Doctor's seem to hate that question. Quix, do you? I'm still getting about ok, but right now the biggest problem is my balance, and with falling so much every day it is becoming too much. Simply put, I am not going or doing what I would or could if I was either walking safely (not such awful balance problems) like my usual penguin self, or if I was able to use a wheel-chair that I could manually move about (I hate being dependent here). Simply sitting all day or laying in bed isn't an option, but some days I have to to protect myself by simply not walking..... i can't walk down the hall with falling or stand in one place without tipping over backwards or twirling about like a drunk ballerina. This week is getting terribly bad, I'm afraid.
So, advice? I once asked a dr. about using a wheel-chair and that was that, he blew up. He said that he wanted me to be as normal as possible, and he could see that I was trying to be normal so there was no way he would let me go into a wheelchair. He never let me explain that I WOULD ONLY USE IT TO BE MOBILE OUTSIDE OF MY HOME. Example: shopping trips, going to the Fair, going to meetings, getting from the car into the buildings, etc.
At this point, I don't care what they think... but I do care what you think. I'm falling, flailing my arms everywhere and hitting everything, and banging myself up everytime I try to move. Is it safe to just keep walking?
I think the answer would be you don't go to a wheelchair until it is absolutely necessary to function. Are you really flailing are much as you believe or are you self-conscious? I think with your fatique and other problems it would be reasonable to use a chair for things like outings. You want to stay a part of the outside world and not be trapped at home. Have you talked this over with your parents? What are their feelings or are they scared to see you in a chair? I'm sure that would be hard for all of you.
Hmmmm.... was thinking, the dr. who didn't like the idea of a wheel-chair also told me to walk bairfoot to combat the drop foot.... my PT was so in disbelief she snorted when she heard that! Evidently walking barefoot according to the PT (yes, I've found this out the hard way!) is kinda dangerous to your health if you have drop foot!
perhaps other dr.'s wouldn't be so cynical about a wheel-chair... who knows.
well, at this point we are already using a tranpsort wheelchair to shop, etc. and have been for a long time.
I talked to mom today and told her that it didn't look so bad to face the future if I knew that I would be able to move about on my own power even if that meant a manual wheelchair that I could operate with my arms, especially since my next appt. is on January 6th, 2009.
I simply hate it, this falling thing. Yesterday it was so bad, my mum told me to just lay or sit down and not get up, becuase I couldn't just move about safely. I'm actually not that self-concious about it, becuase I've been falling for about 3 (?) years now in front of folks....
the problem is that in the past two weeks it's gotten out of hand, and just standing somewhere isn't safe- I CAN'T stand in one position without falling backward like a log... it's automatic (eyes wide open and hands outstretched). I'm either falling or grabbing everything to keep from falling so many times in an hour it's not countable, LuLu.... a trip from my bedroom to the kitchen would result in a loss of balance.
I'm trying to decide if the PT has aggervated the balance, or if it's some type of relapse or attack because I'm now falling when I'm moving or losing my balance when I'm walking as well, which is NOT NORMAL! My walking style is changing, my turns are getting worse and my upper body is twisting when I'm walking so it's just all odd.
I do understand it's a last resort... and I wouldn't use it normally around the house, I'm getting AFO's which will help the foot drop. But it's the balance that's really getting me.
Maybe you can use a mixture of both walking and wheelchair in the house. When you're feeling better with the balance, trying walking. However, when you're doing poorly with balance, I'd use a wheelchair. You don't want to be confined to the bed or chair--it's depressing!
I remember when I couldn't get around very well because of the pain in my feet and poor balance (no wheelchair) and stayed in bed--I hated it and became very depressed. I imagine if I had a wheelchair, getting out of the house and just getting around my own house would have made a great deal of good. Plus, the more I lay in the bed, the worse the spasticity pain gets.
I have thought about getting a wheelchair for work, but the situation has improved for me. The pain in the feet (after several years) had actually improved (I like to think it is the Copaxone shots).
The AFOs are meant for you to raise your feet up to the point that you would clear the floor for you to walk. It may not help much with the balance, but it could help with the pain in your feet. I'd still get the wheelchair, though. Staying in bed is for the birds!!!!!!!! You're too young to be couped up in the house . . .
Ultimately you have to do what feels right to you. I remember reading something about a person with MS who keeps a cane, walker, and wheelchair in their car (must be a large car). The point was they could decide each time what "assistance" they needed to accomplish the outing.
You know your body best. And you don't want to suffer an injury during a fall that would just aggravate your condition.
With your balance so much worse, why not see another doctor now? It's best when doctors can see us at our worst.
i have read alot of youuur posts, YOu have been inspire to manyhere, me including.
WHile I am older , years ago my illnesses started and I asked the question too.... WHEN do you know it is time for a wheel chair?FIRST and foremost SAFETY , in whatever you need to be safe.
I had to bring up my decission needing my w/c before mmy neuro.
He thenn thought it was good time and wrote my perscriptt .
My chair is so comfy, custom to my build.
I had rented /borrowed some prior to mine ( certainally not ones I could spend much time in) and new it was time.
Like the day i got my park pass, the day I got my chair, i cried.
But I also cheered, thiiiink now somewhat more independdnet doing things that would stop me from not having one.
I had seen my diiiizzy doctor a ffffew times and she wanted me with a walker (prior to my w/c). It can help keeping forward. Maybe thats a partial solution for you. One witha seat and a back strap.
THese are not easy decissions, when we should not have to make. But if this help keep ing us living the best we can, then we do.
I hope the braces help alot!
take gooodcare, amo
I do use a cane, have since May... and have used a transport wheelchair since June to shop... but now I want to be more indepent and safe when I leave the house. Dr.'s and so forth freak out and think that you are copping out it it seems, but that is not what I am about. (you know that!)
I just know I could do more with a wheelchair. I'm not saying that I would be in it all the time..... just on my very worst days and to leave the house for long walking stretches.
I'm looking at the lightweight ones that I could move with my arms... there are some that aren't too expensive that I could find used that would be light enough for me to fold and lift into my car, and light enough for me to push myself around in. :) I would get better arm muscles---- good thing I only weigh a little bit over 100 lbs. :)
I just wanted to belatedly say I thought this was a very good question. I haven't had to face the wheelchair dilemma (yet), but it seems like MS (at least for me) is a continual process of adaptation and I often wish someone would provide more guidance on when and how to adapt.
I think these kind of decisions cut both ways. I have caused myself unnecessary suffering and missed out on things by refusing to give in to the need for some sort of accommodation to this stupid disease. And with the benefit of hindsight, I can also say that I would've appreciated the times when things were better more had I not been doing so much resisting and worrying about the future. But, I still can't seem to stop myself from freaking out when things get worse.
Sometimes I stop doing things, thinking it will be temporary, and then find it too overwhelming to start up again. Then I wonder if I would have been better off had I just persevered somehow.
I'm glad you are able to have the sense and strength to make realistic accommodations to your current circumstances in order to live life as fully as possible. I wish I could be so wise...
Sho, hmmm... I definetly wouldn't call myself wise, I'm the one who almost broke my toe walking into the door jam yesterday, who was totally having hysterical laughter over Calvin and Hobbes a few minutes ago and was enjoying Charlie Brown and the Great Pumpkin... don't know how much wisdom can come from a brain that is filled with too laughter... :)
On the serious side though, I've really tried to balance this whole living life thing. I mean, I've tried the whole cope until we find a diagnosis thing, or believe this is just temporary and that it all disapear in a month of two and in the meantime we'll just live life as much as possible. I've found when you do either of these two things, you focus to much on what you can't do instead of what you can.
Well, that doesn't leave much enjoyment in life. So, I'm trying to learn coping mechanism, hello....wheelchair, hand-rails, hand-controls for my car, AFO's for me feet, and everything. You know, if this disapears, the whole world will do the happy dance, me in the lead. If not, I will not look back and regret the months that I spent either cooped up or on a chair or in bed waiting for it to leave or for me to find a diagnosis.
I'm ready to get back out there, to drive, to wheel or walk where I want to, to go places with my family and friends without thinking what the floors are like (will I trip and fall) or thinking if I can stand today or will I be falling today from my lack of balance. World, here I come.
I truely hope that other will find answers, and also find ways to cope in the mean time so that they can enjoy life to the fullest too!
I hear what you're saying about the wheelchair question. Should I....Shouldn't I? I have not reached that point or that question but I do have a cane. I try not to use it at all but there have been a couple of nurses and doctors that thinks I should carry it with me. I walk straight alright with a few problems like my leg might drag now and then and I'll trip a little but the real issue is rounding corners, up and down stais or any obstacles in general. I've fallen a few times but I still can't see myself with a cane.
Sunny? I commend you!!! I hope some of your way of thinking will rub off on me!!
All I can comment on here is my own opinion of the matter. I had a major crying fit the day I bought my cane. Hated it. Now I've learned that I'm being a dork and have learned that the cane isn't defining me - it's just helping me. I use it when I need.
While I understand there is need for you to still exercise and not get 'boxed in' by a chair, it certainly sounds to me like you are approaching this reasonably. I mean...if you need it, use it. Why would you risk injury and confine yourself just because you don't want to risk offending someone? That's just silly your doctor did that. There are ways for you to get your exercise, and as you've said - you're not going to use it unless you need it.
I think one of the most important things to do for your mental health is to get out and about - so use the chair.
I was just at the neuro's office today, and a woman with MS had one of those Segways to get around in. Much better than a chair, because she could reach the counter. Something to consider! The only thing I didn't like about it was the whining noise it generates - very irritating to the eardrum.
buriedinfur- I remember when I got my cane in May- I vowed if I had to use a cane I would find the snazziest looking one in town, and the best part is that now everyone likes to hold my cane and comment on it... it's metallic with all sorts of pastel metallic paints splashed all over it.
Jenn- those segways take balance, and let me tell you, that is what I LACK! :) Can you imagine me falling on top of one of those? They do make a funny noise too. :)
T-LYNN- MY LEGS ARE LOOKING LIKE THEY MAY BE ATROPHYING FROM MY FUNNY PENGUIN WALK ALREADY... I KNOW THAT NOW IS THE TIME FOR A WHEELCHAIR FOR BAD DAYS, TONIGHT MY MUM HAD TO ALMOST CARRY ME BACK THE HALL. IT SEEMS THAT BY AFTERNOON/EVENING THIS WEEK MY LEGS JUST HAVE NO 'GO' IN THEM, I CAN'T EVEN DRAG THEM ANYMORE, AND THEN I JUST FALL SO MUCH EASIER WHEN I'M OFF BALANCE WITH MY LEGS.
IT is A HARD QUESTION, THIS WHOLE 'WHEN IS THE RIGHT TIME' BUT YOU DO KNOW, DON'T YOU, WHEN IT IS THE RIGHT TIME. I THINK IT HITS YOU WHEN YOU REALIZE HOW MUCH MORE YOU COULD BE DOING, HOW MUCH FREE-ER YOU COULD BE IF YOU WHERE 'ROLLING' AROUND INSTEAD OF 'FALLING' AROUND. AM I MAKING SENSE? I'VE ALWAYS ADMIRED YOU T-LYN FOR THE GET-UP-AND-GO YOU SEEM TO HAVE, THANKS FOR POSTING!
Shell- my folks and I talked this evening, and we actually decided that we could spend a couple of hundered on a nice one, instead of just $150 (i just couldn't find ANYTHING). The still want to stay in the $200 to $300 range so we can afford in but maybe I can find something used on Ebay, etc. I'm looking for a black one (i CAN'T stand those hospital blue ones) that is lightweight and folding, so that will be harder to find. Wish me luck!
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