I'm learning every day what sets off a tremor or a spasm. And ironically, that changes. Usually, once I have established a certain move or issue that sets it off, it always sets it off. The change happens as the dystonia changes or progresses, I can add things to my list.
I know small things set it off like certain postures (as found out when it first started occurring). Another weird thing is long meetings. This is either as a bored participant or as the host. Towards the end of a long day of meetings, I will feel the tremor start to build and want to burst out. I think it must have something to do with the table height vs my left arm. And yes, I can often feel it building on the inside before it manifests outwardly. This gives me time to compensate if it is only minor. I host a meeting once a month that is all day long and I know by the last one, my head is drooping sideways and if I look up too much, it will start shaking. I avoid those tasks. I don't want it to interfere with the purpose of the meeting. Unfortunately, it can look like I'm avoiding eye contact. It is always a compromise. Other happenings were anything my body perceived as stress. I started a regular exercise program to strengthen what I had and my body was in shock. It let me know. Now, as I have pressed through and continued on, I now only set the tremors off about once a month during a workout unless it has too much shoulder and neck exercises.
The first time Craig saw the tremor in full blown mode was when I was surfing social media and saw from a Tulsa news station that one of my dearest friends had died. At first, I thought it was a joke. Why would she be on the news? I kept searching Facebook, went to her page, and saw the condolences pouring in. She had a heart attack at the young age of 38 and since she was a principal in the Tulsa area and it was a unexpected young death, it was news worthy. I started sobbing. I loved her lots and we talked often. In fact, we had been talking more since her school year was over and mine was winding down. I went to find Craig, who was outside. This is when I found out that when it is in full blown mode, I can't walk very coordinated. It is like the signals get crossed and I walk like a funky chicken. It is very jerky. As I'm trying to make it to the shop, Craig sees me, heads immediately my way, I can't talk as I'm sobbing and he looks at my phone that I'm holding up. He tries to console me, tries to hold me, but I'm jerking so bad, it's impossible to be effective. That was an eye opener for the both of us.
Stress (perceived or real): strong emotions of any kind (joy, anger, sad), long drives with holding my neck straight, turning my head too far to my left, reaching behind me or over my head for any reason with my left hand (jumping jacks, reaching in a cabinet, reaching for a pillow), sleeping on my left shoulder, putting my weight on my left side (like in side planks, alternating hand/leg raises, v-ups)...are known issues for now. I use some medications, and a neck brace/pillow to give me some relief. This won't always work, but for now, I'm grateful it helps.
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