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Katherine replied to the topic Summer Heat in the forum Living with FA 1 year, 11 months ago
AC and cold drinks
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Katherine replied to the topic Reata Pharmaceuticals – Omaveloxolone Update #4 in the forum FA Research, Scientific News, & Clinical Trials 2 years ago
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’…[Read more]
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Katherine replied to the topic Hang nails in the forum Living with FA 2 years ago
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!
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Katherine replied to the topic Recumbent Trike in the forum Nutrition, Supplements, and Exercise 2 years ago
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.
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Katherine replied to the topic COVID19 Vaccine and FA in the forum Coronavirus (COVID-19) and FA 2 years ago
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.
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Katherine replied to the topic Physical activity questions in the forum Nutrition, Supplements, and Exercise 2 years ago
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?
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Katherine replied to the topic Chewing on gum, does it help? in the forum Living with FA 2 years, 1 month ago
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.
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Katherine replied to the topic When people ask if you need help in the forum Living with FA 2 years, 1 month ago
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.
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Katherine replied to the topic Addressing internalized ableism: a different perspective in the forum Living with FA 2 years, 3 months ago
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…[Read more]
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Katherine replied to the topic Physical health during lockdown in the forum Coronavirus (COVID-19) and FA 2 years, 3 months ago
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.
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Katherine replied to the topic Bathroom frequency in the forum Living with FA 2 years, 4 months ago
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?
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Katherine replied to the topic Sleeping pattern in the forum Living with FA 2 years, 4 months ago
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.
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Katherine replied to the topic Socks in the forum Living with FA 2 years, 4 months ago
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.
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Katherine replied to the topic Symptoms in the forum Living with FA 2 years, 5 months ago
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.
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Katherine replied to the topic Acupuncture in the forum Living with FA 2 years, 6 months ago
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.
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Katherine replied to the topic Staying focused in the forum Living with FA 2 years, 6 months ago
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)
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Katherine replied to the topic Upkeep around the house in the forum Living with FA 2 years, 7 months ago
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!
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Katherine replied to the topic What would you change? in the forum Living with FA 2 years, 8 months ago
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.
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Katherine replied to the topic Average of Falls in the forum Living with FA 2 years, 10 months ago
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.
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Katherine replied to the topic Working out in bed in the forum Nutrition, Supplements, and Exercise 2 years, 10 months ago
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?
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Hi Katherine! Are you still ambulatory (walking) or do you use a chair?