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Del

My bother-in-law is considering DBS. He is 12 years or so into PD and medication doesn't give him many good hours anymore. His doctor has told him DBS is is best hope to improve his life. As you can imagine, he is very scared and somewhat reluctant to proceed. I'm trying to help him with investigation of the process, problems, realistic expectations, etc. Found your blog helpful. Keep writing and good luck with the coming weeks of adjustments, etc.l

Kim

Dear Kate, thank you very much for sharing your experiences with DBS. I had it done in Dec. 2009, for Familial Tremor. So far, I do regret having it done, despite it being my final option for treatment. I hope the day comes that I too, can think positive about it, as you now do. I've been searching the internet for patient stories and am really THANKFUL to finally learn I am not alone. Programming is not going well for me, and I may need to go someplace else, as my doctor told me this last one was the best they could do for me (despite the one before it being better). It's very frustrating, expensive, and time consuming (my doctor is 5 hrs away from me). Obviously, I could say much more here. I just wanted you to know how much I appreciate you sharing all this. THANK YOU!

Kate Kelsall

Hi Kim,

WOW -- Messages such as yours keep me writing. Thank YOU so much.

As you are aware, it is of utmost importance that the electrodes be placed in the correct location in the brain. Of equal importance, is that there be a competent, experienced programmer so that the patient can obtain maximum benefit of the DBS system. There seems to be a shortage of programmers with these attributes.

Just an observation...patients who have ET have a much easier time getting programmed at the University of Colorado than the PD patients. I think it's because with ET, there is just one symptom to deal with.

I hate to see you suffer. If you would like to continue this conversation by email, I would be happy to do so. We can discuss options available. After going through all of this, you deserve to function at the highest level possible.

Please stay in touch.

Warm regards,
Kate Kelsall

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It's great to hear from you and see what you've been up to. In your blog I feel your enthusiasm for life. thank you.

Andrew Baker

What an amazing story, thank you for sharing. Reading the experience of others can really make a terrifying situation seem much less frightening. My father recently had a lengthy hospital stay and he also said the urinary catheter was the most painful part! I suppose that really it is a good thing and shows how amazing medical technology has gotten.

lauren

Wow, great post. I don't know if I would be able to handle brain surgery as well as you did, that incredible. I have never has a urinary catheter but it sounds painful. I really enjoyed reading this post, thanks so much for sharing.

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