Are there many out like me. I been told i have spino cellebellar Ataxia but despite 3 stays in hospital over the years the doctors still don’t really know what i really have or the cause.
Whatever i do really have i have had for 35 years. Over the years i have gradually got worse. I am in my 60s now. My main problems are my balance and my walking. My walking has got worse the last few years and now it is a sort of shuffling stagger. Rather like i have had 3 or 4 pints and i often find it embarrassing when walking in public.
My questions are other people embarrassed over how they walk. And who is the best person to talk to about my walking balance problems. To be honest i do not have a lot of faith in doctors whose attitude seems to be carry on and if you get really bad or start having major problems come and see me. Otherwise don’t bother me.
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albion
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9 Replies
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Hi if it helps you here is my advice I am in the same boat so use a walking stick it is not as daft as it sounds
1 when people see a stick they see someone with a problem not a drunk and make allowances
2 it helps you
3 one of my problems was not slowing down and a stick forced me to
4 it makes you approach things differently using ramps instead of steps ect
hope this helps
in reply to
I agree with you but ive bought some poles and had my second session with them today and have been really pleased with the difference they are making - its meant i've been able to have a better posture and walk out more rather than tottering along. Ive not used them in public exactly yet -just on a lane near where i live- but found i could manage them well. The loops i think are importnat as you can kind of throw the sticks forward . The lad in the shop set them up to the right height which also helped.not sure when i am going to use them in front of people i know but this is a first step for me.
My advice would be to ask your GP for a referral to an ataxia accredited centre. I don't know where you live but there are 4 in the UK, in Sheffield, Newcastle, London and Oxford. The doctors there certainly wouldn't have the attitude you described above-they are all specialists in Ataxia.
Like johnpa I use a stick when outside and a wheelchair for longer distances or if I know I am going to have to stand for a long time. Using any kind of walking aid is a large psychological hurdle but I agree with everything johnpa says.
My son has CA, his walking is getting so bad, when i'm out with him I see people looking at him, don't what I would say if someone had to say something to him, he bangs into things, he has his independence but for how much longer?? He is going for an assessment for a wheelchair this week. Distance is an issue as well. This has happened in the last year.
Only had condition for max 2 years, part way thru diagnosis, but walking is an issue as is slurred speech. I find myself avoiding public places esp with friends who want to talk a lot. Went to a funeral yesterday with childhood friends I hadn't seen for 35+ years and found myself telling one by one a brief description of my condition pah ! Nightmare. Also, when it was my round at the bar (I was drinking orange then tea by the way !) had to ask a mate to carry the drinks. Felt a right charlie ! But better for getting thru the day okay, but had to tell folk, before they asked me. Speech wise I find if I slow everything down and pronounce things properly the words come out okay , if I talk in my normal fast manner it's slurred.
My walking or rather staggering is terrible, so much so that I have resorted to a wheelchair indoors (don't the skirting boards and lower door frames know it!!)'Some of the distances are impossibl although I still shuffle where I can.
As for who to talk to I can't help, what I would say is do what's right for you. You will know.
Thanks for the answers. I have seriously been thinking of a walking stick. Not so much because it will help my walking any benefit for that would be minor but as Johnpa said people will not just think i am drunk but will think i have walking problems.
I am also thinking of getting a referral to a centre of excellence from my GP. The main problem with that is the nearest one is probably Sheffield (i am in NW) and while it would be okay for one or two visits going on a regular basis would be expensive and time consuming.
just a note to albion I started using a stick at first because I was lacking a bit of self confidence and the other benefits followed, ataxia is invisible to the untrained eye so people tend to judge on first impresions. The jury is out about centers of excellence, I go to the one at the JR Oxford my neurologist had dr nemeth sit in and she organized a new mri + biopsy so things may happen we will see but going to one can only be a good thing i think you would only have to go once or twice I would have thought your neurologist would have sent you to one anyway
I go to Dr Cader at Oxford.I cannot walk even inside now so I lurch between bits of furniture.The Rollator did me for a number of years and I went everywhere with it.I kept falling over sticks and the would not help me now.It is a personal choice as the disease attacks us in different ways.I love my road scooter but I have managed with a very sturdy rollator for over two years.I still use it round the garden and my husband has just put a wooden tray on it for carrying things as things kept dropping off all round the garden.
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