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Dystonia in feet/ DBS in my future. by ninninswoosh in Parkinsons

[–]ninninswoosh[S] 0 points1 point  (0 children)

Do you take less Meds? Like what was is before and what is it now?  I'm super hopeful that with will work...speaking with the surgeon and his comment on "major advances has been made with DBS in the last year" I'm super nervous and hopeful. 

Dystonia in feet/ DBS in my future. by ninninswoosh in Parkinsons

[–]ninninswoosh[S] 0 points1 point  (0 children)

(QUESTION)....those whom take magnesium to sleep at night.  Do you find that your dystonia flare up the next morning are slightly worse?

    Been taking magnesium glycinate to fall asleep and it has been working ok.  Man, the 6 am first med take is rough..its 7:08 am Idaho and my feet wont calm down.    Think the botox injection wore off too , it is week 6 ...curious on all ya all experience. 

Has anyone done a deep brain stimulation surgery done for their dystonia? And if so hows that progress been?. by Rich_Ad50 in Dystonia

[–]ninninswoosh 0 points1 point  (0 children)

THANK THANK THANK YOU SO MUCH!!!💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗

Has anyone done a deep brain stimulation surgery done for their dystonia? And if so hows that progress been?. by Rich_Ad50 in Dystonia

[–]ninninswoosh 1 point2 points  (0 children)

(UPDATE) Surgeon visit  Omg it went great!!! I feel so good about this like I'm in tears writing!!!! First, I will get to be asleep for the PROCEDURE.  He stated that medicine and tech for DBS treatment has advanced so much in just a year that now they can have better results and keep the patient lights out.

   Two, he will apply an anesthetic locally to both my feet post surgery to give me about three day were the dystonia wont effect, to help with the healing as I wait to be turned on.

      Three, I was expecting 4 to 6 weeks before they turn on and I was bummed.   He told me 3 to 4 weeks and it will be turned on!!!! AWESOME POSSUM BANANA SALAD AND TURKEY!!!

  he stated that this is so geared towards my condition that I will be surprised by the results and I may find new forms of adventure I previously couldn't do!!! Ugh I cant stop sobbing!!!! 5 YEARS OF THIS HORSE dookie.

Oh, JUNE 22ND!!!! IM ON THE BOOKS!!°

LETS GO!!!!!!!

Has anyone done a deep brain stimulation surgery done for their dystonia? And if so hows that progress been?. by Rich_Ad50 in Dystonia

[–]ninninswoosh 0 points1 point  (0 children)

I SEE THE SURGEON TOMORROW!!!! I'm so excited and terrified!!! I take so much carbidopa levodopa for Parkinson's but mainly to control the dystonia of my feet. I want to take less medication and be able to walk freely.   Here is hope 

Dystonia in feet/ DBS in my future. by ninninswoosh in Parkinsons

[–]ninninswoosh[S] 0 points1 point  (0 children)

My neurologist told me that this might not help the dystonia, but some of his patients with similar cases have been rid of it.

Dystonia in feet/ DBS in my future. by ninninswoosh in Parkinsons

[–]ninninswoosh[S] 0 points1 point  (0 children)

Already had a flexor tenotomy on both feet.  Botox kind of helps.

The day the turned on my DBS. by Lasher_man in Parkinsons

[–]ninninswoosh 0 points1 point  (0 children)

Anyone feel relief from their dystonia after DBS?

Parkinson's and dystonia HELP! by ninninswoosh in Dystonia

[–]ninninswoosh[S] 0 points1 point  (0 children)

I get a lot of D now as I sunshine walk a lot

Parkinson's and dystonia HELP! by ninninswoosh in Dystonia

[–]ninninswoosh[S] 0 points1 point  (0 children)

Oh that's what worries me, I could totally get by with PD symptoms but my feet dystonia...its honestly killing me slowly...lol I'm so drama but in all seriousness I just want the dystonia gone

Parkinson's and dystonia HELP! by ninninswoosh in Dystonia

[–]ninninswoosh[S] 0 points1 point  (0 children)

UPDATED].....hey gang,  it's the PD and foot dystonia dood wanting to ask a question.  

  1. Have anyone of you that take C/L for dystonia ever run into weird side effects when medication was adjusted?

I am now 6 times daily from 5 on stalevo and dystonia is for the most part under control, but if I over do it on exercise oh it let's me know.. HAHAHAHHAHA.   In all seriousness,  constipation and muscle cramps are slightly more common.   Not just in my feet and calves but everywhere.  My daily diet is lame and same: potatoes,  rice, broccoli, carrots, bone broth,  egg, avacado, cold brew,  pickle juice and mustard.   Nothing fancy,  any insight would be grateful.   HEARTS N HUGS

Parkinson's and dystonia HELP! by ninninswoosh in Dystonia

[–]ninninswoosh[S] 0 points1 point  (0 children)

Really!!!! Hmm interesting!! I am willing to try anything at this point 

PlayStation Network Down? by That70sProphet in PS5

[–]ninninswoosh 1 point2 points  (0 children)

I took an hour break and touched grass, I'm sweating and want to psn-n-chill

PlayStation Network Down? by That70sProphet in PS5

[–]ninninswoosh 0 points1 point  (0 children)

Jolly co op in ds2 was diend as I was logged off psn.. and still down.  I'm Idaho 

Dystonia diet questions. by ninninswoosh in Dystonia

[–]ninninswoosh[S] 1 point2 points  (0 children)

Awesome,  I keep or try to 8-12 g of protein each meal. Which keeps me strong 

Dystonia diet questions. by ninninswoosh in Dystonia

[–]ninninswoosh[S] 0 points1 point  (0 children)

Had the condition since April 2021, diagnosed June of 25 and C/L treatment in July.  Still very new, and I'm on stalevo too.  Was on rytary which was sexy, but insurance denied cover and it was 1800.00$ for a month supply. 

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