Twisted to one side

[nutter]

Hi I'm Louise I have had Friedrich's Ataxia for 19 years I have been i n a wheelchair for 13 years my body is twisting to one side for the last 2 years.

[Aasia]

That must be stressful for you . How old are you Louise ?

[nutter in reply to Aasia]

32

[flawlesssFayx]

Hi Louise, I've got FA diagnosed age 18, been in w.c. since birth of 1st daughter at age 27 [I have 2, aged 25 & 27,both ok, no FA!] . Recently moved to Merseyside. Where about's are you? I am now 55 in June, stand in frame every day [with husbands help] and do 'upper body' exercises about 4 to 5 times a week. I still use a 'Sam Hall' turner for transfers [for last 15 years], not a hoist! I too twist to [me to the right] side, I presume from transferring so many years using a rail [am right handed]. It has for about 6 months now, forever being pulled up on my right. Wake at night, now, all twisted. Get a pain in my ribs when I sit an hour or more at compute . Waiting to see 'Neuro' physio [June 16th!!].

[nutter in reply to flawlesssFayx]

Hi I am from Scotland Ayrshire I use a hoist. I am also right handed.

Got great support from family/friends

[flawlesssFayx in reply to nutter]

howlong have you had F.A? r u in a w.c /

[nutter in reply to flawlesssFayx]

i have had F A for 13 yrs in a wheelchair since i was 19 full time.

[DWalker]

Hi Louise

You may benefit from a postural management assessment ( includes sitting , lying and standing as appropriate ). It may be worth discussing with your wheelchair service - not all do these assessments . It sounds like you may benefit from special seating esp in your wheelchair to help manage your posture and minimise any further deterioration .

All the very best

God bless

Diana

[nutter in reply to DWalker]

Thanks 😀

[Aasia in reply to nutter]

Louise, have you tried hydrotherapy?

[nutter in reply to Aasia]

Hi when I was a teenager the Hydro pool was to hot and I get tired.

[Aasia in reply to nutter]

i see. may be trying it now will be different ?

[Cuds]

Hi Louise,

you definitely need to have a full postural assessment and review of your wheelchair. I think if you live in Ayrshire you may come under WESTMARC wheelchair services. Give them a call and ask them for a full review.

Good luck!