Do you drive while living with FA?

[Cathy]

I haven’t driven in about a year. With me, I notice a delayed reaction time and difficulty coordinating my hands, feet, vision etc… So I felt out of control in some situations when I was driving. I’ve thought about hand controls but my hands do odd things pretty often and that’s scary and uncomfortable. Also getting my folding walker out of the back is hard. I’ve tried all kinds of techniques and I can do it, but it’s so stressful and tiring that I don’t do it anymore. When I go food shopping for instance, my husband drives, parks in a handicapped space, gets a cart for me and I use the cart as a walker (essentially) I’m super slow and it’s tiring but being upright (for as long as is possible) and involved in finding sales, making the list etc… makes me feel like I have some control over my life.

[Christina]

Hi Cathy!

I have never driven, so the thought of hand controls intimidate me as well due to the loss of coordination and not being able to control it.

My husband drives me around too and we always park in a handicap parking spot for shorter distances. Was it a tough process to get your handicap parking placard?

-Christina

[Cathy]

Hey Christina,

I’m in Oregon and my doctor filled out a form that I either mailed in or brought to the DMV (I can’t remember which) and the placard came in the mail. I renewed it through the mail. It was super easy! We almost always use it. At the moment Klamath Falls is small enough that we can usually get close parking if we go out to eat or to a play etc… I think this town is very handicap friendly and people are very nice and accommodating.

I’ve been wondering about how Skyclaris is working for most people. I’m nervous about the liver issues/ heart issues and how much it might slow progression. My neurologist went through a bunch of hoops to get me a prescription but I haven’t taken it yet. My FA has been slow to progress in general.

Thanks-Cathy

[Christina]

Hi Cathy!

I am glad that you had a seamless process getting your parking placard! I am also happy to hear that you live in such an accessible area! I’m sure that puts your mind at ease when you and your husband are out and about!

Skyclarys has been helping me and most people I know. It will be 2 years, this July that I have been on it and I have only seen improvements. If you are worried about liver and hear issues, blood tests and your neurologist will determine the safety and intake of the drug!

-Christina

[n6te088]

Thanks for sharing this, Christina. Hearing that Skyclarys has worked well for you gives me hope. I’ve been hesitant too, but knowing regular testing can monitor side effects makes it feel more manageable.

[Christina]

Nate, I can confidently say it is manageable after being on the drug for almost 2 years! Please keep us posted with your journey!