't at my house > watching me crawl up the stairs or have a stroke-like episode. > > Me and my husband had been married about 4-1/2 years when I got > sick. He just seems to accept it, and takes care of me when I need > it, like when either I had to quit work or have him drive me to work - > he drove me to work every day even though it was 90 minutes out of > the way. > > Weakness affects my daily life, but I don't feel weakness in itself > is a " risk factor " for shortened life span. I think even if one > doesn't have heart, kidney, or liver symptoms, getting to a > cardiologist and a GI specialist is an important way to " check " on > the status of long-term concerns. Unfortunately, I think most of us, > like people with other chronic illnesses, are at risk from other > illnesses or stresses causing a crisis. > > Would you date more or less if you knew you had a decreased life > expectancy? I might date more, that is, if I was in the dating > pool...Also, how would you feel about dating someone with a shorter > life expectancy, would it matter to you? > > P.S. How old is too old to date > > Take care, > RH > > > > > > > > > > > > > > > I have a question. It appears that many of you are in wheel > > > > chairs. Can you please tell me your experience of how long it > > took > > > > between starting to see weakness, and needing a wheel chair. > > > > I started noticing visable muscle size reduction two years ago, > > and > > > > get noticably weaker each year. I've just found a handicap > > > > accessable house I'm considering moving to before I'm weaker, > > and > > > > might need to consider a wheel chair. > > > > This information might help others on the list too. So the > more > > of > > > > you that respond the better idea we'll have of an average time > > > > frame. I think planning ahead helps to keep independence too. > > > > Thank you for your help. > > > > Kim > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements > > contained herein > > > > are not necessarily those of the list moderators. The author of > > this e mail > > > > is entirely responsible for its content. List members are > > reminded of their > > > > responsibility to evaluate the content of the postings and > > consult with > > > > their physicians regarding changes in their own treatment. > > > > > > > > Personal attacks are not permitted on the list and anyone who > > sends one is > > > > automatically moderated or removed depending on the severity of > > the attack. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2005 Report Share Posted March 19, 2005 Hand rails were one of the first things we did many years ago. But we kept them decorative rather than industrial-looking. I like a house to look like a home and not a hospital. Good for the morale and also helps visitors treat me like everyone else and not a 'sick person.' The messages are subtle but definitely there. Barbara _____ From: ohgminion Sent: Friday, March 18, 2005 6:43 PM To: Subject: Re: ideas / ? * Has anyone put in handrails in their house? I think I might at some point, at least in the main upstairs hallway. I grab the wall a lot when I walk, or use furniture to support me if available (sort of going from island to island) when I'm out, and it really depends on the situation whether I get fatigued easily or not. Take care, RH .. Quote Link to comment Share on other sites More sharing options...
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