• Thanks for the reply Terence. I’m in contact with my neurologist and genetic practitioner to get some clarification with my case. I’m just concerned at how quickly my body has deteriorated since being diagnosed.

  • Thanks Isabella and Christina D.  My neurologist has suggested genetic testing with someone else or be a lab rat again and go to the Mayo Clinic where I will probed and prodded by them.

  • So I was diagnosed with Freidriech’s Ataxia (FA) from genetic testing and have just gone along with. But lately, I have been finding some of the symptoms I supposed have been getting I have not. This questions the results I got from the genetic testing. Did they get it wrong? I had my parents tested, and neither one have the gene that is s…[Read more]

  • As I feel as though my body is deteriorating at faster rate than it should be, I have been finding it difficult to stay in a positive mood. To help, I look at things in my life I can still do and what brings me joy.

  • I enjoy getting on a cushioned lounger outside and reading, when it’s not too hot & humid. If I happen to doze off then my body must need it.

  • Grant Lile replied to the topic Pets in the forum Relationships & FA 6 months, 3 weeks ago

    Sorry for this late reply.

    Looking after my brother’s Giant Poodle for the weekend was tiresome! Bad enough being fatigued easily when doing small chores, but throwing in caring for a dog made me fatigued more. A well behaved and good dog, but not for me. I think I may go for cat or an aquarium.

  • Dobrinka, I apologize for the late reply. I never received a notification that I had a message waiting for a reply. I was not intending to be rude.

    According to the Pilates instructor I got mine from, a 12-minute shake is like doing a full body Pilates work out. For me, I’ve found it helps relax joints and muscles when they feel tight I shake f…[Read more]

  • Chris, I apologize for the late reply. I never received a notification that I had a message waiting for a reply. I was not intending to be rude.

    According to the Pilates instructor I got mine from, a 12-minute shake is like doing a full body Pilates work out. For me, I’ve found it helps relax joints and muscles when they feel tight I don’t kno…[Read more]

  • Isabelle, I apologize for the late reply. I never received a notification that I had a message waiting for a reply. It was not intending to be rude.

    According to the Pilates instructor I got mine from, a 12-minute shake is like doing a full body work out. For me, I’ve found it helps relax joints and muscles when they feel tight.

  • I went with the one and done J&J vaccine. Two days after I got it, there was problems with it, that it may cause blood clots. Touch wood, I haven’t had any problems related to the shot.

  • Thanks for the replies. I’m glad to hear that I’m not the only one going through this. I mean I’m  not happy that anyone has to go through this issue, but it is reassuring that others have it and there is help available.

  • For the last couple of months, I have found my quad muscles working when I’m not wanting them to be working. I could be watching a movie and can’t really relax, because my legs are wanting to extend.

    Does anyone else have this problem? Is there medication that can help?

  • Grant Lile replied to the topic Video games in the forum Living with FA 9 months, 2 weeks ago

    I don’t have a console, but am thinking of getting one. I have read playing action-type games can help with coordination. Does anyone know what type of console is best for hand controlling?

  • Grant Lile replied to the topic Pets in the forum Relationships & FA 10 months ago

    Thanks for the advice Christina and Karina. A few pros and cons to think about. The main issue I have is where I live. I live on a golf course. So a dog would always have to be on a leash when outside. With a cat, I’d be constantly worried about the foxes I’ve seen in the early mornings or the odd hawk seeking its prey. I’m looking after my broth…[Read more]

  • Grant Lile replied to the topic Pets in the forum Relationships & FA 10 months ago

    I don’t have any pets at the moment, but have been thinking getting one. I have been interested in a puppy/dog, but like Christina has found, I’m worried I’ll find it overwhelming. I’m thinking maybe a cat? I am single and live alone, so I am looking for some company. Any suggestions?

  • My preference is a manual wheelchair. I find it easier to get in position for transfers. And it makes for a good work out on my arms.

  • I don’t if it’s because of FA, but I’m finding my bowel movements are not as regular as they used to be. Is anyone else having the same issue? If so, do you have suggestions for regular movements?

  • I give my toes and ankles a good stretch in the mornings and before I go to sleep. In the mornings in bed, I roll on to my stomach and push up on my elbows to give my back a good stretch.

  • I recently bought the Jay Fusion wheelchair seat cushion and couldn’t be happier. It’s part air and part foam and is around 4.5 inches thickness for much comfort. Everyone is different, but I find this cushion helps me sit with better posture and hardly any sliding, like my old one did. W

  • Happy Thanksgiving! I hope everyone is having a fun and festive day!

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