Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 unfortunately i was hugging a very old friend on sunday and let go of my walker. guess what i took her down with me. i now know that i must use a stabilizer at all times/ i am a year into this mess. i have lost my speech and my balance ann hill balance > > Hi Gang, > > Had a question about something. Up to this point I have been doing quite > well with my PLS. I only have fasciculations, hyper-reflexes, clonus, and > wear an AFO on my right leg as it started to turn inward, great toe upward > and others grabbing under. > > I have not taken any falls, but now I notice that I loose my balance when I > lean forward...like, when I give someone a hug, I can't seem to recover from > that slight leaning forward and have to hang on to reposition myself. You > suppose this is part of the progression and have others experienced that? > > Thanks! > > Cookie > **************************** > Man's way leads to a hopeless > end..God's way leads to an endless > hope. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 Ann: Balance has always been a problem for me, more then anything else. Having had PLS for well over 30 years, you must be aware at all times. I took two very very bad falls last year, all because of balance. Not paying attention, not being aware! In the beginning I thought it my clumsiness, but it was the " shoes " I was wearing. My grandkids (learned the hard way), you don't run and jump into Grandma's arms when she is standing up). It's all a learning experience. I now use my power chair when I am out, still walk with the walker at home. You can't fight this disease, so you do whatever it takes to protect yourself. be aware of why you fall, and what it will take to avoid them. Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. It's better to have Laugh Wrinkles than Worry Warts! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 thanks for the advice, rita. unfortunatel i have found what sets me off balance, like grandkids running over with kisses sad, i used to love those greetings ann hill Re: balance > Ann: > > Balance has always been a problem for me, more then anything else. > Having had PLS for well over 30 years, you must be aware at all times. > I took two very very bad falls last year, all because of balance. Not > paying attention, not being aware! In the beginning I thought it my > clumsiness, but it was the " shoes " I was wearing. > > My grandkids (learned the hard way), you don't run and jump into > Grandma's arms when she is standing up). It's all a learning > experience. I now use my power chair when I am out, still walk with the > walker at home. You can't fight this disease, so you do whatever it > takes to protect yourself. be aware of why you fall, and what it will > take to avoid them. > > Rita > > Luv & Hugs! > > > > > ************************************* > Some people succeed in spite of their handicap. Others succeed because > of them. > > > It's better to have Laugh Wrinkles than Worry Warts! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2003 Report Share Posted September 30, 2003 that hugging thing - I quite agree I lean over to hug someone and more or less fall into them - fine if you know them pretty well not sure what they think maybe there's a way to reposition you feet first - but I haven't discovered it yet Cheers Kiwi balance Hi Gang, Had a question about something. Up to this point I have been doing quite well with my PLS. I only have fasciculations, hyper-reflexes, clonus, and wear an AFO on my right leg as it started to turn inward, great toe upward and others grabbing under. I have not taken any falls, but now I notice that I loose my balance when I lean forward...like, when I give someone a hug, I can't seem to recover from that slight leaning forward and have to hang on to reposition myself. You suppose this is part of the progression and have others experienced that? Thanks! Cookie **************************** Man's way leads to a hopeless end..God's way leads to an endless hope. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2003 Report Share Posted September 30, 2003 Cookie: I get off balance if I tilt backwards just a bit. Forward leaning does not bother me, but if I get bumped backwards, I end up on the ground. I've got lots of padding behind me, but it still hurts. For my job, I had to learn the Mandt procedure for " restraining " our clients at the group home. Part of the training was deflecting blows, and when one of my fellow students gave me a backward push, I went plunk! She felt bad, but so did I. More embarrassment than anything, I think. I am definitely more off-balance than I was a year ago. (All you that know me, can kindly restrain yourselves from any comment here) Love to all, Laurel Yost Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2003 Report Share Posted September 30, 2003 Hi Laurel mine also is backward or as they said at Mayo posterial imbalance but i have fallen forward after a quick turn around in my back yard did'nt pick up my feet .most of my falls seem to be fairly controllable as in i seem to be able to slow them down .there not so sudden that i cant react somewhat .Always seems to be to my weak side, the right . I dont think the zanaflex does anything for this GEO Re: balance Cookie: I get off balance if I tilt backwards just a bit. Forward leaning does not bother me, but if I get bumped backwards, I end up on the ground. I've got lots of padding behind me, but it still hurts. For my job, I had to learn the Mandt procedure for " restraining " our clients at the group home. Part of the training was deflecting blows, and when one of my fellow students gave me a backward push, I went plunk! She felt bad, but so did I. More embarrassment than anything, I think. I am definitely more off-balance than I was a year ago. (All you that know me, can kindly restrain yourselves from any comment here) Love to all, Laurel Yost Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2003 Report Share Posted September 30, 2003 Hello group, I know when I went to give someone a hug at Teamwalk, we both had to stop and position ourselves so we didn't fall and it was more of the shoulder hug--we must have been a sight! LOL I asked my almost 3 year old nephew for a hug and he came running up to me and almost knocked me over--I had my cane, but thank God I was standing near a wall! ;o) Sue Me (hsp) PS It was so nice to meet some of you at the Teamwalk! > that hugging thing - I quite agree > I lean over to hug someone and more or less fall into them - fine if you > know them pretty well > not sure what they think > > maybe there's a way to reposition you feet first - but I haven't discovered > it yet > > Cheers > Kiwi > > > balance > > > > Hi Gang, > > Had a question about something. Up to this point I have been doing quite > well with my PLS. I only have fasciculations, hyper-reflexes, clonus, and > wear an AFO on my right leg as it started to turn inward, great toe upward > and others grabbing under. > > I have not taken any falls, but now I notice that I loose my balance when > I > lean forward...like, when I give someone a hug, I can't seem to recover > from > that slight leaning forward and have to hang on to reposition myself. You > suppose this is part of the progression and have others experienced that? > > Thanks! > > Cookie > **************************** > Man's way leads to a hopeless > end..God's way leads to an endless > hope. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2003 Report Share Posted October 1, 2003 Sue Ellen, Thanks for your reply. It's so helpful to know that others are experiencing or have already experienced " the next step " . Do you use a cane or walker? Hope you have a great day. Cookie -- **************************** Man's way leads to a hopeless end..God's way leads to an endless hope. > Cookie, > That was how my balance started going. I was at a trade show and leaning over > my table talking to someone. When I straightened up I almost went straight over > backward. Very scary! Also, if I caught my toe or even brushed my leg or arm > against something as I walked it could throw my balance off and down I would go. > Balance is a fine motor skill so it will be one of the ones you will see > progressing more easily. When I bend over now I hold onto something or lean > against something solid. Not so many surprises that way. > Regards, Sue Ellen > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2003 Report Share Posted October 1, 2003 Speaking of these machines, I am getting more slurred, my wife was wondering before my voice goes totally do this machines allow you to record your own voice? thanks, dale Re: balance Ann: Good for you! When we were at the Team/Walk, Thurza showed my kids her machine that talks for her (I have been totally fascinated by it). Had you ever considered one? If your speech is so bad, you might consider one. She said her insurance paid for it. I know if I was in that situation, where my speech was effected, I wouldn't hesitate for one minute to use one. Thats how I deal with having PLS, whatever helps me to keep functioning I buy or do it. Thank God we live in this time (2003) where being physically disabled is not a " curse any more " . Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. It's better to have Laugh Wrinkles than Worry Warts! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2003 Report Share Posted October 1, 2003 Maggie, You didn't mention if you use a walker or not. Maybe it wouldn't hurt to use one during the night. It comes in handy and you wouldn't fall as often. As far as forgetting words I find that I often forget how to spell or speak but I just chalk it up to being alone all day and away from a job you know the mind gets idle.............Flora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2003 Report Share Posted October 1, 2003 I kept falling over riding a bike down a volcano in Hawaii. That was my first clue. Later, when I was expected to fix an experiment at work, I'd fall into the thing, usually breaking it even worse. They were real nice, but let me go anyway. Can't say as I blame them. I used to explore caves and even got a safety award for flying hang gliders. The operative expression is " used to. " I used to rescue people in caves and didn't fancy winding up on a stretcher myself. So I pretty much quit caving. Same thing for hang gliding, where difficulty moving can get pretty serious pretty quick. I'm not real good at hiking anymore so I got myself a kayak (no, they can be much less " tippy " than a canoe, unless you want a real fast one) and now boat around. I use a cane now all the time and get some real neat stares when folks see me get out of a kayak and then hobble away. Granted, I won't be heading to Yosemite or something but I can show you some neat places in the Everglades. Besides, being in a kayak is a good place for me to practice my sitting, which I just know is going to be an Olympic sport. Standing upright and walking are overrated in my book. Galen Hekhuis NpD, JFR, GWA ghekhuis@... A penny saved gathers no moss Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2003 Report Share Posted October 1, 2003 Cookie, I use a walker all the time at home and if I'm running short errands will use it, but anything that takes a long time, like groceries, I use the electric cart at the store. I also have a wheelchair my friend pushes me in if we're going to the mall, or a movie or the museum. I used my cane for about 2 years but " graduated " to my walker full-time when the cane no longer stopped my falls. I've had PLS for 7 years and started using the cane about 3 yr after first symptoms. Regards, Sue Ellen Quote Link to comment Share on other sites More sharing options...
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