For those who care for someone with Parkinson's disease
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Topic Looking to connect, to share and to ask for advice Go to previous topic Go to next topic Go to higher level

By Knoosy On 2012.12.26 15:31
Hello dear Forum,

Wishing you all the best for a happy, healthy, peaceful new year. May you all have lots of positive energy, happiness, strength and courage to succeed in all you do. May you be guided and protected by the highest source of light and love.

Just to introduce myself briefly. My boyfriend is 28 years older than me. He suffers from advanced PD. I don't see him as my bf anymore. He is more like a close family member whom I care about very much. He was diagnosed about 8 years ago and has been recently progressing rapidly. he is being evaluated for DBS because his off times are very frequent. He was recently hospitalized due to a 30 hour freeze episode. At the same time his cognitive functions are declining rapidly. It seems that as soon as the cognitive testing for DBS was completed he made a rapid downward turn that the doctors don't realize. It's as if we're running against time. I'm grateful to have found this forum and look forward to getting to know each other.

Peace & Love,

By jcoff012 On 2012.12.26 17:05
Hi, Knoosy,

Welcome to the Forum. I am in the middle of laundry while my grandson and husband are napping, so my time is limited right now, but welcome. I am sure others will be on and say, "Hi", too. Jane

By Knoosy On 2012.12.27 09:43
Hi Jane,

Thank you for the welcome message. Nice to meet you.

By parkinit On 2012.12.27 12:17
Welcome, Knoosy -

Please be aware that some of the tests are done for DBS to prevent a rapid increase in memory/dementia issues that may occur after DBS if dementia is present. If there are any misgivings that your boyfriend's mental decline has worsened (as you have indicated) since taking his DBS evaluation, he shouldn't have the operation!!

DBS makes dementia move more rapidly if it is evident before surgery, so he certainly wouldn't want this.

By Knoosy On 2012.12.27 15:22
Hello Parkinit,

Thanks for sharing this information. When I asked the doctors about that, they didn't seem too concerned. They are pushing towards surgery. I did some research and found similar info to what you are saying about dementia worsening after DBS. It's been about 5 weeks since the mental exams towards surgery evaluation were done. He did fairly well except some mood related stuff. Within the past few weeks I noticed a rapid decline in his cognitive faculties. There was an increase in medication which may also be contributing to his lack of motivation, worsening executive skills and lack of focus and memory. I feel so bad about that because the doctor said that the surgery was his last chance. His off times and ER visits are increasing and his doctor said that those were signs of exiting. He's so scared and at the same time getting worse in every way. If he gets the surgery, the motor skills may improve but the mental problems may decline faster. If he doesn't get DBS the future is dim. In the end the doctors decide, but I have a feeling that they are more interested in doing the surgery than paying attention to my reports about his cognitive issues.

By cmonge On 2013.01.02 12:31
My husband is bipolar and cannot take any Parkinsons meds so DBS was his only option. However, I am noticing a more rapid cognitive decline and no one told me that this might happen or that he might have a greater chance of dementia from DBS. Still he can walk and feed himself. There is a trade-off. You have to look at what you want from the surgery.

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