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jb49

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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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Good to hear JB hope it continues to get better

Bard

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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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my crazy kid...one of 8 characters he portrays for his job 

 

LAD

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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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WellI am going way out of my comfort zone. I decided to get certified as a rock steady coach.  My partner in the fitness program I helped start has a certification in PWRMOVES. I needed to get certified in something different to add to the program. I am terrified  but excited.. fingers crossed I’m in charge and not my PD💪🏻

 

Hope all is well with everyone! 

Prayers jb!!

LAD

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LAD, the winners' cup is from me. I started RSB classes 10 days ago. One instructor has had PD since 2001. His boxing name is Footloose. I was pleased that during the third session I was able to move my hands and feet at the same time! 

Dianne  

 

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LAD:  You will love the Rock Steady training!  My DH and I and a coach friend attended the training last October.  We have started a RSB group in our small town in Georgia, and it has been wonderful.  We have eleven boxers enrolled now, and are needing to find a bigger place to hold our classes.  You will find that the need is amazing, as are the boxers.  Best of luck!  Adrienne

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thanks for well wishes from yawl,  It has been real hot here of late,  one more trip to Toronto for programming.  Hope everyone is doing fine. 

jb

 

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Hi, jb! I'm happy to hear that the programming is going well. It's cool and cloudy this morning in Seattle but beginning Sunday we'll be having a heat wave. Most homes here do not have air conditioning, so we'll be very warm indeed.

Wishing each and every one of you a stress-free day!

Dianne 

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Best of luck with that last programming trip, JB.

Stay as cool as (we all know) you are ;-)!

Diana

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On 7/20/2018 at 8:48 AM, jb49 said:

thanks for well wishes from yawl,  LOLOLOL!!!!   It has been real hot here of late,  one more trip to Toronto for programming.  Hope everyone is doing fine. 

jb

 

ROFL!!!! 😄   You've got the correct pronunciation now, jb!.  So the next step is how to spell it.  I'm just laughing every time I see it in that sentence above!!  I can't help it....!!   I couldn't think earlier how it's spelled in a sentence, but I'm pretty sure it is "y'all."  But I love the way you've done it.  I say go for it and do it your way!

Go, jb!!!

VioLinda

Edited by Linda Garren

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Okay Violet-linda, I got that yawl down pat,

It has been one hot summer here in Shangra Lala Land.  The heat has been so hot that my corn started to pop right there in the field.  The heat was growing my melons so fast that the vines were dragging the melons around the garden so quickly that,. yup, you guessed it.  They were dragging holes in the bottom of the melons. Well not quite, but it has been so hot and dry here that the grasshoppers were all carrying little thermoses of water with them, 

And I am done with the programming for my dbs machine,  Is it perfect, no, is it a cure for pd, no, but I think that it has improved my life.  And I say that carefully, because I have been known to jump the gun and make bold statements only to retract them later after the initial changes,  i say that I am done the programming but I expect that I will have to have the thing tweeked from time to time, just adjustments.'

Yesterday I had a bit of a problem in that I never really got as high and clear as I usually do.  Today is better,   I find that IF i power it up in the morning to a higher setting, I get going better, and at nightime, I power it back down for the indoor hours and I am not as dyskenetic as I used to be.  But this far I have not had any bad off times.  And who likes off times.  My little machine running all night long also helps me sleep better.My main weapon was and still is levadopa..  I have gone  from using 12-14 levadopa tablets ( 100/25s) down to about  5 a day and taking them about 5 hours apart.  But at nightime I can go 8 hours without medication.   not that I can sleep an 8 hour stretch, now that would be heavenly.

 So, I cautiously work my way into the future, I boldly take giant strides into the unknown, i meekly will baby my body along for the duration of my time on this rock called earth,  I will be careful of my  delicate machinery and wiring tucked under my skin, I will  be grateful to the medical team at Toronto Western Hospital.  Ah, I will work it out, I will become more adventurous with it, and stretch the limits a bit more.  And maybe I will learn to play the piano. That would be amazing, I barely can play the radio,

Have a good weekend everyone.

thanks for all of your kind words in this difficult period of adjustment.

jb 

 

 

     

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Thanks for the update, jb. It's good to hear that you have experienced some improvement as a result of your new bionic device.

I am looking forward to the recording of your first piano recital ;-).

I, myself, am working on the ukelele--putting my tremor to good use!

Diana

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jb, it is so good for us to hear of your report and to have you back with us, complete with your incredibly creative, imaginative, and fun writing skills.

I've just come up to the same level of C/L as you were prior to your DBS.  50/200 every 4 hours.  I didn't like the idea of increasing it.  It scares me to be on that high of a dose, wondering how long it will last and what will come next.  I have to keep reminding myself that we're under God's care and that everything that has been allowed in our lives by Him has a reason and that He loves us as a parent loves their child. He says that He feels along with us when we are scared, sad, happy, hopeless, angry, confused...  When we cry, He cries.  When we need comfort, He knows just how to give it since he went through those feelings when He was here on Earth, agonizing over what He knew was coming as to His terrible beating, ripping apart His skin, being humiliated, insulted, unloved, and then, finally, crucifixion--an awful way to die.  Incredible that He asked God to forgive those who were doing it to Him, saying that they did not know what they were doing (nor to whom).

Well, that is the VioLinda blurb for today.  I much prefer sharing writings by those who are more gifted as to explaining about these things.  It's hard to describe the depth of a relationship with the Lord in mere words.

jb, does your house doggie keep you company, and do the horses still look at you through the widow, waiting for their breakfast?

We can certainly relate to how uncomfortably hot it has been this year.  It's often near 100 degrees F, and if the temp goes down some, we are hit with more humidity, which is worse that high heat.  I think it may be from being so close to the Chesapeake Bay and the ocean.  Today is  an unusually nice one, though--sunny, not quite as hot as it's been, and a little lower humidity.  My balcony plants are loving all the rain and sun.

Take care, and God bless, jb.

VioLinda

 

Edited by Linda Garren
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Dear jb,

However your DBS has helped you, I am most grateful to see that your sense of humor is still intact. Grasshoppers carrying tiny Thermos jugs indeed. What a smile that brought to my heart (and my face as well)!:D   

You caught the essence of life with PD perfectly in this sentence:

17 hours ago, jb49 said:

So, I cautiously work my way into the future, I boldly take giant strides into the unknown, I meekly will baby my body along for the duration of my time on this rock called earth.

1

What joy you bring to us in your musings. Thank you, thank you, thank you

Dianne    

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Dianne and Violla and  Cereus , thank you for your kind words of encouragement.  I do appreciate them.  I am at the funny spot where my body has caught up to where  technology is.  I got to make this work cause there is no more goodies and breakthroughs waiting on the shelf.   I do feel pretty good.  Outwardly, I think I look more back to normal. 

I went over to a neighbours house on Friday.  They had a friend (an  8yr Parky) coming over that was interested in the dbs surgery.  They wanted her to meet me and have me explain the operation to her and they kept saying "Ohh  my , he is so much better than he was earlier this year".  Which I am I think, but listening to my neighbours over lunch, I must of been pretty rough looking and worn out before the surgery.

I still don't sleep well.  My arms are achy at nightime.  But I don't baby them through the day.  They are getting better, and I will get more used to it as well.  And one night I will sleep 8 hrs at one stretch.

Thanx again . Talk later.

jb  

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On 7/19/2018 at 2:47 PM, swamper said:

LAD:  You will love the Rock Steady training!  My DH and I and a coach friend attended the training last October.  We have started a RSB group in our small town in Georgia, and it has been wonderful.  We have eleven boxers enrolled now, and are needing to find a bigger place to hold our classes.  You will find that the need is amazing, as are the boxers.  Best of luck!  Adrienne

Thanks....I’m nervous but excited to get started!

 

LAD

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