Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 Thank you laurie. I've already eliminated a lot of walking and standing. Groceries is a big enough deal for me, that I have to rest up for a day afterwards. I don't get a lot of pain. I just get weaker the more I do, and I get shakey. From that description do you think I'm getting close? Thanks, Kim PS. On another front, if people wouldn't mind talking about it, how long of a life expectancy is there once the weakness is effecting daily life. I'm sorry to ask, but I'm young enough to date, and hate to date without this information. Thank you for considering talking about such a difficult topic. > > > > > > 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 Thank you laurie. I've already eliminated a lot of walking and standing. Groceries is a big enough deal for me, that I have to rest up for a day afterwards. I don't get a lot of pain. I just get weaker the more I do, and I get shakey. From that description do you think I'm getting close? Thanks, Kim PS. On another front, if people wouldn't mind talking about it, how long of a life expectancy is there once the weakness is effecting daily life. I'm sorry to ask, but I'm young enough to date, and hate to date without this information. Thank you for considering talking about such a difficult topic. > > > > > > 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 That sounds like something I'd do. Right now I'd walk it even if I was messed up for a few days. When something needs to be done...do it. Probably not the best personality for these diseases. Most scooters/wheelchairs don't have head rests do they? My neck gets so bad. I have to rest it alot, or it cramps up. Kim > > > > > > 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 That sounds like something I'd do. Right now I'd walk it even if I was messed up for a few days. When something needs to be done...do it. Probably not the best personality for these diseases. Most scooters/wheelchairs don't have head rests do they? My neck gets so bad. I have to rest it alot, or it cramps up. Kim > > > > > > 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, your question has had me thinking all morning.( you will have to translate my English speak here ).. I use a lightweight sports manual wheelchair full-time..never used a scooter..I can propel myself with no problem around supermarkets and shopping centres..if we go for a walk in the country or to say the county showground or round heritage sites my husband or son will help me out and push when necessary, getting up and down our high street is difficult alone because of the gradient..come back to add I can't do it:( This is where mito affects us all so differently..my skelatal muscles are still okay no loss of mass etc..its my brain heart and kidneys that are messed up plus problem with signals in spinal cord means I have the tibial nerves affected..simple language means from the knees down my legs are mucked up in the extreme..thats polite language I first used a wheelchair about 8 years ago in Airports particularly Heathrow as it is miles to walk and I kept tripping up and got out of breath...about 3 years ago I fell once too often right in front of the social worker who was here on a visit whilst trying to carry a cup of coffee and walking with a stick..I hit my head on the fireplace as I went down, cut myself badly as the cup broke as well..that is when I knew the situation had to change and I had to accept that this was becoming dangerous..I had fought against everyone and myself for a while about it..but agreed to use wheelchair indoors on bad days ...now everyday..advantage of manual wheelchair is that you don't lose as much strenght... We wish now that we had moved to a bungalow then as life would maybe easier instead of being in a house..but finance now makes it impossible.. I have a walking frame i am supposed to try to walk with but it is not stable enough..makes a great thing to hang wet jeans on to dry though LOL.. Now my movement abilities are such that WHEN my circulation heart/kidneys etc are working properly I can still walk around with a stick, love trying to stand and stretch and can still squat down and use thigh muscles to push myself up BUT can't keep shoes on my feet they drop of due to loss of feeling but still keep hoping the Cardiologist and urologist can sort some of this out soon.. Kim, you say you want to date because you are young...go for it girl enjoy life, live life to the full...I am 50 now but I have some wonderful memories so when I get down compared with most I have had a most wonderful life, lived overseas, travelled and had FUN...but maybe think through the longterm accomodation aspect...ROFL can tell you some wonderful marble floored shopping malls in the Middle East to race wheelchairs down with disabled loos with goldplated disabled fixtures and fittings.. Gillian > > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 Gillian, I like your sense of humor. I don't ever want to loose mine either. You're right it does effect different people differently. I'm surprised how much smaller my arms and legs are. A couple years ago I started noticing... " hey, cool, my thighs aren't as big " . Once I started having more problems, I realized that wasn't a good thing. I could never use a cane or walker (accept for drying wet jeans). It would mess up my back, neck, arms, and hands. That's why if I do get to the point of a wheelchair, it'll need a headrest. I guess most of my muscles are effected. I'm also starting to have breathing problems, but that's mild so far. I think my heart muscle is ok, although I've had my aortic valve replaced. My weakness, and fatigue were blamed on my bad heart valve for 20+ years. Once it was replaced, they knew something else was wrong. I also have memory difficulties, and my vision, and hearing are mildly effected. As far as dating, I guess if I do, I'll just have to be open about what's going on, and see if they call back. I suppose not all guys run away from an imperfect person. Take care, Kim > > > > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 Ahhhh..but who is perfect...I would *run* a mile from anyone who said that they are...and ROFL I have never met a *perfect* male...except for in *their* opinion, men are ALWAYS right, (not) Gillian > > > > > > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 Well, this isn't directed at me, but I am still walking around " for the most part " . I have to crawl up the stairs sometimes, and I use my parking placard liberally, " preemptively " in some cases because I can't afford to have a major episode when I am with the kids. I'd probably use a motorized wheelchair if I didn't have the placard, but I use the baby's stroller as a walker usually. I am now considering possibly using a motorized wheelchair, or possibly a motorized scooter (that is, like kids use, two wheels) if my balance will hold out, when I get a full-time job. As a further question on this, are there people who use a wheelchair " out and about " , but not at home? My FIL has post-polio syndrome, and he used to be able to walk around fine, then used a cane, then got a " Jazzy " that he has to use to move anymore than his hands can move him. I have a walker at home to help me move around the house, but don't use it extensively. 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 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 18, 2005 Report Share Posted March 18, 2005 I expect to be at that point some time, who knows if it will be in 5 or 20 years (I'm in my 30's, for those keeping track). I'm surprised I'm doing " so well " after 10 years of illness. I actually have a few days when I feel " okay " , but that's when I have to be careful I don't overdo it. One problem I've had with walking in public is that people tend to cut you off without thinking about it. When I have to " stop short " , it stresses out my muscles, so one of the things I like about using a stroller (or a wheeled walker) is that it gives a nice space around you. It makes people think twice before they run you over. 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 > > > > > > > > > > > > > > > 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 I expect to be at that point some time, who knows if it will be in 5 or 20 years (I'm in my 30's, for those keeping track). I'm surprised I'm doing " so well " after 10 years of illness. I actually have a few days when I feel " okay " , but that's when I have to be careful I don't overdo it. One problem I've had with walking in public is that people tend to cut you off without thinking about it. When I have to " stop short " , it stresses out my muscles, so one of the things I like about using a stroller (or a wheeled walker) is that it gives a nice space around you. It makes people think twice before they run you over. 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 > > > > > > > > > > > > > > > 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...
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