[Katherine]

AC and cold drinks

[Katherine]

I’m with Karina.  They’ve been trying to build hype about a lot of drugs for a long time, but nothing has come of any of them.  I refuse to get excited about anything until I can put it into my body.

I’ve decided to live the best life I can under the assumption that they’ll never find a cure.  If I’m wrong, I’ll be pleasantly surprised, but I’m not going to pin all my hopes on that.

[Katherine]

Acrylic nails?  whoevenhastimeforthat.gif

My partner makes fun of me for having “sixty million nail clippers lying around everywhere,” which is a slight exaggeration, I just want to have a pair within reach as often as possible, so that I can deal with hangnails right away.  They’re annoying!

[Katherine]

I have a Catrike Trail.  I initially got it with strap pedals, but my feet kept slipping out, so I replaced them with Heel Support Pedals from TerraTrike.  Clip pedals might have worked better, but I didn’t want to have to buy expensive shoes for that experiment.

[Katherine]

I just got my second Pfizer shot!  Getting out of bed was hard the next morning, I should have just taken the day off work.  But I was fine after 24 hours.

[Katherine]

Hi!  My left foot turns out a lot when I’m walking, and I feel like it makes my hip less stable.  How can I address that?

[Katherine]

What kind of gum do you chew?  I quit a few years ago because it was upsetting my digestion, but maybe I should put some effort into finding a type that agrees with me.

[Katherine]

Ugh, I hate that.  I mean, it’s fine when people ask if I need help, but when they ignore and push past my “no thanks,” I find that really threatening.  Usually raising my voice and saying “LET GO OF ME” makes them realize what they’re doing and back off.

[Katherine]

I’m coming at this from the opposite direction – when I was first diagnosed, I had a LOT of internalized ableism to deal with. For years, I didn’t want anything to do with the FA community, because I thought accepting my condition meant giving up on my life, because of ableist ideas of what disabled lives could be. Now I feel stupid for cutting myself off from a support system for so long.

[Katherine]

I’ve been keeping up with my normal exercise routine, but I still feel like I’ve lost a lot of muscle/endurance – I guess I was getting a lot of exercise by going places out of my house.

[Katherine]

Normally, I only have to go every few hours, but I’ve had a few of UTI’s in the past, and they make it much worse – maybe check with a doctor to make sure that’s not what’s going on with you?

[Katherine]

I’ve resolved to start going to bed earlier (like, by 10pm) but I keep waking up in the middle of the night with pins and needles, so I don’t actually feel more rested.

[Katherine]

I like Toeease yoga socks, but if it’s warm enough inside, I’m usually happier being barefoot – my feet have plenty of friction with the floor, and it makes it easy to do toe exercises while I’m waiting for web pages to load, or whatever.

[Katherine]

I keep a bottle of cold brew coffee next to my bed, so I can caffeinate before getting up.

I also use a space heater to keep my room really warm.

[Katherine]

I did a few sessions before the pandemic – I felt pretty good after, like after meditation. I might go back when things open up again.

[Katherine]

If the problem is recall, practicing explaining the concepts to someone else helps me.
If it’s about getting the information into your head, making the environment more interesting might help. Like, playing music, studying outside sometimes, highlighting all over your notes (if they’re physical) or changing the font (if digital)
Also, caffeine.

[Katherine]

I also hate vacuuming, but my absolute least favorite is moving dirty dishes from the table to the sink. I’m always afraid I’ll drop and break them!

[Katherine]

Definitely walking for me too – I feel like I would have a lot more energy if just moving around didn’t take so much effort.

[Katherine]

2-4 falls a week??? I fall more like 2-4 times a day. I usually think of it as not a big deal, if I land well and don’t hurt myself. It’s just part of how I move.

[Katherine]

I do some stretches in bed every morning – otherwise I get back pains that make it hard to get up. I have a few lying-down PT exercises, but my mattress is too squishy to make them really work. What do you do?

[Katherine]

Huh, I usually feel like my physical therapy is more of an exercise in concentration than a workout for my muscles. Like, it’s easy for me too generate raw power, I just have trouble moving with control.

But yeah, if I’m stressed or distracted, I have trouble focusing enough to get anything out of it. It’s not really helpful to try to just push through that – if I have time and spoons, I’ll try meditating to get myself in the right headspace, but depending on what else is going on in my life that I have to deal with, I might just give up for the day.

[Katherine]

I keep some emergency caffeine next to my bed, in case I wake up too tired to get to the kitchen but still need to start my day.

[Katherine]

So, FA is caused by too many GAA repeats, right? So it makes sense that snipping out the extra repeats would be easier than replacing the entire gene.

But it’s findings don’t seem as dramatic as the “rapid, complete reversal” described by this study about genre therapy https://friedreichsataxianews.com/2018/06/05/gene-therapy-fully-reverses-friedreichs-ataxia-changes-mouse-study/#:~:text=Gene%20Therapy%20Fully%20Reverses%20Friedreich's%20Ataxia%20Changes%20in%20Mouse%20Model%2C%20Study%20Shows&text=A%20gene%20therapy%20approach%20to,disease%2C%20a%20French%20study%20reports.

My understanding of the gene therapy approach is basically “engineer a virus to deliver a good frataxin gene directly into the nerve cells.” Whereas I think genre editing is more like “take out some blood cells, edit their frataxin genes, put them back, then hope the blood cells glomp onto nerve cells and give them their frataxin.” (Someone correct me if I misunderstood the paper, my degree is not in biology)

So… It sounds like the first thing would be more effective? Maybe? But time and science will tell.

[Katherine]

I love this idea! I feel like no one knows how (or tries that hard) to teach FAers how to work with their bodies. So if I try something new and am not immediately good at it, I get told that maybe it’s just not for me, I can never get any coaching on how to get better at it.

I’m having a hard time translating this into a specific question, but, it would be cool if you could share a story about how you became good at something, or how you found an activity that worked really well with your body, or something like that.