I know this sounds weird but I have been haveing so much deep muscle and joint pain that I find it real hard to even move. Feels like all the muscles are tightening up and get tired and exhausted easily....I'm not one to just sit on my ass and even though I have seveer balance and dizzieness problems I still like doing things.I won't go into details because they can and could be dangerous because of the balance and dizzieness and vision porblems, but I have been thinking very seroisly about getting one just to get around outside of the house, like the mall and stuff. when dose a person really think or more to the point when should someone get one?I know a wheel chair wouldn't do much good but I'm a little aprehensive in getting one but I think it's more of a pride and dignity thing....Any advise?.....
Hi Ken-
I don’t know if you have made a decision yet regarding a chair, but I thought I would chime in with my own experience. Just go with practical logic and if you feel that you need a power chair, go for it! The right time is when you feel the need. If it truly is an issue of pride, then tell yourself that it will allow you a little more freedom and control over your ataxia.
When I first began having symtoms last year (not yet diagnosed), I knew I needed something to assist in my balance. I started with a cane, then a rollator and finally a wheelchair for longer outings, all in a month! I did not think twice about how I looked, etc. I knew I needed assistance and I took advantage of what was available. I will soon be getting a scooter so I won’t have to rely on someone pushing me in my chair. I also upgraded to a new Dolomite Jazz rollator that I love! Allows me to walk more in the frame with better stability.
I wish you the best!
I am at the same stage and wondering the same.
Hi
I think all ataxians must not fall
Should use a chair sooner rather later
Particularly to prevent falling.
Regards
Barney
It's very important to prevent falling... I have been using a power chair since 2008, when pain and vertigo forced me into it. Turned out I have Lyme disease. Have you been tested for Lyme? Check out the symptoms and see if anything sounds familiar: http://www.anapsid.org/lyme/symptoms/
Good luck!
If you need to ask the question, you've already answered it.
When I win the lottery.
Patsy x
I spoke with my neurologist and it was decided that it was best that I have an electric wheelchair. For the most part I still use my walker but I have it if and when I need it. I'm 38 and felt that it would be hard for the one I love to have a hard time with it - They didn't the kids love it and think it's cool. I say GO FOR IT!
Hi Ken, I have to mention what actually is helping me out so I don't have as much pain sounds so simple but it actually helps not having refined sugars now since 2008. After 3 days even colors seemed more clear to me let alone the pain was lowered so much. I think it's diffrent and the time that it can help dependes though on how much a person is used to having etc in everyone. Refined sugar can cause inflamation in our bodies.
Not having as much pain then It alow me to strech my joints and limbs much more to work that pain out. For me when I do get any little pain now I think of it as just a trugger that I need to move that area to get more oxygen in that area. So I just strech it for a few mins and that helps me. But I think the combination is what does it. Arnica gell helps me also when I have a flare up. I have to really rub it in hard, and sometimes 2 times but then I hardly notice it's there!
Hope that gives you an idea of what might work for you too! :0)
Jeannie, where do you get Arnica gel? Yes, I find stretching my muscles daily REALLY helps with pain/discomfort. I stretch various muscles each morning, after I wake up, BEFORE I even get out of bed, as that helps me! Hi Ken, I use a cane when I leave home to prevent falls, but am able to walk, carefully, in my home without it (so I thought, until recently). I have fallen in my home several times. Used to be I didn't hurt myself. In November, I fell backwards in my kitchen, landing on my tush and hairline fracturing my pelvis. In January, I fell in my family room (I was negotiating a step-up between my laundry room and family room, and had a bag of groceries in each hand). Anyway, I fell and hit the back of my noggin on the corner of the wall. I sported a painful bump on the back of my head for a few weeks! I think I should be using my cane inside my home as well...,duh...,ha! As I've said before on this site, falling is not my idea of a good time! Enough about me! If you feel you'd get around easier with a power chair (and as other have said)...,then go for it! Try not to worry about your pride and dignity, as better safe than sorry!!! It took a fall outside my home to start using a cane, as I really injured my back (2 years ago, and I was diagnosed with ataxia 10 years ago), as I was concerned about my pride and dignity. But people are so kind, holding doors open for me, etc. I even had a gentleman, who was talking on his cell phone, offer to open my car door for me, as I had a takeout bag in one hand, and my cane in the other...,ha! Eventually, I'll have to use a walker and possibly a power or wheel chair and to be safe as well as comfortably mobile, I gladly will!!! ;o)
Hi Ken, I truly appreciate where you are coming from (especially your dignity issue.).I have been fighting getting a walker for 3-4 yrs. ...Thanks to my Family Dr. & O.T therapist who is coming to my home. . I got one a month ago.
I didn't want anyone to see me using so I would go out after 9/10 PM. .
Ken ! Today I had had my hubby drop me off at at the mall. It was fantastic 11:30 AM till 1:30 PM............. I was totally wiped out but "independence "that I felt are priceless.
I will go again but time myself and not over do.
Oh - Ken! get the power chair , You deserve it . I don't have your issues and admire you for the way you handle it.
God Bless & keep Up the good work
Enjoy your chair , Lassie Elena
Hi Ken, My doctor wrote me a prescription for a medical travel scooter. My legs can't walk very far, and I was missing out on events with the family. Especially if the event included traveling across grass and gravel. We paid for a scooter the other day to go to the zoo. It was great. I could enjoy myself without worrying how long I was going to be able to walk. I haven't fill the prescription yet. I am excited to get one because then I will feel independent. Ahbee
I find a scooter is very useful also because when you turn your head you can concentrate instead of falling over.
Well My neuro say me the other day and told me that he thinks I should stop useing the cane now and to start useing a walker but he is very hesitant with me in even useing a walker now. and when I first posted this I was already looking into some Power chairs and Got a great deal on one a jazzy 614 hd, I really did alot of reasearch on them to find the best one that could go an almost all terraine best distance and a big must gray tires. the black tires leave marks on almost all surfaces...Found it on craigs list and it was about 1 year old and was only used for about three weeks It's about 3 to 6 thousand dollars new but I got it for 250.00. I have to plan ahead and I think I made a great choice but still get alot of looks that really bother me alot people stare and kind of even follow ya all the while still stareing...It's just the Idea that don't they have something better to do than just keep stareing at ya....It's very annoying and degrading at the same time....I guess I'll have to work on it so I just don't blow up at someone.....
Hi Ken, Try to ignore people who stare, as they are very rude and ignorant! I'd tell myself they are just envious that they don't have a chair...,ha! Better safe than sorry! I admire you for realizing your safety and comfort comes first! Your chair sounds awesome, as well as a great deal! Kudos to you!!! ;o)
Arnica gel is a cream in a tube. I get Arnica Gel from either the Health Food store or even drug store also Amazon carries it too. Any brand seems to work. Price can very allot. I find even though Amazon carries this it's a few more $ so check around to see.
rose said:
Jeannie, where do you get Arnica gel? Yes, I find stretching my muscles daily REALLY helps with pain/discomfort. I stretch various muscles each morning, after I wake up, BEFORE I even get out of bed, as that helps me! Hi Ken, I use a cane when I leave home to prevent falls, but am able to walk, carefully, in my home without it (so I thought, until recently). I have fallen in my home several times. Used to be I didn't hurt myself. In November, I fell backwards in my kitchen, landing on my tush and hairline fracturing my pelvis. In January, I fell in my family room (I was negotiating a step-up between my laundry room and family room, and had a bag of groceries in each hand). Anyway, I fell and hit the back of my noggin on the corner of the wall. I sported a painful bump on the back of my head for a few weeks! I think I should be using my cane inside my home as well...,duh...,ha! As I've said before on this site, falling is not my idea of a good time! Enough about me! If you feel you'd get around easier with a power chair (and as other have said)...,then go for it! Try not to worry about your pride and dignity, as better safe than sorry!!! It took a fall outside my home to start using a cane, as I really injured my back (2 years ago, and I was diagnosed with ataxia 10 years ago), as I was concerned about my pride and dignity. But people are so kind, holding doors open for me, etc. I even had a gentleman, who was talking on his cell phone, offer to open my car door for me, as I had a takeout bag in one hand, and my cane in the other...,ha! Eventually, I'll have to use a walker and possibly a power or wheel chair and to be safe as well as comfortably mobile, I gladly will!!! ;o)
Hi Ken, Think of it this way. You don't really know what they are looking at. Maybe you just remind them of someone else that they know, or they want to see if that's a good chair and if it works for you maybe they know of someone that needs one. Who know's they may even just like the way your hair is cut. My point is I think we see people looking at us and because of our fear we take it more negitive than it may be intended. So next time someone looks maybe they are trying to figure out if they met you somewhere before. I know I sometimes look at people not at their disablilty etc. :0)
ken said:
Well My neuro say me the other day and told me that he thinks I should stop useing the cane now and to start useing a walker but he is very hesitant with me in even useing a walker now. and when I first posted this I was already looking into some Power chairs and Got a great deal on one a jazzy 614 hd, I really did alot of reasearch on them to find the best one that could go an almost all terraine best distance and a big must gray tires. the black tires leave marks on almost all surfaces...Found it on craigs list and it was about 1 year old and was only used for about three weeks It's about 3 to 6 thousand dollars new but I got it for 250.00. I have to plan ahead and I think I made a great choice but still get alot of looks that really bother me alot people stare and kind of even follow ya all the while still stareing...It's just the Idea that don't they have something better to do than just keep stareing at ya....It's very annoying and degrading at the same time....I guess I'll have to work on it so I just don't blow up at someone.....
Your answer as to why people stare was very kind & compassionate Jeannie! ;o)
my physical therapist suggested i get a chair. i broke my ankle in 2010 and i still can't walk. i would get one and get used to it on your ownn time. just to have it there if you ever need it.
lorraine