Parkinson's Disease Tulip


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Old 01-09-2018, 10:59 AM #1
ashleyk ashleyk is offline
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Default Peg, Steve?

How many others on this forum have experienced DBS? Steve does not post much anymore but I believe he is doing much? better. Peg posted a lot before her DBS but rarely does now.
How many DBS candidates were turned down because of PD psychosis (my wife) and how many were accepted for DBS even if they did have any degree of PDP?
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Old 01-10-2018, 02:49 PM #2
lurkingforacure lurkingforacure is offline
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Default interesting research on DBS for dementias

Quote:
Originally Posted by ashleyk View Post
How many others on this forum have experienced DBS? Steve does not post much anymore but I believe he is doing much? better. Peg posted a lot before her DBS but rarely does now.
How many DBS candidates were turned down because of PD psychosis (my wife) and how many were accepted for DBS even if they did have any degree of PDP?
Ashleyk,
We too have psychosis and cognitive and memory issues. I very recently stumbled across a line of research using DBS for dementias including Alz and PDD. It is a very new idea, and one you might consult with your wife's neuro about. What I have found so far is that the procedure itself is safe and tolerated by patients with dementia, and that it can improve memory and some facets of QOL for some patients; however those benefits seem to wane about a year after the procedure, and from what I have read, were not that robust (and definitely not enough to transform someone who needed a caregiver into someone who could live alone). While the improvement wasn't huge, in my book, any improvement is still improvement

Unfortunately, I can't see our insurance company (or Medicare/Medicaid, depending on your situation) being willing to pay for DBS without a lot more research showing that the majority of patients not only improve, but improve enough to justify the risks and costs of the surgery. Just thought I would mention this. I believe the neuro heading up a lot of this research is Lozano, if you're interested.

Last edited by lurkingforacure; 01-10-2018 at 10:07 PM. Reason: clarification
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Old 01-12-2018, 03:49 AM #3
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Default

Hello to everyone. As soon as possible, I will upload some videos to show my current state of health. Next week I will ask the neurologist for my pre-DBS videos ...
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Born in 1969, diagnosed PD in 2007, first symptoms 2004. DBS in July 2016.
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Old 01-12-2018, 11:42 PM #4
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Quote:
Originally Posted by sim00 View Post
Hello to everyone. As soon as possible, I will upload some videos to show my current state of health. Next week I will ask the neurologist for my pre-DBS videos ...
That would be great! I am having the neuropsych evaluation for DBS on 2/2. may I ask what the target of your DBS was the Internal Globus Pallidus (GPi) or the Subthalamic Nucleus (STN)? It seems STN really works best for physical symptoms and reduces amount of meds required. However, STN has a much more negative impact on speech, cognition and
mood (depression) as compared to Gpi stimulation.

Can anybody share personal experiences?
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Old 01-13-2018, 02:51 AM #5
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Quote:
Originally Posted by Canna View Post
That would be great! I am having the neuropsych evaluation for DBS on 2/2. may I ask what the target of your DBS was the Internal Globus Pallidus (GPi) or the Subthalamic Nucleus (STN)? It seems STN really works best for physical symptoms and reduces amount of meds required. However, STN has a much more negative impact on speech, cognition and
mood (depression) as compared to Gpi stimulation.

Can anybody share personal experiences?
Hi, my DBS surgery was STN type. However , after 18 months, I haven't any speech or cognition or mood problem. In any case, I know that neurologists do not perform DBS surgery, if the candidate suffers from any non-motor pathology related to PD.

However, this is an interesting link: GPi vs STN deep brain stimulation for Parkinson disease: Three-year follow-up. - PubMed - NCBI
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