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Yes. I've been symptomatic for a year, and have really learned to embrace the word JOMO for 2022. Although, since having my left arm raised to touch the face really helps me, I've discovered that eating a sucker when I need to go out in public REALLY helps me to relax, spasm with less frequency and intensity, and look more normal. These ones are expensive, and aren't particularly long-lasting, but are sugar free- https://www.amazon.com/gp/product/B0198DHO76
It’s probably going to be a lot of trial and error. Has he ever tried a track ball mouse like this: https://www.amazon.com/gp/aw/d/B01936N73I/?_encoding=UTF8&pd_rd_plhdr=t&aaxitk=de428092487f481b8a58e3baf9d66528&hsa_cr_id=7322648830001&ref_=sbx_be_s_sparkle_scm_asin_0_img&pd_rd_w=FK1JL&pf_rd_p=22aaccd3-32f1-4e8a-8b82-4957...
If you can, I’d also suggest using voice control tech. Apple devices have voice control accessibility features.
For keypads you could try something like this:
What kind of support therapies do you have available in terms of pain management or medications?
I have some kind of combo severe focal dystonia in my feet and also restless leg, and these help me to prevent it too badly at night and make it less bad during the day. I don't know if these are practical for hands, but I have hand pain and alignment issues so I'll mention subs of my hand things.
magnesium foam https://www.amazon.com/dp/B08QPTNTQ5/ref=cm_sw_r_cp_apa_glt_fabc_SA06DBQJFKJBZMKKADQ0?_encoding=UTF8&psc=1
Baths with Epsom salts. (Also magnesium). I haven't been able to do these lately but they used to really help.
Pool or hot tub - I'm hoping your college might have one close to you? Leaving your hands and arms in front of warm jets for a while to over-stimulate your muscles may really help. It's the only way I can stop the severe curling before bed.
Neurologically based muscle relaxers. I don't know if this helps hands or might cause other issues with grip, but Baclofen is essential for me.
Diclofenac patches. These maybe aren't as great for dystonia but they help with my inflammation, a lot of which has a different connective tissue root cause with me, but the dystonia makes my inflammation worse.
Requip, or ropinerole. This drug is used for RLS and Parkinson's, it helps me during the day with my dystonia, I don't curl my feet as much while sitting at my desk and working. But it's hard for me to sometimes separate dystonia from restless leg, or if the ropinerole is helping as much as the Baclofen.
Ice mitts, big time. BIG TIME
Hi, Jules_lab. You are awesome for researching for others. I've tried every supplement under the sun, and stop taking most of them when the bottle runs out. Magnesium is one that I keep up on. It doesn't help with the cervical dystonia a ton, but it makes a huge difference on the secondary effects that dystonia anxiety has had on my digestion and sleep. Fwiw, I take three of these in the morning, and a 250 mg tablet of chelated magnesium before bed.
OH MY GOD! This is such a problem for me too. My bigger problem is the age old question of "did I remember to take my pill? or if I take it will be it be that I'm taking a second one because I took it and forgot that I took it?"
I use a day of the week pillbox for morning and bedtime pills that I keep in my bathroom. I pretty much never forget to take them.
I have this tiny little pill box I keep in my purse that is divided into sections. This is the one I bought: https://www.amazon.com/gp/product/B07KJ8QXBP/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
I cut up a piece of washcloth and glued it to the top part of the inside of the box so the pills would stay in their proper locations.
I put 2 pills in each section, my afternoon and my evening pills for each day (and I just wrote S, M, T, W, Th, F, S in the sections). The afternoon one I usually remember, and the evening one I have an alarm for. But at least with the little sections, I can look at the pill box and see if I remembered to take it.
Though on Monday I thought I hadn't taken my evening pill and I looked in the pillbox and there was only one in there for Tuesday. So I mixed up something or dropped some the last time I opened it. I have no idea. Luckily, it's not a drug you can easily OD on and if I took it twice by mistake then worst case scenario is I would be sleepy or relaxed.
It makes me feel so dumb that I can't remember to take a pill 3x a day and that every now and again I mix stuff up (like once I took a second dose of my night pills in the morning, and didn't take my morning pill). I'm not really old and I don't have dementia or anything. I'm generally really on top of my shit and even pretty high strung and overly detail-oriented. But I just can't get the pills right all the time. It makes me insane.
My wife and I both have cervical dystonia. May I suggest that you look into splint therapy, not the kind practiced by most dentists. If the rear molars are not indexed properly the jaw will slip back and put pressure on the trigeminal nerve which controls your jaw and your eyelids. My wife was blind for five months from blephorspasms which is very similar to your situation only obviously her eyes were affected due to the area of pressure by the jaw on the trigeminal nerve. A flat plain splint with about 4 mm of lift restored her vision in a couple of months, NO BOTOX. I use a similar splint, along with stretches and a class 4 cold laser to manage my dystonia.
If your doctors are ignorant as most are, here's a link to a text book on the subject, and yes our dentist is one of the authors.
https://www.amazon.com/gp/product/B07KDJ4DP8/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1