I have ataxia..thought to be EA2 but not entirely sure because from having episodes for years I had one long continuous one from last 0ct to Jan which left the docs scartching their heads. (Personally I think I had some sort of virus on top that just screwed up the system) I'm ok ish now.. good days and bad.
I can walk.. fine on good days, but get fatigued very fast, wobbly other days and rubbish on others. It has spoiled family days out and even shopping trips because I just can't go far, so have reluctantly decided to get a 2,d hand chair for trips out. I spoke to my GP about it because I feel a bit of a fraud.. an intermittent problem looks very 'little Britain'! She was fine and also suggested we get me a blue badge for the bad days.. something I do think will be useful. I don't claim DLA as I feel I can still cope and work (I know the benefit is not just for those too disabled to work but frankly I can't face the PIP forms!) so she has to do a supporting letter.
So..my question is.. is it OK to be a 'casual' user? And what do people recommend? I need to get something that will go in the boot of a small car/back seats. I do not want a granny scooter! I'm not sure if manual (but lightweight) or small power would be better. I'd need to be able to go outside not just round shops.
I agree with John. Do what you need to do and do not worry about what people think.
The type of wheelchair you need should be adapted to your needs. You need to talk to someone in a medical supply store.
I only use a wheel chair if going to a big store for a long time or an exhibit for example or any place that requires a lot of walking or standing.
I can walk in a store, but get tired within a few minutes. My husband is always with me , so I do not need a motorized wheelchair. He is my engine and pushes me. I am a small person, so my wheelchair is small. You can fold it and put it in a car trunk, but if I had to do it by myself, it would be difficult as it is a little heavy, although my husband says it is light…
I cannot recommend any particular chair since you are in England and I am in the States. However, I can tell you that the brand name of my chair is DRIVE and I like it. Good quality.
Do not feel like a fraud because you might not use it all the time. Keep your spirits up and good luck to you.
I too have good days and bad days and of course good moments and bad moments. It really depends on how "awake" my brain is and also the environment and the activity. For example: This morning I did my usual 6 mile hike, but when I go to the market I will use my service dog. I suppose people wonder," How can she hike like that one minute and need an assistance dog the next?" But here's the deal; I don't need to use my eyes for fixation on my hikes, I have adapted to walking almost solely by foot feel(no pun intended), and so my coordination(most days) can be pretty good so long as I don't try to integrate vision or vestibular into the mix or have to plan my steps. I can't hike, say for example, if someone is walking in front of me or anywhere in my visual field because I can't balance if I can't find a place for my eyes to "just be" and I(my brain) can't plan my next step if there is too much planning involved, (like trying to avoid a ditch or a friend) because my "planning parts" are what is broken. ;-)
I used to feel like I had to explain my abilities right along side with my disabilities and visa versa. But now I think I just do what and when I feel comfortable with. Tell the people who you want to tell. Like for me it was the checkers at the grocery store because I knew they wondered at my good days and bad days. I can say that I am getting more and more comfortable "educating" people in no more than three sentences what is "wrong" with me. I know I don't have to, but so many times it puts people at ease and then I can just be. For me that is my happiest time, when I can just be, some days that's very handicapped, other days that's abled. My vote, don't let having to explain away the able days stop you from using a tool that you need on your bad days.
Do whatever makes you feel comfortable and safe. For instance, I use a cane when I leave home to give me more stability and prevent falls. I don't use it at home, although I've fallen a few times. I've learned the hard way to be extra/extra careful. I don't care what anyone thinks, as my physical and mental well-being is the most important thing! Like you, I have bad and better days, although I have my ataxia 24/7. I live in the States, so can't advise you on what to get. My best to you..., ;o)
It is very hard to come to terms with the tiresome days, the cancelled outings and the wonderful but short days. We all have them, personally it took me have fallen inside outside and collapsing in a store and ending up in hospital on many occasions to realize that I have to look out for myself and so do you. If you need a chair, accept it, because you are showing love for yourself and making it easier on others on those difficult days. Don't forget we all love and care about you. I have a walker with a seat that folds in the car, an indoor walker for around the house and so many canes inside and in the car for out and about. the bad day are hard but i am accepting the hard facts that this illness and it's progression is different for every one. as for a scooter, go to a place where you can try them out and get advice. try them all if you have to and see if which one is right for you. You have the power. Take charge and you will make the right decision for yourself.
Well! Macforme, you just asked something that I have been concerned about for some time now but did not know how to put the question here.
I have bad days and better days just like lots of other ataxians. I cannot walk far so use a walking stick for aid at home and two if 'out and about'. I also have a mobility (granny if we must) scooter for local travel.
My problem is that I sometimes go with friends to places where a mobility scooter would be, at best, problematic but a wheelchair would have no problems with access etc. I also have family in Germany that I try to visit once a year but have put it off this year as my mobility has worsened and I am not able to take my mobility scooter over there.
I'm normally quite positive and would normally write something that suggest you be positive and do what is right for you. On the whole 'Should I / Shouldn't I use a wheelchair' question though, I was at a loss.
It seems I should not have worried! Thanks for the question and thanks to all those answering. I will find it easier to answer my own question regarding wheelchair use now though I will likely consult my GP on the issue as I feel that it would be prudent to do so.
Hi Macforme - I have days that are better than others, and I agree with the others that you’ve gotta do what you’ve gotta do to keep yourself safe from falling, etc.
I also live in the US, but you might check out the Ataxia UK site on here or do a search for those who are doing what you want to do.
Depending on your needs (ie upper-body strength), this will determine what you need in a chair. Probably a salesperson at a medical equipment place could help you in figuring out and supplying you with something that will help you on your off-days.
Hi Macforme - I have days that are better than others, and I agree with the others that you've gotta do what you've gotta do to keep yourself safe from falling, etc.
I also live in the US, but you might check out the Ataxia UK site on here or do a search for those who are doing what you want to do.
Depending on your needs (ie upper-body strength), this will determine what you need in a chair. Probably a salesperson at a medical equipment place could help you in figuring out and supplying you with something that will help you on your off-days.
I am a small person, so my wheelchair is small. You can fold it and put it in a car trunk, but if I had to do it by myself, it would be difficult as it is a little heavy, although my husband says it is light…