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!

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

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

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

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

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

Randy, I'm happy you found this helpful. Good luck with your PDS surgery.

Steve

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

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

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 the carbi/ldopa works wonders so far as does dialectal behavior therapy, the troubleshooting technique of opposite action in thoughts or sometimes physical action-like with music i cannot hold or play my instrument and havent for months now, but that doesn't stop me from singing. Reiki has also helped, as has jin shin jyuitsu, and friends who are music therapists. eventually i hope whatever i have can keep lessening symptom wise so that i can go back to school for music therapy and help others as my friends have been showing me "just because you cant pick up and play your cello doesn't mean its the end, there is so much still out there to do" vibrations are healing, movement is healing, never letting a negative seed plant in the ever changing/complex myolinating pathways etc thank you for sharing and expressing...no matter what label of w/e i do end up having is, this and really everyone on this forum have been helping me get through these trying times. being only 24 and all this come down crashing so severely that it cripples me- weakness, fatigue, a useless right arm that cant make a fist or coordinate really at all a lot of times, tremors making my legs give out, and if im off time wise on meds whacko instability (I've been getting better about this though ) lots more etc it is good to see others with hope, faith, and drive/determination! I too have had several fall outs with friends when i was put on primidone initially for e.t.-i did not know what was going on, i had to do a lot of apologizing and was all over the place. never give up, never lose faith, and thank you so much again!