#81: Roz's Deep Brain Stimulation (DBS) surgery 1 year later

[@denniskaras3120]

Great episode and interview. Roz, thank you for sharing your experience.

[@chrisc9259]

Good to see you Roz! Looking good. Hope you get some answers. My biggest set back has been my speech. You all gave me an idea about talking to my Boston Scientific contact. Can't hurt to ask some questions. I'm looking/researching for a new programmer too. Here's to hoping!😊

[@ElderGeekGamer]

What a great interview. Thanks to Roz for updating us! My DBS surgery was completed August 16th 2023. We're working on reducing the tremors on my left side and so far it's going pretty well. I agree totally that emotions override our DBS or make our symptoms worse whether we have DBS or not. Like Roz I fell down our stairs a couple of weeks ago temporarily derailing my progress. I was sabotaged by my cat who left a dog toy on our uncarpeted steps. We'll see how it goes. Keep us updated and thanks Roz!

[@mariagardner2758]

Thank you so much for sharing your story!

[@sharoncribbs7516]

Great info. Thanks for sharing your story Roz.

[@cherylginsburg-smith3375]

Good morning Brian! Did you have somebody at your house to help you After each of your surgeries? Has your vision gotten worse since the surgery and how about your speech… My 1st scheduled surgery is January 10… I'll be staying in Florida with my husband at a hotel at least once every two weeks.... otherwise I may be alone and wondering how that Will be. Ps: What about depression and anxiety ? any better or worse? Thank you for your time , it is much appreciated --cheryl!

[@eithneodriscoll7528]

I feel like I am not in control of my body when I am in a stressful situation. My body just reacts to it and when I meet other people with Parkinson’s I feed off of it and all my symptoms get worse

[@LynelWelvaert]

My DBS was completed on June 19th. When it was turned on it was too high. My Neurologist just turned it down to .5 & I'm okay. Speech is better & I haven't fell. I love my DBS now!

[@laggerb4680]

Anxiety/being keyed-up brings on bodily tension. I just finished DBS surgery & next week will get programmed. The surgery itself has changed my fatigue which is now a sleepy, lightheadedness. Before it was bodily & always on edge without any need to sleep. (79 yr old female. Symptoms for about 2 yrs. Device: Boston Scientific)

[@thesecretlifeofparkinsons]

I hope the programming goes well. I heard it's a work in progress so you have to be patient (so I've been told)

[@laggerb4680]

@@thesecretlifeofparkinsons thank you. Yes it’s been a long time in coming as my symptoms keep escalating

[@dep7361]

In December 2019, OSU Wexner Medical Center implanted Boston Scientific. In August 2024, Dr. Patel, MD with Greg of B.S. adjusted the Amplitudes up.3 to have a stronger right leg step out. Now, in November, I feel so much stronger with minimal gait freezing.

[@thesecretlifeofparkinsons]

That's awesome! Did you suffer from freezing of gait before DBS, or was it mostly shuffling gait? Just curiuos.

[@dep7361]

@ No, Elaine had her DBS implant because of hand tremors. In 2024, her gait freezing became more predominant causing five major falling episodes causing fractures. In August, Dr. Patel increased the amplitudes to strengthen her right leg.

[@Anthony99355]

Did you have freezing gate? If so did it go away with DBS? Also, does DBS get rid of leg tremors?

[@thesecretlifeofparkinsons]

I’m speaking for Roz here…she did not have freezing of gait. I’m not sure if DBS helps with that. I’d have to research it. But yes, I heard it does get rid of tremors.

[@Anthony99355]

Thank you

[@chrisc9259]

From what i've asked my neurologist MDS and personal experience of DBS, nothing for freezing of gait and balance with DBS. Exercise and some tips from Physical Therapy have made it mostly controllable for my freezing and balance. Still have bouts but way better.

[@cherylginsburg-smith3375]

The first surgery was. Fantastic iwsable to talk..i felt do far away from the pd crowd…then things went south..the dr hit a went south, th ed.the dr hit a vessel..which led to seizures. A. Craniotomy then, one month coma & stroke..Oy! Just dealing with recovery re roz…maybe a mother=surgeryt0repllace the target spots? spots?

[@richardgonick931]

Talking about trauma to recently diagnosed. After Parkinson’s confirmation last January 2023. I was then , on May 6th2023, with prostrate cancer.

[@sanamite]

Gosh.. I'm sorry for you, truly. Checking in on you, how are you dealing with this ?