Saturday, April 16, 2011

Crank up the electricity

Today, my PD symptoms were so bad that I had to leave the grocery store in the middle of my weekly shopping.  I realized my rigidity and "raptor claw" is becoming more frequent and intense......so I will be starting to tweak my DBS programming this week when I see my Dr.  With DBS, you can go longer without taking medications, but that window of good "on" time is becoming shorter for me. Sometimes my meds are only lasting an hour, which means that it is time to adjust the electricity going to my brain. Here we go with the roller coaster of programming!  Wish me luck! 
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4 comments:

  1. Bruce PottsApril 17, 2011 at 6:43 AM

    Good luck. I know all about that rollercoaster. And I feel like I have never totally gotten the ratio of meds to DBS correct. No matter what I do, I still feel stiffness in my right arm that is very troublesome. Makes typing hard! Do you have a tremor? Just asking because I don't, by and large. And I'd go for a second opinion on my DBS programming except I go to UVA which is one of the best neurosurgery places in the country. So if they can't fix me, I'm basically screwed! -Bruce

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  2. asmithconwayApril 17, 2011 at 8:08 PM

    I hear you about programming! I have not needed to be re-programmed for 7 months and I have been pretty good. But for some reason, this week is kicking my ass! I did a CPR class today and could barely sit for the four hours needed to do the certification. I do not have a tremor as a main symptom. I do get it sometimes when my emotions are high.....such as getting angry or stressed. Rigidity and slowness of movement is my brand of parkinson's! I never knew how much pain came along with this illness. Do you have pain?

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  3. Bruce PottsApril 18, 2011 at 5:46 AM

    Yes, I think we have a very similar type of the disease. A tremor appears in me when I'm very emotional about something, but otherwise nothing. And yes pain of a 6 or 7 on a scale of 1-10 with ten being the worst. Nothing much seems to help it either. It's funny. Everytime I go to UVA for a session, the intake nurse wants to know my pain on a scale of 1 to ten. Then the nurse practitioner and Ph.D. who handle the programming of the DBS never mention the pain at all. I brought it up to them one time and they said something like, oh, that's just for HER records! Ha-ha. Good luck with your reprogramming, Allison! Today I have to call UVA for a neurological exam because social security claims they still don't have sufficient info to process my claim. The fun never ends. After having PD for roughly 11 years (was diagnosed in 2001, and worked for over 10 years at 1 full time and 1 part-time job), you'd think they could cut me a Little slack. So much for the bureaucracy I guess. Anyway, enough kvetching. Let me know how it goes for you with the DBS!

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  4. matinaMay 25, 2021 at 6:50 PM

    i was diagnosed of parkinson disease 5 years ago,i started azilect,then mirapex as the disease progressed in february last year,and i started on parkinson disease herbal medicine from ultimate life clinic,few months into the treatment  i made a significant recovery,almost all my symptoms are gone,great improvement with my movement and balance,it been a year and life has been so good for me,reach them through there website at www.ultimatelifeclinic.com

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