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Showing posts with label Psychogenic Myoclonus. Show all posts
Showing posts with label Psychogenic Myoclonus. Show all posts

Tuesday, September 02, 2025

Okay

The ROMTech rep came mostly without a hitch [although she did accidentally bring another bike], with the excption of the escape artist dog, who managed to get through a mostly closed door (which goes in, so in theory, barricaded them in), plus a dog gate, just as she was coming through the door to greet her, but fortunately she was nonplussed by him, as he is very friendly and I kept him from jumping up more than the one attempt. She reset the program, and we talked a bit, and then she left. The nice thing is that now I don't have to get on the bike again until Friday.

I'd already made coffee and fed the animals, made my bed,  made my to-do list, gotten dressed, etc. I was hurting a bit, so I took my morning meds, including the Tylenol. I've already attempted to wake my roommate once, but it looks like I'll have to do it again. We need to do some bills before I go tomorrow. I need to do some laundry today: my clothes, my bedclothes, and anything he might have. I have PT as well. I'll need to water the plants. I didn't manage to do that last time, and they languished another week and a half while I recovered to the point I could. I need to get the walker out to a more accessible place. I called about a debt, and I need to update that file and print it for my friend so he has all the necessary contact numbers and information in case anything happens to me. Again, just being practical. Then that'll be done.

I'm feeling pretty rested. I'm not experiencing many tics. I don't feel very anxious, as confirmed by my watch. I think I've got this.



Saturday, August 02, 2025

Update

Hey, guys, I just wanted to provide an update since I've managed to give almost no one any information about my surgery or its outcome, and I'm very sorry about that. First of all let me explain why you haven't heard anything.

Back in May, I had an event at work where I had sudden myoclonic tics/spasms come up that caused involuntary movement in my arms and legs. They are always there a bit, just like my familial essential tremor (I think I get that from my grandfather; his hands shook, too, so much later in life he couldn't hold a coffee cup without spilling it). Anyway, it was a little alarming at this went far more than a bit of a shaky thumb. My neurologist put me through a series of tests, including an EEG and a brain MRI to rule out things like epilepsy, multiple sclerosis, brain tumour, etc., and those all came out fine, so it went down as a myoclonus brought on by lack of sleep and stress. He upped my essential tremor medicine (a seizure med called topiramate) yet again, and it went to its current norm. But in the days of preparing for the surgery I got about 3-4 hours at the most sleep (not much than my norm, but still worse). On the night before, I got maybe one hour. So from the time I woke up to about noon yesterday, I had this thing I get where if I try to text or use a phone I 'double-tap' everything. Even after that, texting is hard and frustrating. And I tried the microphone. It was frustrating, because I'd still have to go back and correct on the phone. I meant to get on the computer once I got home, but it's taken a bit to get settled...so. I had a person to call a couple of friends, and he did, but didn't get through, so that didn't work, either. 🙁

Surgery went fine. There was no lengthy pre-op, even like you have with a colonoscopy or so. I just got dressed and had a quick word with providers, my friend, and then went on to the OR for my spinal. That's the last thing I remember before being in my room. I really must praise the staff at Baptist...not only were they very nice and professional, they apparently dealt with a difficult patient. I have been told that from the time I came to-I don't remember most of this, I wasn't really completely with it- I expressed my anxiety by trying to control the situation by ordering everyone including the staff and my friends (one of which is a trained CNA who worked Ortho/Neuro albeit 40 years ago, but knows a lot about patient care). I do not remember this, but I can certainly believe it. Whenever we feel anxiety, there is a need to control our environment. I am so going to have to answer this Press Ganey survey. I will say I sleep so much and better than I have in two years while I was there.

I walked all around the nurse's station with the walker the first day, and halfway to the PT gym the first day, did the same stair practice I'd done at the prehab, and felt fairly confident.

We got in the house with a few bumps, It was so good to be home!!!! Thank you Brenda Evans for all the shifting of schedules back and forth since the times were so uncertain. I really appreciate your help.

Yesterday I went to my first outside PT. I did make a mistake going down the stairs and jarred things a bit but didn't fall, it just hurt a bit. I had a great PT session and was able to reach 2% (they want 0% extension) and 73° angle bent knee heading toward a goal of 90°, which he said was really good for 2 days post op. Dr. Talwalkar also called me last night and he was very pleased. He's got an excellent manner about him, like you're talking with an old friend. He was also happy with those progress numbers.

Which reminds me, I'm go to go work on the new-fangled range-of-motion machine they have for me to do five times a day to help with that.