Something weird happened last night. I had 8 + hours of sleep. My neurologist and programmer for my DBS said increased sleeping times can be improved by the surgery at my programming session last week, but i never expected this. Hope the improved sleep length continues.

I have had unfortunate side effects with my legs but have been told these can be adjusted at future programing sessions.

Fingers crossed.

14 Replies

  • Good luck with everything, I will live or should I say sleep vicariously through you!! Hope that made you laugh!!

  • Very funny :-) don't go sleeping through me vicariously, last night was not much better than normal however I did not take my Flomax so was up several times going to the bathroom. Will see how tonight goes. I'll let you know if you can start again.

  • I'm curious, I noticed you're from Colorado--do you know anything about the dbs center at Englewood? I can't think of the name of it right now but the person who works with dbs is named Sierra. I have had dbs also, not a lot of help as of yet.

  • see below about

    Sierra's info

  • what were your leg issues. One of my issues that has arisen since the surgery is difficulty walking.

  • i had trouble walking too, although i didn't have DBS . i have psoriasis in the back and sciatica in my legs.

    i was sent to a PT to straighten me up. and learn how to walk right. when ever the pain starts i know that i'm walking wrong, and have to go back to my therapy sessions, and what i learned. and then it feels a heck of a lot better. i didn't say it was easy, but it does work. i used to have such pain walking, that i didn't know if i would get back in the house. today i made it back with no problems.

  • My issue is my right leg and foot wandering off on its own. Basically it's dyskinesia & very annoying when I try to drive. However we are working on fixing this with further programming; I would recommend a visit to my programmer Sierra Farris. They do a lot of rescue programming to help people. Sierra Farris is the PA who is doing my programming and Dr. Giroux is a neurologist. I recommend them both highly.

  • I have been thinking about going to her movement disorder center to tune up my dbs--I have dystonia mainly in my left leg. I don't know if this is common in PD or not. But you think it's a good place to go?? I live in Idaho, so it's a bit of travel.

  • Hi ancee, I live in Utah & I'm wondering if you tried SLC? I'm thinking about DBS Are you glad you had it done?

  • I had my dbs there at University of Utah . Very good team -- surgery went very smoothly. My problem is dystonia, so my dbs was the gpi instead of the stn which is easier to get results. I think I just need someone who can work with me until we get the "sweet spot" on my settings. I would do it again, because that was the best hope of prolonging the inevitable, What are your symtoms?

  • Hi ancee, sorry it's taken so long to respond & thank you for your response. I don't know the meaning of either gpi or stn?

    My symptoms are mainly on the right side with my leg & arm in a lot of pain. My foot & hand go into claw mode when my meds wear off. I have tremors on both sides & dystonia. I also have insomnia, constipation & I am always tired. I get dizzy a lot & I have low BP. I was diagnosed about 2010, when I was 55.

    My Mom had PD and died at 75. She started to show signs of PD but we didn't think she had it, but now I know she did but she also had several small strokes.

    If I knew then what I know now, I would do things differently.

  • I have had Dbs and have also been on 14mg of Ropinerol xl, which I have weaned myself off over the past 2 months, I am now sleeping very well, best since I have had PD (10 years). still on rasalagiline and sinemet.

    However since DBS my balance and walking have got a lot worse, how aare you suffering with your legs?

  • Sierra has helped with leg weakness. walking on the outside of my foot. almost dialed in. Maybe one more session. improved my balance. she is amazing.

  • Well worth the travel. I'm sure they can help. Call for appointment first

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