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jb49

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jb49 last won the day on August 9

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About jb49

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    jb49

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    Ontario
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    Garden, horses, painting, talking, family, friends

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  1. jb49

    Good morning!!

    Peace, that was a beautiful poem, My wife who reads a lot and has written lots of poetry enjoyed it too. Most excellent!! More please..
  2. jb49

    PD is not the end

    Hello John Hoefen, I had , no have a fly rod. They are really hard to tie now, flies that is. That is great that you still go fishing. Ha, I jumped at fly fishing but you probably catch salmon trolling the Pacific Northwest. Maybe even up into Britsh Columbia. Yes, I agree with Cereus. fresh salmon would be great. wecome aboard John H,
  3. jb49

    DBS Programming Sessions Per year

    Thanks Mireille, For your advice and blazing the way 18 yrs, ago. I realize that my biggest job is clear and concise reporting of symptoms, and medications I do take to my programmer on my next trip to Toronto. In the meantime, I can say that I do feel a lot better, and I have hope that I can get things even better. Thanks Mereille. jb
  4. jb49

    DBS Programming Sessions Per year

    I wondered about that. Was I comparing apples to apples. Mine is a Boston Scientific dbs. I don't even know what the numbers are on my controller. And my leads are directional. Tonite, my dbs machine is running at 2.1 on the left and 2,2 on the right. I took 2 levadopas earlier today and this evening at about 7 I took a half Levadopa and I will pop the other half when I turn out the lights. I will leave my dbs as it is and mess around with the number of pills I use. The key should be my record keeping and how well I report to my programmer doctor. The machine has done a good job for me today. Again. I am pretty lucky. good luck and blessings to all.
  5. jb49

    Good morning!!

    Good morning Everyone, Peace, I thought that I did see you wearing the other half of the ones I wore home. They did look great. Merry Christmas!!
  6. jb49

    DBS Programming Sessions Per year

    ps. I am a 170 pound Male, and my setting on dbs is likely higher than a smaller person, I always push my doctor for a lower setting. My setup allows me 2.0 to 2.9. Yours obviously goes much lower Kaydee. (.85). The only way for me to go that low is to turn my machine right off. thanks for your input.
  7. jb49

    DBS Programming Sessions Per year

    Great reply Kaydee, really good ,I got a flappy arm, no, I used to have a flappy arm, my old chicken arm. That is now gone with the dbs, or rather that is much better. I used to have restless legs like crazy, that sorta passed when I was on the bigger dose of Levadopa. Pills for my Parkinsons were up to about 14 levadopas daily, a couple selegeline and that was it. I have wondered before if any parkys have restless arm syndrome. If I go to bed feeling that my dbs is too much, my arms can feel floppy. Flappy arm syndrome. (Flas). See, now we are getting somewhere, and that feeling is every bit as bad as restless leg syndrome. My stimulater can be turned down to 2.0 on my left and 2.1 on my right. That is where I go for bedtime. In the daytime I go back up to 2.2 and 2.3 although my machine controller allows me to go to 3 on either side. That is not comfy at 3 though. Makes me feel crawly. My programming doctor is sure that I do not need to ever go as low as 2 but..unless I am in the middle of an empty 100 acre field with room to move about, i cant go above 2.4. I think that the problem for programmers is that they don't wear the stimulater and rely on my descriptions to set up the program. Overall though Kaydee, I am happy with the dbs machine. I now take only 4-5 levadopa per day. and no dreaded off period. Have a good weekend.! jb
  8. jb49

    Good morning!!

    When I got home from the beach the other day, I realized that I had ended up with a green flip flop and a red one on my feet. Even though they look stunning together, I wonder if anyone else has a a pair of green and red ones. I would send a red one or green one to anyone who does and want the proper one. Or perhaps someone has a green one and a black one, and someone else has the other black one and a red one and had worn a pair of blue ones to the beach. Oh my, this could be a problem. Aw, I can wear a red one and green one, might start a fashion craze.
  9. jb49

    Good morning!!

    Ah,, the luxury of imagination. Even I sang out loud. jb
  10. jb49

    Good morning!!

    You don't have to put it on a list LADy, I saw you there.. Your show business son was at the 4th campfire along the beach, you were there with him, and he was leading a singalong of show tunes. See that is the greatness of the Echo Beach, no muss. no fuss, just let your mind run away with it. By the way, your duet that you sung with your son, "you are the wind beneath my wings " was terrific.
  11. jb49

    Good morning!!

    LADy, it was a great time. There were 497 people attended, representing residents from around the world. Emma founda cute little beach on an island off the south coast of Ireland. The roasted marshmallows were great, and of course lots of other food was available with vast amounts of Authentic Shepherds pie (irish styled with lots of onions) that Emma had whipped up in the afternoon. There was lots of driftwood to build fires with. Many drinks were spilt like a normal Parky Party, but no problem as they soaked away into the sand. As the sun came up, we all said goodbye to each other and disappeared back to Ohio, Ontario, France and California. Etc. Tiny pinpoints on a map. But when all the pins are in, the map is shaded way too much with them. Peace to All, jb
  12. jb49

    DBS Programming Sessions Per year

    Kaydee, I never have used that term before, sids, to describe that feeling, My first trip to Toronto for programming had me going home with too high of a lower limit. Thankfully I had the remote control to turn it right off. Stimulation induced dyskinesia.... I know that feeling. I sometimes think that there are not enough words in our vocabulary ( Mireille probably can break into French or Italian or some other language to describe what that machine is doing to her ) to describe everything that happens in this renovated, perked up., re energized body that I live in.. I think that is a bit of a problem, for me and the Doctor who listens to my explanation of the dbs machine running all nite long and creating this great pile of fake dopamine straining my brain capacity and it keeps me awake and it feels like slowly I am getting electrified. Or with the pent up energy I could fly out the bedroom wndow and around the world. I showed the programmer my notes and he thought that I could of been under stimulated and perhaps I should of taken more levadopa. No!. I don't blame the confusion on the programming doctor. I think that we need a standardized reporting form that you fill in your pills for the day, how you feel, extenuating circumstances (bloody hot in my house) and the voltage settings throughout the day. Maybe even have key wordings, like school report cards, where you can enter an phrase like stimulation induced dyskinesias. Or feels like restless arm syndrome. There is no need to reinvent that phrase everytime. It has to be hard for the programmer to sort through all of our notes to figure out what to try next. I know that I can stumble for words to describe how I feel. Happy to report that mine is running pretty good now.
  13. jb49

    Good morning!!

    Great, we used to go to Echo Beach quite often, What is it. ? A pop song that was enjoyed in |Ireland and North America. It was a song by Martha and the Muffins, a Canadian pop band, Martha would eventually have Parkinsons Disease. The song was a getaway in our minds. An office clerk, she couldn't wait until quitting time to get to Echo Beach to see the sun go down. Echo Beach is in everyones mind and imagination. The link that I hooked onto for Echo Beach this time seems to be part of a long play list. Stop it when you want. Echo beach, you going to sharpen some marshmallow sticks Emma.
  14. jb49

    Good morning!!

    This is a long weekend here in Canada. Civic Holiday. Always is the first weekend of August. A lot of my family go to the family cottage for the weekend. My daughters family will be there. I begged off this year. Not sure why, but there is the crowd thing that I avoid. As I get older, I like my things as they are, my routines, my space, my food. Basically I think that I am becoming an old fart. Be that as It may be, my cousin friend is picking me up in an hour to go to a country estate auction sale. Good entertainment for the morning. There is a portable lumber sawmill that he is interested in buying. And I have a pailful of cucumbers that should get converted to dill pickles, or sweet pickles, and I have a bunch of green beans to put into the freezer or pack thim into mason jars with dill, Green crispy,dill green beans on a cold day next February with a grill cheese sandwich is good eating. Now, the morning news is showing one of our exports, Drake. His last dance video shows him stepping out of a moving car and performing his dance moves in traffic. They interview a pretty young girl who scraped her face and fractured her skull busting dance moves, stepping out of a moving vehicle into traffic. And another young boy who gets hit by a car when he didn't jump soon enough or high enough to get up on the hood of a car. When asked if he was sorry for attempting such a dangerous move he replied no, just sorry that he didn't do it right but he would get it next time. I may have parkinsons disease but I am not stupid about such things as copying what one sees on the tv,. Hope everyone has a great day. MAYBE, WE could all get together at Echo Beach for a dance party tonite. Out of the traffic. Big bonfire, marshmallows, I will bring my stereo and everyone bring their favourite 8 track cassettes. We hAVENT BEEN TO ECHO BEACH for a long time. I bet that Emma has an Echo Beach in mind right there in Killkenny. later dudes, jb,
  15. jb49

    Good morning!!

    Oh yes LADy, I recall that now. You have issue with the white coats and blood pressure don't you. Patience still is mine. I thought I was done for initial program with my new dbs, last I was at the clinic, I left feeling pretty right on., but this week I have struggled again with the little energizer. I am learning things though. I need the range that I can lower the settings at night when my dopamine stock pile increases and i need to stop, sit down, wind down and fall asleep;. like a fat baby boy with a warm bottle of milk. Using the dbs is a new thing. I have had the moments of frustration. But I can also sense that when the stimulation runs in sync with the medicine , I can feel better than I was after 10 years of pills. And so I carry on, john b
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