Parkinson's Disease Tulip


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Old 11-16-2018, 07:06 PM #11
Blackfeather Blackfeather is offline
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For clarification, my Neuro had mentioned the DBS subject to me about a year ago. At that time I really didn't give it much consideration. My progression has worsened in the last year and my level of discomfort has increased. DBS may be the only way I can regain some semblance of a normal life. If I wait much longer to have the DBS surgery, it may be harder on me physically. My Neuro says there is no waiting period other than the evaluation and that I could be scheduled for DBS IN January. Lots to think about. Thanks Soccertese
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Old 11-17-2018, 01:15 PM #12
soccertese soccertese is offline
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Quote:
Originally Posted by Blackfeather View Post
For clarification, my Neuro had mentioned the DBS subject to me about a year ago. At that time I really didn't give it much consideration. My progression has worsened in the last year and my level of discomfort has increased. DBS may be the only way I can regain some semblance of a normal life. If I wait much longer to have the DBS surgery, it may be harder on me physically. My Neuro says there is no waiting period other than the evaluation and that I could be scheduled for DBS IN January. Lots to think about. Thanks Soccertese
the boston product is fairly new but it must have a good track record and be better than medtronics, otherwise why would any neurosurgeon take the risk of using new tech? did you ask them about why boston and how it is superior to medtronics, how many they've done and can you contact anyone who's gotten a boston DBS? DOES it have the rechargeable battery option? fwiw, the testing wasn't that bad, and i must have had an adrenaline rush cuz when i tested the movement part off meds i had a very low UPRDS score so i was worried i might not qualify but my neuro had seen me often enough to know i normally don't score that low.
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Old 11-17-2018, 04:39 PM #13
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My Neuro said the Boston dbs system is more advanced than Medtronics with more sophisticated programming options in delivering current to the leads. Plus the Boston rechargeable battery life is up to 15 years and is round instead of square with a thinner profile. I believe the Boston dbs has been installed in over 200 patients. Her sales rep, who used to be with Medtronics, is now with Boston because of their superior dbs system. I have not talked with anyone who has this new system.
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Old 11-18-2018, 11:52 AM #14
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I just turned 61 and have had parkinson for 25 years. Two years ago I was stuck in a chair most of the day and had 1 hour of movement for every three of off time. I had to go out in my wheelchair and had a night nurse who stayed with me as I tried to sleep. During the day I was able to stand using my recliner and **** into a bottle. I had always hoped that "they" would come up with a magic pill but I couldn't wait any longer. They did the whole operation in one day. Even before I was turned on I felt a difference due to swelling but when I finally was turned on with full voltage, I have been able to walk and haven't used my wheelchair. My battery only drops to 75% at the end of a week and it takes an hour and a half to recharge every Sunday morning.

I did it because I had no choice. My life didn't exist. It's not perfect since it does still rely on meds and food choices but now I wish that I had done it sooner because my body has lost it's tone.
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Blackfeather (11-18-2018), eds195 (11-21-2018), made it up (11-18-2018), soccertese (11-18-2018)
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