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Great news.....
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He is absolutely right. Just don't make the mistake I made and
assume that everything will turn to roses on Day1 and stay that way for the rest of your life. They told me it would be a PROCESS and you know what, they were absolutely right. I just came back from my 1st. 'adjustment' this afternoon. They took the voltage up from 1.9 to 2.5 and I feel much better. I have learned, however, that what is important is not what I feel like at this particular moment but rather how I'm doing a month from now, 2 months from now, 6 months, and so on. |
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scottsuf.blogspot.com |
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I still take some meds but nothing like before. It's not all rosy though. I get some headaches and muscle cramps especially in my thighs. My speech is slurred sometimes. I got the rechargeable battery and if had to do it again I would consider the regular one. I am a bad procrastinator but so far I have kept it charged. The first week after the operation is the honeymoon where it feels like it is working but that goes away as time passes and you heal more. I was at the end of my rope before this and had no life whatsoever. This is not perfect yet but I would do it again. I already put on 20lbs of very needed weight. |
Can't Believe It Either
Wow, I too had leads placed on 10/13. Currently at 2.5.
Speech is also a problem, although problems fluctuate somewhat. No muscle cramps that I can recall. I cry at the drop of a hat. I'm going to borrow Jim's disclaimer; Please consider the following information as my personal experience and in no way a recommendation or suggestion for others to go down this road. I am not a doctor. I am just a guy with PD. 1 capsule of Rytary 23.75/95 at 8 a.m., and 1 at bedtime. Yes, a total of 2. Currently experiencing approx. 85/90% tremor suppression, which I can live with. Especially on days when I'm sitting at home in pajamas. No more complications with Rytary and Alcohol After 9 am, I can eat as much as I want, as often as I want (5 LB. gain in 4 days). As far as I'm concerned, Dr.'s Kaplan, Fisher, and Griffith (Kansas City area) are Superstars. Key West tickets in hand for 1/7-1/12. Hopefully further symptom degradation won't be too severe or too rapid. Keep praying - |
Were you taking Rotary before the operation. I never tried it although I tried just about everything else the last 23 years. Before the operation I was frozen every three hours after taking meds. Now I can move but take a 50/200 er every four hours. I feel the old me creeping back in the difference being I can move all the time. I am beginning to wonder if the meds are still adversely effecting me.
Is there a website for people who have had DBS. My next adjustment is in mid January but I can raise or lower the voltage a little as needed. thanks |
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Thankfully in Austin, TX we have a "DBS support group" that meets monthly. Went last week, small turn out due to Holidays but glad I went. Six weeks out after surgery. Honeymoon period has warn off, adjusting to the new me. Left hand ZERO tremor, right hand is very stable tremor at times. Dystonia no longer an issue. Have not had any foot dragging or freezing (!!!). I can button a dress shirt on a bad day. Currently at much reduced medication. My "on/off" transition is very mild (amazing). Long journey to go, so far all it good. I was feeling too good and returned to exercising too soon. Brain swelling is real, so take it easy for six to eight weeks after brain surgery. |
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I try to get to the blog every other day. If you need anything else let me know. |
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Thoughts? Comments? Merry Christmas from the hills of East Tennessee! |
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