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jb49

Good morning!!

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20 hours ago, jb49 said:

Hi Emma, how are you doing? And Sean, are you watching the football?  I have watched quite a bit of it.  I have enjoyed it but I don't understand the time clock and when is the game done.  And why would they play the ball fom an attack position back to thier goal keeper.   Ooooh, as a hockey fan, that is not a good idea.  But, I have enjoyed the "footie matches"?

Mireillel,  I have been busy with that setup.  The long awaited for DBS initial program.  We travelled  by train to Toronto, about 100 miles.  I can't drive the drive  "off drugs" as required by the appointment.  Tuesday this week was the first return since my surgery.  I had to go up the day before, stay over nite and we were at the hospital at 8 a.m. to see the surgeon. I was all healed up good from surgery even if my head is bumpy with hidden wires.   Then up to the 7th floor and a Dr. programer who sat down and took control of me.  That was not painful by any means but very strange to have exterior control over my brain in his hands.  He told me that they would map out combinations of things that won't work.  He found the leads that would make me feel like I was about to upchuck, hot flashes and cold sweats,  make me cry with emotion saying the days of the week, and what it must be like to have a stroke as my face pulled to the left.  After an hour or so, we settled on a program that would do for a start .  Or thought.  But because I had to show up at the hospital Levadopa free, he asked us to have our lunch and levadopa and return to the floor. After our sandwich and two levadopa pills, I could feel the tug of war between me and the unwelcome visitor begin within.  We returned to the office.  The Dr. could see the struggle setting up on my right side as dyskinetic powers started up.  He told me to cut back on the Levadopa for the next dose and we returned to Union Station and the train.  It was not a good afternoon,  and I was aware of the stares from people as I walked around trying to balance on a leg that was not mine, or felt that way.   Or, trying to stand casual but looking like I was trying to shake my shoe off of my leg, while my arm swung in a strange way like I was playing invisible frisbee with an invisible friend. I felt uncomfortable whenever a security officer walked toward me.  I had a miserable train ride back to Belleville, concentrating on not kicking out with dyskinesia. Finally at 10:30 that night I turned the stimulator off. (as instructed by the Dr., if required, when leaving his office).  The relief was total and instant and I have great respect for the controller, even more important than the tv, or sattelite controller, not to be lost down behind the cushions on the couch, robbed of batteries, chewed by the dog.  Or played with by grandboys that want to see old Pa shake a leg.  I phoned the Dr. in the morning for advice, tried it again and after trying for 10 hours,  I turned it off again. I have another appointment early next week. I am patient, I have great faith in my medical team and great support in my life from my wife, family and friends.  So For a few more days I will go with the pills.  

And be be a patient patient.

Have a good day everyone.

Cereus, I visited Arizona once.  Such a beautiful clear blue sky every day in January.

ps. 4 of the boys in the cave have been rescued .  fingers crossed. Such brave kids.  And Rescuers too!!

john b

Dear JB,

Your talent as a writer and your wonderful sense of humor will always help you go through the most uncomfortable experiences.  To be able to see a situation from a distance can be a lifesaver.

The first part of the calibration procedure, defining a “no fly zone”, can indeed be an upsetting experience, as you watch someone trigger undesired feelings in you ; I had ungovernable mirthful laughter, that made a fool out of me and, what was very unsettling, a point where I was totally incapable of voicing one sound. Totally mute !

But you have been through this and now you are entering a new phase. It may be unpleasant and long, depending   on how easy your case is (mine is still difficult).

It would certainly be more convenient if you didn’t have to travel such a distance to see the DBS team, but things could be worse.  I live 120 kilometers from the Bordeaux Hospital where I receive follow up treatment, which I find  decent enough.

It is going to take time, you know it, but it’s only normal you get impatient, after waiting for so long.

It is certainly not fun to have to suffer the stares from not very thoughtful train riders and I can feel you were very uncomfortable and in physical pain as well.  But you managed to turn this unpleasant situation into a funny story. Chapeau bas, mon ami !

Keep faith and Keep us informed.

Regards,

mireille

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jb, you are being so brave. I still can't bring myself to do the surgery. If I misspelled anything than the computer did too.

 

I'm hoping everyone is feeling fine. 

I have a little grandson who turned one in March. We drove cross country to visit. I said something to make him smile and he not only smiled but laughed out loud and threw his head back. We all just stared. Wow. No one would admit they taught him that. Must have been on TV. 

It's lunch time and somehow I am the designated cook. Oh well. Someone has to do it. Mostly it's me anyway. 

m

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jb, you are indeed brave and incredibly generous in sharing your DBS experience with us. I find it both intriguing and scary that our brains can be manipulated by a simple electrode. Imagine the horror movies this science could (or has) generated!

I'm not a fan of horror movies so, for now, I'll stick with the Duopa pump to manage my Parkinson's. And boxing--I'm starting Rock Steady Boxing this week. The Northwest chapter of the APDA in Seattle offers financial assistance for folks on limited incomes. At my evaluation on Wednesday, I'll receive my first pair of boxing gloves.

Marcia, your grandson's laughter sounds like normal toddler exuberance to me. I hope school doesn't knock it out of him.   

Blessings to everyone!

Dianne  

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Stay strong jb.  You have a huge cheering section out here.  If you're really quiet maybe you can hear us. (we're doing the wave too!)

Prayers for strength to all who find themselves in need today and for those with family members who need lifted up.

Take care friends. 

 

Edited by Peace
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jb, we are all thinking of you and pulling for a great result once the programming is set just right.  That sounds like quite an experience you had on the way back home!  Like everyone else, I admire your ever-present sense of humor about the situation.  It can really help.  And it is always good to hear of the support that you have from your family and friends. 

All the best to you, and prayers for your recovery (and apologies for our president's disgraceful behavior towards Justin Trudeau).

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Hi jb..yes we watch the football but not big fans..as Linda says we are all thinking of you

Take care  guys , Em

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jb here, so far, this program is much better, at least it does not make me want to unhook and hurl it all far far away.  It feels different than a chemical pill treatment.  I am taking a lot less Levadopa.  Thanks for all the support here.  

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Hello Bard, thanks,

Yes, I definitely am doing better with my programmed stimulater in conjunction  with the levadopa.  The meds on, meds off cycle is closer timed out,  Every 4 hours thereabouts I reqire my Levodopa, carbadopa              (100/25). I get full measure for my on time and the off time is not nearly as harsh.  I think.  I still have a funny feeling that there is a stimulater running into my brain, which there is, but I actually feel quite good.

Fingers are crossed. Hang onto that Canadian penny Hope.

Best wishes to you'all.

jb

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On 7/13/2018 at 12:53 PM, jb49 said:

Hello Bard, thanks,

Yes, I definitely am doing better with my programmed stimulater in conjunction  with the levadopa.  The meds on, meds off cycle is closer timed out,  Every 4 hours thereabouts I reqire my Levodopa, carbadopa              (100/25). I get full measure for my on time and the off time is not nearly as harsh.  I think.  I still have a funny feeling that there is a stimulater running into my brain, which there is, but I actually feel quite good.

Fingers are crossed. Hang onto that Canadian penny Hope.

Best wishes to you'all.

jb

jb, what a wonderful report on how you are doing.  So, so encouraging, and I'm so glad you are feeling good things!

(P.S.  "yawl" is how U.S. Southerners pronounce "you'all")  LOL!

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