Whew, how time flies. So I have now had my programmming twice. Thankfully we will be doing them every month now that I have met all my medical deductibles, so it doesn't cost 500 plus 40 office visit.now it's all covered, along with my botox injections (were 400-650 every 3 months)& my baclofen pump refills for my essential tremor (were 400-500 every 55 days).
So, yeah broke but the good side is no coughing up big bucks for 6 more months!
So, even before the 1st programmming,i had improvement just by having the leads placed & finally all the moraphine (from the pump)& hardcore break thru pain meds were officially out of my system &i need less oral so just the new found mental energy was amazing. But oddly, after the first programmming, though it helped my gait, wasn't working for me. It's weird but I was having a new kind of headache, aggression & my whole head felt very bruised. I lowered the stimulator (pace maker) for my dystonia side & the aggression went away right away! But of course lower setting, more dystonia.
As for the bruise & headache, well one day I just shut off the other stimulator & within 2 minutes the "bruised skin"& headache gone!
So finally saw my neuro 2 weeks ago & we went to setting B, raising the volts on the left machine & lowering volts on the rt.
My dystonia & tremors have been way worse, but it's texas, with the days temps avg 101-107. It's one of my biggest triggers, so home bound again.but with the new mental energy,i would dare to drive to sonic or a shop near by, then regret it. usually (before dbs) I would need to rest & do nothing the day before & after "an outing" just to recoup. It's like that now, except my thyroid is again so out of whack (graves-means it is way high & can't sleep, or way low & sleep way way tooooooooo much) that between that & the heat I am just trying to keep up with what my body is doing at any given moment.
But I see the neuro tue& can try to tweak the dbs for the heat at least!
I have been very busy when awake, just doing medical appeals, paperwork,& art stuff when I can.
One thing is my eyes are really bad & the dbs settings do seem to affect it as well, so hopefully when a good setting is found I will have to do a new eye exam.
I also have been busy preparing to "organize & run" the big event for the kids & teens for the symposium in chicago in august. There were & are alot of things I needed, so thats kept me busy.i am soooooo excited, I'm trying to keep it somewhat secret the cool plans I have laid out:)
And finally, the coolest thing is that I start my swim class tomorrow.it's a class at a "gym" but it's where you have to have a drs note to join,or do PT there etc. my muscles are so twisted & weak I am not doing the full gym thing yet.since my wiifit &i do fine working on balance,i think the swim class will be tough enough.it's a class for people with parkinsons or MS so it's really tailored for my needs, plus I am excited to work on meeting new people too. It's weird, if you know me I am very social, but being home bound almost two years after being at my job where talking is 90% of the day.well let's just say, the dogs haven't helped, ha !
Ok, as you can see from the post time my thyroid is super high, so I can't sleep a wink.
Soon,i will start posting more, updating the site & posting more videos:)
Happy day to everyone,
Raising DYSTONIA awareness, ONE person@a time!