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06-16-2016, 07:30 AM | #11 | ||
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06-16-2016, 07:53 AM | #12 | ||
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06-16-2016, 08:17 AM | #13 | ||
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[QUOTE=sim00;1214353]Hello Soccertese, I am very happy for your decision, I'm going for DBS in July. I also believe that, at this day, is the only valid chance for those with Parkinson's disease and no longer respond sufficiently to drugs (average 10+ years). I would to ask you what device you will use, Medtronic or Boston Scientific or something else.
Best wishes.[/QUOte I am excited for you and wish you all the best! |
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"Thanks for this!" says: | sim00 (06-16-2016), soccertese (06-16-2016) |
06-16-2016, 09:21 AM | #14 | |||
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I am happy that this is in process for you, ST. It seems that you are really ready.
Keep us posted as you proceed. Robert |
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"Thanks for this!" says: | soccertese (06-16-2016) |
06-16-2016, 08:26 PM | #15 | ||
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Soccertese wishing you the very best possible improvement from the DBS and many productive and happy years after the operation.
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"Thanks for this!" says: | soccertese (06-16-2016) |
06-17-2016, 03:51 PM | #16 | ||
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Going in for a consultation next week with the surgeon. The neuro tells me I have a limited window to take this option. Hopefully I won't regret it.
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06-17-2016, 07:57 PM | #17 | ||
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Soccertese, this is a tough one. The temptation is to tell you that all will be well because you are such a strong person. But it seems to me that "being well" is as much a state of mind as it is a state of body. We obviously don't know how your body will react, but, as one person told me when I was diagnosed with PD, we know you have grit. My experience is that grit takes a person a long way, and in your case, I perceive exceptional grit. My thoughts and best wishes are always with you.
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"Thanks for this!" says: | soccertese (06-18-2016) |
06-18-2016, 08:11 AM | #18 | ||
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06-18-2016, 09:59 AM | #19 | ||
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Hump, what hump?
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"Thanks for this!" says: | soccertese (06-18-2016) |
06-20-2016, 08:59 AM | #20 | ||
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ST... I'm there with you.
Medtronic is currently the only choice. Boston is conducting trails, but you will not know if you are turned on or off for six months to a year. Probably a year off before an option for non-trail patients. St Jude is also coming up with their DBS, about three years off before we see it on a regular basis. I'll have bilateral done in a few months (date pending). Parkinson's is affecting both sides now, dystonia on just my right side. Meds effective (great response) giving me a 2 1/2 window as I take them every four hours. At 57 it should be good. Irony is I have dropped almost 50#. I was pushing 300# a couple of years ago, down to 250#. I understand with DBS it is common for weight to increase as the muscles aren't moving as much. I keep joking at it is more from loosing too much food off my fork (my dog is getting heavier, however). Few weeks back I was out for two weeks business travel, heading home flight was delayed couple of hours. Later diverted as the home airport got 9" of rain. Lost luggage. Too much tremor, jaw joined in the fun. Couldn't talk, couldn't write a note.... in an airport and not able to communicate. That was the final moment when I figured DBS is viable. For me I am still working, and want to remain working, so it makes sense to hopefully give me a few more years. |
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"Thanks for this!" says: | soccertese (06-20-2016) |
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