Wobbly in a wheelchair

[sheild]

Hi

I have a problem when out in my new manual wheelchair, and am just wondering if it is typical of ataxia and/or Miotchondrial disease (which I have a diagnosis of).

I am fine on level surfaces, totally panic stricken going down a slight slope (feels like I am nose diving/falling away), and all at sea on the sloping surfaces along pavements and shopping areas. It's so bad that I try to lean in the opposite direction sideways to kind of compensate for the drift of the wheelchair. I can wheel myself along the slopes but the imbalance is just too much. According to my hubby I am over-compensating but it feels awful to try and sit straight. And when he tips me back to go over a shop threshold I totally lose it, bit like passing out.

He is of the opinion that I can train my brain to deal with these slopes but I am sure that isn't right.

Do folk with ataxia have these problems that seem much worse than for 'normal' wheelchair users?

The good news is that I have lost my bingo wings!

[HarryB Administrator]

Hi sheild

I think this is maybe something you should talk to a Physio/OT to make sure the seating in your wheelchair is correct for you. Also they may suggest wearing the seatbelt attached to the chair when you know you will have to navigate slopes.

I don't know how long you have been using a wheelchair for but it might be that you are still acclimatising. I only use my wheelchair when outside/for long distances/when I know there will be a lot of standing around and because the experience is so different, for a start you are seeing the world from a completely different height to the one around you, it does take me a while to get used to it every time I use the chair. It is even harder if you have difficulty maintaining your balance in a sitting position.

Good on you out the bingo wings. I wish to high heaven I could get of mine!!

Harriet

[sheild in reply to HarryB]

Hi Harriet

I can sit upright no problem it's navigating slopes that screws my head and creates the feeling of falling. I use my seat belt as a matter of routine, when my hubby helps on upward slopes and lumpy pavement he has been known to almost tip me out.

I don't have any OT/physio support although I was offered an hour at the Oxford clinic, and have asked, will have to try again. I also have had no help buying equipment and we have spent a lot of money on unsuitable aids. Where we live patients aren't allowed a wheelchair until they are unable to get around the home, it's perfectly OK to be housebound like I was. They (Wheelchair services) won't even do an assessment of the right wheelchair for me, it's completely out of their remit.

It's the problem with 'falling' and the associated sick feeling that I was asking about, whether it might be related to ataxia type problems or something else.

Recipe for shrinking bingo wings, an hour's shopping in the streets, not on a smooth shopping mall though. Mind you 24 hours later I am still utterly exhausted...

[silkwood]

Hi Shield

I have CA.Also been in a wh/ch for 2 years. Get similar symptoms to you.Limbs seem to over-react at whiff of imbalance.