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  3. janvier

    DBS Programming / Configuration

    How long is such a session and who organises it. How many sessions are required and is the producer representative present in the session. Thanks
  4. LAD

    Bible Verses....

    “I can’t. You must. I’m yours. Show me the way!” Oscar Romero
  5. MComes RPH

    Medication and dosage help.

    Diane, That is fine.please keep me posted.l
  6. Yesterday
  7. Linda Garren

    Nightly bladder problems

    jb, you are totally back! LOL!!!!
  8. jb49

    Nightly bladder problems

    AS a young person, I was never very good at holding my urine back. Small bladder I think. Fast forward to present, 11 year veteran of PD and the owner of an enlarged prostrate gland that makes it difficult to drain my little bladder and make it gladder I still have issues but I do understand it better. 1. I did have appointments and time spent in the pee clinic with an urologist who concluded that my pd twitchiness, and a bladder that doesn't draikn easily has put me in a position of urinary urgency. 2. I do ok with it. It isn't my biggest problem. 3. A lot of my urgency is in my mind, not in my pants. 4. Usually I only go to the Bathroom once a night when I sleep better. Some nights when I am more restless, or sleeping lightly I go more often. 5. Google "key in the lock syndrome" You will be surprrised by the number of people returning to thier home, who find the urge to pee grow as they unlock the door, put the groceries down, pet the dog, pull off the snowboots and run to the bathroom. 6. I find that I need to be very casual about finding a bathroom that is available for use before I make the concious decision that "OK, I have to go to the restroom." The countdown has started from that point. If I find the intended restroom is not available, whoa! The urgency status just got dialled up. 7. If my body temperasture is warm, I have better holding power, If I am cold, I can not hold back as good. A cool night is not a good night to drink cold beer around a campfire if toilet facilities are not easy to access. 8. If I am travelling, I avoid the morning coffee and I limit juice and water even though I know that dehydrating myself is not a good thing to do. But it does help the urgency thing. 9. I have some belts and zippers that are easier to use than others which can be hard to loosen off. If my fumbly fingers are victims of a low med off time compounded by a higher than usual urgency and I am doing the "gotta pee real bad right now shuffle" things can get tense. When this happens and I finally get it done, I know that I am not done. I need to relax; think about drinking cold beer while watching Niagra Falls and going through the car wash. Try to relax, relax, don't let the Restroom out of sight. Guaranteed, I will pass more water.. A tense full bladder doesn't give up easily. Its like a little encore. !0. I get by with this problem ok. I have closecalls, I usually use the bathroom when it is available when travelling even if I don't feel like I really need to. And I have worn Adult pullups when on long drives or airplane just in case. Never had to test them yet! Remember this: You are not alone, lots of people suffer this problem..
  9. waruna01

    DBS Programming / Configuration

    Neurosurgeon is out of the loop after surgery. Programmers do most work after surgery. Most programmers are familiar with Medtronic. They may learn other systems as they become popular. They all follow same concept
  10. janvier

    DBS Programming / Configuration

    Some questions please? Firstly is there a separate programmer specialised in for example St Jude brio or any other IPG? Do these programmers always do the work and not the neurosurgeon. Does he just superwise or is he not there at all. What is the step by step procedure.
  11. Superdecooper

    Good morning!!

    Another Sunday ... I fill my lungs with the sweet life of morning and hope.
  12. Last week
  13. Linda Garren

    Just Interesting Things about This and That

    What a fishy post! LOL!!! Good thoughts in it, too, Scoop. Thanks for posting!
  14. Superdecooper

    Just Interesting Things about This and That

    Thought for today: Whether you give a man a fish or teach him how to fish, your job hasn’t changed. Your job is fish. It is not to make value judgments about whether the person is deserving of fish. It is not to criticize the person for not knowing how to fish already. And it is certainly not your job to stand around and debate the relative efficacy of fish charity vs. fish education while the person in front of you goes hungry. This person is your fellow human. Your job is fish. —author unknown.
  15. jb49

    Good morning!!

    Good Morning Everyone, It is Saturday morning. 1, Saturday used to be such a special day. Cartoons. It was the only day of the week you could get them on a country tv with a very basic attenae. It was something to look forward to. Now satelite channels flood the screens 24/7 with poorly written cartoons and I don't think kids are interested in them because they have become too common. 2. Movie theatres bring such great box office hits to the big screen. Price of admission is not too bad but the big money maker is the food. If you take three kids to the theatre and get them in for say 5 bucks a head, it will cost you 10 bucks a stomach for popcorn, a drink and skittles. Or you can be a grumpy grandpa and tell them that they should of eaten their lunch up. 3. Walt Disney was a heaven sent TV program on a Sunday evening that you loved to watch with your family. Households now with 4 tvs and 5 cell phones, 3 tablets and a huge x box setup, whatever that is, is often a household of bored people in different rooms throughout the 2800 sq. ft. house, surfing around looking for something to watch and it isn't "Poor Benji" 4. I am watching FIFA football on tv, Live from Russia. Pretty cool. They are great athletes almost as skilled as Canadian hockey players but here is one thing I hate. Falling down, acting wounded and stopping the play. I saw one player here today scream in pain and fall down demanding a penalty before he even was bumped by another football player. But I have developed a liking for the game and they certainly are very athletic and skilled players. just damn poor Actors. 5. We have 5 birdfeeders. We watched a red headed woodpecker stick its tongue into the hummingbird feeder and suck up the sugar water. Never saw that before. We have lots of cats this year and before there is an international trade tarriff placed on them, I could ship one to anyone needing a good barn cat. They like to sit under the bird feeders and make the birds nervous. Meanwhile the cats are afraid of our dog who keeps the cats excercised. And the dog is ever watchful of the cats who are as big as he is and outnumber the poor little fella. The birds fly away in fear of the cats , who haunt the dog .Why don't I keep the cats out of the yard, Cause they keep down the number of chipmunkeys that cleanout the birdfeeders every chance they get. And it has been proven that the chipmunkeys are smarter than me when it comes to trying to keep them out of the sunflower seeds. 6. Soon I will have waited 6 weeks patiently , like a young boy watching his grandpa slowly carry an ice cream cone to him, for the swelling to go down and the dbs to startup. Soon Grasshopper, Soon it will be time for you to go, Go to Toronto and get powered up. Is not it more noble to wait patiently Grasshopper for the cure to be held back and you learn how to be grateful for the heat of the sun and the pull of the moon and the grains of sand upon the beach, whose numbers pale in the light opf the number of stars in the heavens above. Now Grasshopper, quickly as you can, snatch the pebbles from my hand. Ah, I win again. It is good to be the master. Go wait a bit more Grasshopper and reflect upon all of this. (and who did not like to watch Kung Fu back in the day.?) 7. The yellow team just scored. They do a little victory dance, they jump up into the air together and collide, banging hips together and thier arms entwine the 4 men together, but one man is bumped a bit hard. As they fall to the ground he screams foul, you fowl. He rolls and buries his face to the ground and the officials wonder if that is a yellow card or a free kick in seeing as all persons involved are on the same team. 8. I am not being whiny and poor me but my shoulders are still sore with rotator cuff issues. I get them working good, free and easy through the daylight hours but most mornings I awaken with them frozen and I have to slowly get them rotating again. 9. Our Prime minister got the bills passed through the Senate to legalize pot, or rather decriminalize pot in Canada. Medicinal pot already was ok. But now anyone can have 4 plants at home in your herb patch, there is no roadside test for it if you are driving higher than a kite, and I think Mr.Treaudeau will rue the day this got done. 10. We watched "Awakenings" on tv one night this week. With Robin Williiams and Robert DeNero. Good movie. Doctor Sacks (true story) realizes that a new chemical known as L -Dopa could help his patients. That movie could be about us, well it was. I felt it inside my soul. Ok. Gotta go, Saturday morning cartoons, you know... Be strong everybody. PD is not for wimps. And keep that fist to the sky! jb.
  16. Hey Musicman,

    What Lee Child's book are you reading now. I just finished Night School. 

    -S 

  17. Dr. Okun

    deep brain stimulator battery replacement

    It is not common to increase voltage as the battery runs out.....it is possible but you have to be careful after replacement to set the parameters back to the lower level. Rather than do this we like to replace the battery before symptoms recur. Hope that helps.
  18. stump

    Welcome to the club

    It's what I need. It's supposed to be equivalent to 1.5 tabs of regular Sinemet per dose. What are on is like half a tab of regular Sinemet. So more like you're on a very low dose than me being on a high dose. Some people need more than others for good symptom control. I know, because I did an experiment, that less than 3 capsules at 4x a day just doesn't give adequate control. If you do get adequate control, for now, with 1 at 3x a day, stick with it. Over time you'll begin to need more. And yes, my Azilect experience was pretty bad.
  19. Superdecooper

    Welcome to the club

    Is that a lot? My doc has me on Rytary 95, one capsule 3x a day. I’m a pretty muscular 6’2, 230lbs so I guess that’s why he didn’t start me on a lower dose. You are taking more than three times as much sinemet as I am. But then, you’re not taking Azilect, which I gather you had a bad reaction to.
  20. Beau's Mom

    Good morning!!

    Good morning! jb, a five-pound sandwich would feed me for a week. I'm happy to hear that you are following doctors orders. What a blessing to have a supportive family nearby. The visit with my daughter is going well. She is sleeping a lot. That is a perfectly acceptable way to deal with a devastating diagnosis. I'm sure she will move forward in her grief process, as we all do. Her husband installed my air conditioner on Monday when the temperature reached the low 90s. He is a kind and patient man and is already looking into support for himself and my daughter. The PBC Facebook page has 3600 members. I pray that they are as kind and helpful as those of us here in Parkyland. Love to all, Dianne
  21. waruna01

    deep brain stimulator battery replacement

    Isn’t it common practice to increase voltage and other parameters to compensate during later stages of the battery?
  22. jb49

    Good morning!!

    Good Morning everyone! It isa beautiful day in Southern Ontario today. Actually, I got to see all of the morning and the sunrise on this Summer Solstice. It is a little cooler this morning, following hard on the heels of some humid days. The grass is green and my lawn is nicely mowed thanks to Imy brother who came up to my house yesterday to do it. It is a busy time of the year for me, but I need to stay away from the work until the surgeon clears me. Im only allowed to lift about 5 pounds until then. Gee, that amounts to only a very good sandwich. I am needing to get out and excercise more because when I sit around, my muscles sort get stuck, but I need to sit around more and rest some sore muscles cause when I do too much, my muscles get sore. Life is busy. Have good days everyone jb .
  23. Dr. Okun

    Wrong connections - is it possible?

    It is possible to reverse the channels when plugging on the device. As long as you and your doc figure it out the safest thing is to just be aware of it....and they can be switched at the next battery change.
  24. Here are some of things you may consider. 1- a motorized chair does not mean you need to be in the chair at all times 2- make the decision to prevent falling and to enhance quality of life 3- are you socially isolated or at risk of depression and losing important aspects of your life. I discuss these things with my patients and make a decision together.
  25. Dr. Okun

    deep brain stimulator battery replacement

    This is a really important question. I will paste a paper we wrote about this and you can share the data with insurance companies. It is best to have a plan and monitor closely DBS batteries. If settings are high they may run out faster than expected. In some cases we preventatively replace the battery a month or two early and maybe even before ERI light....to prevent symptoms....hope that helps. PLoS One. 2013;8(3):e58665. doi: 10.1371/journal.pone.0058665. Epub 2013 Mar 11. Management of deep brain stimulator battery failure: battery estimators, charge density, and importance of clinical symptoms. Fakhar K1, Hastings E, Butson CR, Foote KD, Zeilman P, Okun MS. Author information Abstract OBJECTIVE: We aimed in this investigation to study deep brain stimulation (DBS) battery drain with special attention directed toward patient symptoms prior to and following battery replacement. BACKGROUND: Previously our group developed web-based calculators and smart phone applications to estimate DBS battery life (http://mdc.mbi.ufl.edu/surgery/dbs-battery-estimator). METHODS: A cohort of 320 patients undergoing DBS battery replacement from 2002-2012 were included in an IRB approved study. Statistical analysis was performed using SPSS 20.0 (IBM, Armonk, NY). RESULTS: The mean charge density for treatment of Parkinson's disease was 7.2 µC/cm(2)/phase (SD = 3.82), for dystonia was 17.5 µC/cm(2)/phase (SD = 8.53), for essential tremor was 8.3 µC/cm(2)/phase (SD = 4.85), and for OCD was 18.0 µC/cm(2)/phase (SD = 4.35). There was a significant relationship between charge density and battery life (r = -.59, p<.001), as well as total power and battery life (r = -.64, p<.001). The UF estimator (r = .67, p<.001) and the Medtronic helpline (r = .74, p<.001) predictions of battery life were significantly positively associated with actual battery life. Battery status indicators on Soletra and Kinetra were poor predictors of battery life. In 38 cases, the symptoms improved following a battery change, suggesting that the neurostimulator was likely responsible for symptom worsening. For these cases, both the UF estimator and the Medtronic helpline were significantly correlated with battery life (r = .65 and r = .70, respectively, both p<.001). CONCLUSIONS: Battery estimations, charge density, total power and clinical symptoms were important factors. The observation of clinical worsening that was rescued following neurostimulator replacement reinforces the notion that changes in clinical symptoms can be associated with battery drain. PMID: 23536810 PMCID: PMC3594176 DOI: 10.1371/journal.pone.0058665 [Indexed for MEDLINE] Free PMC Article
  26. Dear Doctor? Based on your experience, is it possible for a neurosurgeon to connect the left side of the battery to the left side of the brain and the right side of the battery to the right side of the brain ie do the opposite of normal connections? If it can be done will it work? Can the IPG be modified and set as normal? If such a situation occurs can it be corrected without surgery? Thanks for your answer.
  27. stump

    Welcome to the club

    By the time you notice the motor symptoms of PD you've already lost 60-70% of the dopamine producing neurons. So it's entirely possible, and probable, that your PD actually started 10-15 years ago and it just took until now for you to realize it. For years before my diagnosis something just felt, ... off. I couldn't ever put my finger on it, and I never really said much as I didn't want anyone, including my wife, starting to think I was a hypocondriac. Literally the day after I started on Sinemet that went away. Would have been the same day but I started on an evening dose, so I was asleep not long after taking it.
  28. Superdecooper

    Welcome to the club

    I’m really not sure what to make of these PD meds. I honestly feel like I’m in my early 40s when I take this Rytary. It’s like stiffness and clunky movements evaporate and I feel like I can glide from place to place without a care. It’s the opposite of how I felt last week. It really reminds me of the athletic grace that I had in abundance when I took karate. That grace sort of slipped away in my early 40s. I do remember waking up saying something has changed around 2004. About 5 years later I started having the very first vivid dreams and kicking in my sleep, and sleep apnea problems, and low T.
  29. May I please have your input on whether or not I should be using a motorized scooter. With my DBS and medications I was diagnosed as Stage 3 Parkinsons disease along with being on blood thinners, osteopenia, and rods and screws in my back. I currently push myself to stressfully/dangerously to walk but I can't walk well nor long so I end up spending majority of time sadly living out of one room sitting in a chair so that I prevent getting so weak and tired that I fall. I'm torn because I don't want to loose my walk by using a motorized scooter some of the day. Is that a fact that I will loose my walk if I start using a motorized scooter just for some of the day to get around the house long distance or when I am tired? I'm not sure how I should be living with my disability at this stage of my parkinsons disease I just want to try doing the best thing for my quality of life and for my body . thank you
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