Focal Dystonia: What Helps

I've written several times here about my focal dystonia. It's been a long journey, and one I am beginning to realize will never be over, save the Lord miraculously healing me. To be honest, the condition seems to be worsening again, but after working for nearly a year to build back the muscle lost to atrophy from getting botox, I'm focusing on finding any way I can to avoid that again.

What I've Tried:

• Avoiding crochet: I tried this for a year, thinking if I gave the repetitive motion a break, maybe my hand would get better. It didn't.
• A low-salt diet: I thought that lower salt might reduce inflammation, but it didn't seem to help, and I like my salt! So I went back to trying to eat moderately and not avoidantly.
• Botox: I already mentioned this, but it caused major atrophy of my arm and extreme weakness that I am still trying to overcome. The doctor said that botox will always cause atrophy, but that the last amount I received was enough for someone with an arm the size of my leg. Go figure!

What's Helped:

• Using an ergonomic crochet hook: This has allowed me to enjoy crocheting again. I still cannot crochet as long or as often as I like, but at least I can do something. The "fatter" handle makes the hook easier to grasp and helps reduce the dystonic clenching that happens.
• Physical therapy: This helped me recognize how the dystonia was affecting my whole body. It has helped me work on my posture and make other corrections to prevent and treat the neck and shoulder pain that come from the dsytonic contractions. It also gave me a home strengthening routine that has helped me rebuild my muscle. I'm on round three of the eight week program and have gained about three quarters of an inch of muscle back in my right forearm, which tells you how much I'd lost.
• Occupational therapy: This added to my physical therapy routine and gave me some ideas about the process behind the dsytonia. My therapist also recommended some special writing implements and other assistive devices for use when my hand is bothering me. One is the Pen-Again, which is an alternate grip pen that again reduces the clenching action I have with the dystonia.
• Oval-8 finger splints: The occupational therapist recommended these, and I think they help sometimes. They are supposed to stop hyperextension, but the therapist said they also might add sensory input. Whatever. If I'm having a hard day typing, I try them. They at least look cool (or so my kids say!)
• Changing my routine: The truth is, my life isn't the same as before dystonia, which means I have to do things differently. This means I don't play piano as much, or much at all. I use my left hand more. I have to remember to hold onto things strongly with my right hand. I use a stand-up desk at work to relieve shoulder tension. I try to break up typing into shorter periods. I stretch a lot.
• Acceptance: The mental aspect of dystonia is part of the struggle. I fought my diagnosis and its permanency for quite some time. I wanted to find an answer, a solution, but there isn't one right now. So I am trying to accept my condition and give thanks to God for what I can do. And little things like painting my nails helps me remember to do that.

Dsytonia is not a condition I would wish on anybody, but it's my reality, and by God's grace, I'm learning to cope with it.