[Katherine]

That’s why I’m stocking up on toilet paper now

[Katherine]

Same.

The most important thing I took away was how to do a heel drop stretch (https://blackbeltwiki.com/heel-drop-stretch) for my calves. I used to have problems with foot drop (where your toes graze the floor mid-step), but after doing that stretch after my cardio every day for a few weeks, that doesn’t happen to me anymore.

[Katherine]

I like the idea of keeping a journal! I can see how tracking your symptoms is helpful when you’re trying out different interventions.

I’m a little wary of keeping a “fall log” specifically though – I don’t like going over things that went badly in my head, that just reinforces the neural patterns.

That’s one thing I wish my smartwatch would do automatically for me – I know some of the newer ones have “fall detection” features, but AFAICT the only way to use it is to have it call 911 whenever it detects a fall, which is NOT what I want. I just want it to count my falls for me.

[Katherine]

I’m lucky in that I _can_ work from home, but I don’t like it – walking to work and to lunch is usually a significant part of my daily exercise, and I’m still figuring out how to replace it. Also, I miss face-to-face socializing.

Still, if we had to get a mini-apocalypse this year, I’m glad we got one that involves just staying in your house. I’m pretty well-prepared for that.

[Katherine]

I was supposed to fly out to a hospital in another state for the initial screening visit for a clinical trial in mid-April. I haven’t heard yet that’s it’s cancelled, but I’m guessing it probably will be… and if not, I’m going to have to make a hard decision about whether it’s worth it to break quarantine fo a 50% chance at getting the real drug.

[Katherine]

I haven’t used a treadmill in years, because I’m afraid I’ll fall and hurt myself… I remember it being much harder than just walking outside, because you have to keep up with a specific pace.

[Katherine]

I get an echo every year, after which my cardiologist usually tells me “Yeah I can see some wall thickening, but it’s not bad enough that we have to do anything about it.” I assume that means there’s a possible result that would cause them to do something(???) to improve my life somehow.

Curious to hear if anyone has experience with their cadiologists doing anything beyond running tests.

[Katherine]

I love my fitbit! It keeps me honest about how much activity I’m getting during the day.

The only downside is that the default, pe-set goals don’t really work for me, because my physiology isn’t exactly normal. Does anyone know if there’s a group appropriate to ataxians?

[Katherine]

It is soooo hard to motivate myself to be active on my days off, because all I really want to do is sit at my computer all day. But I know if I do that, it will be harder to get moving the next day, so I try to schedule something to get me out of the house.

[Katherine]

I take:
CoQ10 (https://www.sciencedirect.com/science/article/abs/pii/S1567724907000670)
Acetyl-L-carnitine (https://link.springer.com/article/10.1007%2Fs00702-004-0216-x)
Reservatrol (https://www.ncbi.nlm.nih.gov/pubmed/25845763)
Sulphoraphane (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5666854/)
Vitamin E (for the heart)

[Katherine]

I don’t remember that well, because I was a child – my parents did most of the work. I think it took 1 or 2 years. I remember seeing two different neurologists. The first dismissed it as something about puberty. The second did a lot of blood tests – mostly for vitamin deficiencies, I think – before finally doing a genetic test for FA.

[Katherine]

Remember that needing a wheelchair is not the same as losing all your independence. Plenty of wheelchair uses lead full, independent lives. I follow a lot of disabled activists and artists on twitter to remind myself of this.

[Katherine]

My neurologist wants me to see her once a year, but… why, though? What am I supposed to be getting out of those visits?

[Katherine]

I take:
A multivitamin
CoQ10
Acetyl-l-carnetine
Reservatrol
Vitamin E
Sulforaphane
And sometimes vitamin D in winter, because I live up north and don’t get much sun.

And I don’t use a box, I just open 6 bottles every day and put the pill straight into my mouth. It seems like less work overall this way.

[Katherine]

I leave a podcast playing while I’m falling asleep – that helps keep my mind from fixating on whatever’s going on with my body. (Lately I’ve been enjoying 2.0 and If I Were You.)

[Katherine]

Pokemon Go

No, seriously. It motivates me to go on short walks during lunch or after work, playing the game involves some manual dexterity, and challenging myself to stand unsupported while playing is good practice in balancing-while-focusing-on-something-else.

[Katherine]

I wear friction socks – like these: https://www.amazon.com/gp/product/B07J9Q9YSG/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

You can’t wear them in the shower, but they might help the other times.

[Katherine]

I’ve considered it, but for me, not getting enough calories is a real risk, so I decided it wasn’t a worthwhile experiment for me. I’d be interested to hear if anyone else has tried it, though.

[Katherine]

Toph from Avatar
(I sometimes think of myself as a reverse-Toph, because I use my vision to compensate for not having feeling in my feet.)