Fredriech's Ataxia confirmed

[1lazybug]

I just got diagnosed with Fredreich's Ataxia through genetic testing. Finally got answers!

Does anyone else have Fredriech's Ataxia? I am 38 but symptoms began 15 years ago. What can I expect? Anyone do therapy to help? I have lived with this for 15 years, and we'll just continue living life to the fullest, but at least now I actually have a name for everything!

[Sammy418]

Hi, my husband has had FA for 33 years, there are different degrees of the illness and it affects people differently. He started off walking with sticks, then went into a wheelchair. He worked up until 8 years ago, it’s only now that things are getting difficult. It has affected his speech and his heart, but he is checked by the JR at oxford yearly.

He is 55 now and had a intracural pump fitted 7 years ago which gives him baclofen (muscle relaxer) direct into his spine. This helps to stop muscle spams and stiffness. This has been a great help.

There is a lot of suppor5 out there the Ataxia society are great they can give you a lot of advise.

All the best

[Nigel-2112]

they diagnosed me with Fredreich's ataxia, at forty (twelve years ago) I walk using a rollator and try to keep active by go to the gym ever day. I find that physio helps and they point me in the right direction. Total agree with Sammy418 that the Ataxia society are great.

All the best

[maryrose46]

Hi, I’m now 52 and was diagnosed when I was 23. My eldest Sister also has it. . What can I say except you’ve got to do what you feel is right for you . I worked till about 6 years ago ( the last 5 part time) . I started using a rollator( couldn’t coordinate using sticks. Long trips etc I used a wheelchair and scooter. My scooter opened so many doors for me, after I got over the “embarrassment “. Being able to walk my son too school was one of the happiest experiences ever. I’m a upbeat and positive person, extremely grateful for my life and always count my blessings.

Don’t get me wrong I’d obviously rather not have FA but I have, so I get on with it best I can.

I now use a wheelchair .I don’t have any kind of help or visits to Drs etc. After my diagnosis I’ve just been left to get on with it.

Always happy to chat x

[12daisy]

Hi, I was diagnosed with FA in January 2018, I’m 39. I use a wheelchair outside now but not in my house. I’ve had many falls, broken bones, torn ligaments after that happened you learn to slow your walking down. I hold onto the walls and furniture now because they are more stable. The best thing I found for me is exercise, I go to the gym with my wheelchair, I hop

on and off all the equipment from my wheelchair. I have also bought a wobble cushion, hand held weights , resistance bands for when at home, this all helps me to keep my strength. I’m also a positive person, I go out on a weekly basis and get on with my life. I do go a ataxia support group, which is great.

All the best

[1lazybug in reply to 12daisy]

I use a rollater walker at home and a mobility scooter outside the home. Thanks for sharing the bit about exercising. It is somethingthat I want to add!