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#31 | |||
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Junior Member
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One Day at a Time
I didn't anticipate that getting my brain and the DBS units to settle into a comfortable arrangement together would take so long. My neurologist said that it will take about 6 months for my body to adapt. So, for now, my Sinemet doses aren't just changing about every second day but I'm not even taking any meds at all for my Parkinson's. Too bad that my entire right arm and hand have gone almost entirely rigid. Geez. They'll fine tune it again next week. Stay tuned! ![]()
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I am not a doctor, medical or legal professional. My statements are opinions based solely upon my personal experiences. |
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#32 | |||
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Member
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So sorry to hear that your arm is rigid...I will be praying for the alleviation of this complication to your DBS Be strong Keep writing We are pulling for you
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#33 | ||
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Senior Member
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Why do you have to wait a week for the next iteration?
I've not studied DBS, but I've assumed that the variables that can be changed are the frequency and the intensity of the pulses and that the effect of the changes would be felt almost immediately. Do you know if this is so? John
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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#34 | |||
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Junior Member
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I only see the neurologist once every 2 weeks for adjustments to the Medtronics units. It takes a while for things to stabilize after each adjustment.
So, next week the first thing I'll ask for is that he reduce the gain setting on my right side. That will do lot to help my right side rigidity! (thanks, Aunt Bean) Steve
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I am not a doctor, medical or legal professional. My statements are opinions based solely upon my personal experiences. |
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#35 | |||
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Junior Member
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Going Strong!
It's 1 am. Cannot sleep, it's been a difficult several days. I finally increased my Sinemet dose from 50 mg to 100 mg at 9 pm. I then slept until midnight but am still going strong. Wow, I used to take 7.5 tablets of Sinemet 250 a day. That's basically one tablet every 2.5 hours. That's a significant drop in meds for me. I'll see how well it all works tomorrow but this is nice so far. Here I am typing and walking almost 4 hours after my last dose. I hope it lasts. It'd be nice to tell my neurologist next Tuesday to remember the device settings! Steve
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I am not a doctor, medical or legal professional. My statements are opinions based solely upon my personal experiences. |
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"Thanks for this!" says: |
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#36 | ||
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New Member
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I truly appreciate you sharing your experiences. My DBS initial consultation is at the end of next month. I'll be able to raise informed concerns and opportunities for education when I have my appointment.
Randy |
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#37 | |||
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Junior Member
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Randy, I'm happy you found this helpful. Good luck with your PDS surgery.
Steve
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I am not a doctor, medical or legal professional. My statements are opinions based solely upon my personal experiences. |
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#38 | |||
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Junior Member
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DBS,Lasers and Tremors
We've now reached a point with the adjustment of my Medtronics neurostimulators where the laser is no longer much help during my visits to the neurologist. Oh, it still works great for helping me to walk when my PD state is "off" or close to it but the gain of the Medtronics units is now set high enough that my observable tremor has almost disappeared. Since the handheld laser pointer beam is no longer varying so much as before, it has nearly reached the end of it's life as a diagnostic tool. What have I gained so far? 1) I'm on a very low dosage of Sinemet. I'm now taking 50 mg of dopamine, 6 times daily (that's half a Sinemet 100 tablet spaced 3 hours apart). 2) I have almost no observable tremor. 3) My right foot toe curl has nearly disappeared. The pain is nearly gone. 4) I have recovered nearly 70% of the strength in my legs. 5) My eye focus has greatly improved. The world is less blurry! 6) My walking gait and arm swing are much improved. So, what remains to be done? I think the neurologist will agree that now is the time to start adjusting the Medtronics units based upon the standardized PD tests such as clenching and unclenching my fists. I'm pretty sure that I will then regain the ability to type and to play my guitar. I'm almost there as it is! Stay tuned! Steve
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I am not a doctor, medical or legal professional. My statements are opinions based solely upon my personal experiences. Last edited by Songfellow; 05-02-2014 at 03:17 AM. |
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"Thanks for this!" says: | anagirl (05-02-2014), Aunt Bean (09-15-2014), Lemonlime (05-02-2014), natnat (09-14-2014), soccertese (05-02-2014) |
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#39 | |||
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Junior Member
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No Fear of Dying
9/14/14 Many of the men in my family served with the U.S. Navy. Here's a few that I remember: My youngest brother was a plane captain on a carrier. Our father was at Bikini Atoll on a destroyer during the nuclear bomb testing at the end of World War II. My mother's father served on the battleship USS Nevada during World War I. My mother's brother (my uncle Rex) was as a cook during his time of service. Thanks to a high lottery number and my status as a college student I avoided military duty during the Vietnam War. My uncle Rex saved me from drowning when I was a child of about eight years old. My family was swimming in a creek in Indiana. Somehow I lost my footing and stepped into a hole. What I remember was sheer panic as my lungs filled with water. Immediately following that was a feeling of utter calm. I remember how beautiful the sky looked from my vantage point lying on the bottom of the creek. Such a nice day. As the image began to fade my very last memory was of a large hairy, brawny arm with a U.S. Navy tattoo reaching for me from above. I now literally have no fear of dying. God will look after me. I know there will always be a tattooed arm to lift me up. Steve
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I am not a doctor, medical or legal professional. My statements are opinions based solely upon my personal experiences. Last edited by Songfellow; 09-14-2014 at 05:42 PM. |
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"Thanks for this!" says: | Aunt Bean (09-15-2014), squeakmeow12 (09-23-2014) |
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#40 | ||
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Junior Member
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this is a giant inspiration! your optimism and troubleshooting via engineering brain framework (like in programming/computer science) to see this so objectively is awesome! i am a week away from my DatScan and am nearing completion of my first week on carbidopa-levodopa 25-100, to confirm a dx from a mds and neuro or see if it is a parkinsonian syndrome or wilson's disease apart from esseential tremors (have them in both arms, legs, neck and head sometimes usually when things get very stressful). I too am a musician so i have utmost empathy for the hand ordeals, arm freezing, and sometimes feeling like there is a nonfunctional arm...it can really suck, i started writing with my non-dominant hand (L) and using that side more, it takes work like everything else and you seem like a person who as unconditional faith through it all
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"Thanks for this!" says: | Songfellow (10-29-2014) |
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