My wife and I are both having Dystonia issues, I mean more than normal! Robyn much worse than me, she had Botox last but her back is constantly sore and she is in serious pain all the time. She is contemplating trying the drug Neurontin for some more relief. Her head, which she can normally hold still with some effort, has become too much and started to turn and go back. So much so that she even broke down and wore her soft collar neck brace at work yesterday. She NEVER wears this in public.
It is ironic because I desperately want off Neurontin as well as Klonopin. I normally take 1 pill of each with or just after breakfast, yesterday I tried no pills and I didn't really notice any difference until the evening when we went out. Then it was more difficult to speak and I was jittery but there was something else, I don't know how to describe it, like there were voices in my head or more static really. When I would talk with someone it was like the voice was saying, "don't make of fool of yourself, get out of this conversation before you look like an fool." Instead of being even remotely focused on the other person it was all about me, trying to appear as normal as possible. I couldn't relax and have an enjoyable talk with someone I didn't know. Luckily my family was there and I could focus on them. This solved 2 problems, I was able to focus on them and take care of what they wanted while also keeping me occupied so I wouldn't have to have adult conversation. I am also up too high with the voltage on my DBS, I need to see my dr. and get back to where I was before the last adjustment.
Training: I ran 5 miles hard Monday night, felt great finished in a very respectable time for me, 34 minutes. Since I was going to miss the group workout I tried taking the kids to a local school that has a play area right next to the track. I planned on doing 6 1000's, 2 and a half laps each. I skipped the two mile warmup opting for 2 laps instead. Was shooting for under 4 minutes for each 1000. I did the first one in 3:43, I was stunned, but also a little concerned because I had 5 left and knew I couldn't repeat that 6 times. I fell back on #2 to 3:48, probably where I should have been at for #1. It was hot and humid and I had to stop at 5 with no 2 mile cooldown. I will have to make that up Thursday. I shouldn't have run so hard the night before.
I love my wife! Despite all her pain and head movements she is repainting our bedroom ceiling. After I ran yesterday I scraped some more of the old popcorn ceiling off and there was just a little bit left that I couldn't remove. She pushes it hard all the time and wants everything to be perfect by Saturday. We are hosting a family function with relatives from Chicago and New Jersey along with my parents and grandparents. Bless her heart!
Quote of the Day: "Love is everything it's cracked up to be. . . It really is worth fighting for, being brave for, risking everything for. " - Erica Jong
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Wow Brian, you & Robyn both inspire me. I'm sure you inspire others to never give up also. Did you try to take a day off of meds w/ Dr's ok? Thats weird you were getting voices in head. Are u back on them? It would be nice to be off of drugs, but look how they have helped us. Klonopin has been my miracle. I'm only on .o5 which I take 3x a day. That has to be awful for Robyn. Did things just all the sudden get worse for her, and yet she still has the ambition to paont. Wow - talk about an amazing couple you two are!!
ReplyDeleteHang tough. I love your love quote.
Joey
I went off the drugs on my own volition and only for a day, back on now. I really should have triend to taper them down when I was laid off. I may try that next year either on Sprng break if I get a week off or in July when I get 2 weeks off.
ReplyDeleteRobyn's seems to be progressing and causing her incredible pain. Not sudden but slowly creeping down her back.