[Grant Lile]

I have been using a wheelchair for about 20 years. Has anyone found progress with the medication where walking unaided is possible?

[Grant Lile]

I could be wrong but I think it’s available now at a ridiculous price. GoodRX has 90 capsules averagely priced at $38,000, from different pharmacies. If it is available there must be a way for patients to get a hold of medication.

[Grant Lile]

I’m looking into a therapist for my slurred speech, but am concerned it will never improve because of the Ataxia. I’m currently looking for copywriting work but can’t get through the interview process. So does a therapist help?

[Grant Lile]

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.

[Grant Lile]

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.

[Grant Lile]

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]

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.

[Grant Lile]

I’m not yet seeing a speech therapist, but have been considering it. I don’t know how much FA will restrict me from speaking perfectly again, but I’m thinking considerably better than right now.

I have also been looking into speech therapy programs for my computer. Has anyone got any suggestions?

[Grant Lile]

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.

[Grant Lile]

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.

[Grant Lile]

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]

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 brother’s dog on Monday. So I’ll see how it goes.

[Grant Lile]

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?

[Grant Lile]

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.

[Grant Lile]

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.

[Grant Lile]

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

[Grant Lile]

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

[Grant Lile]

I’m still struggling to find a way to get it. They shouldn’t make it so difficult for people who need it to get.

[Grant Lile]

Thank you for your service! Hoping for all the best for you from this medication. I’m still waiting to get started.

[Grant Lile]

Sounds very promising. I wish you both all the best! I hope the improvements keep coming.

I speak with my doctor on Friday.

[Grant Lile]

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.

[Grant Lile]

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 for 12-minutes for at least once a day, but have done it multiple times when needed.

[Grant Lile]

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 know if it helps anyone else with FA. I shake every day and I find it relaxing.

[Grant Lile]

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.