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  3. 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.
  4. 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.
  5. 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.
  6. 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
  7. Yesterday
  8. 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?
  9. 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 .
  10. 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.
  11. 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.
  12. 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
  13. 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.
  14. 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.
  15. 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.
  16. 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
  17. To Whom It May Concern: Have you ever heard of it being possible to get a battery change for the deep brain stimulator before you have reached ERI? I am experiencing symptoms of motor skill decline due to my battery running lower. I also have a high risk of falling and I'm on blood thinners and I experience difficulty breathing when my DBS is off. I am currently at battery life of 2.79. Can you recommend a better way to approach this to make a battery replacement surgery date happen before you reach ERI? (my surgery center is 3 hours away)
  18. Adolfo Ramirez Zamora

    dolor y la enfermedad de parkinson

    Estimados usuarios, Siguiendo con el tema de síntomas no motores de la enfermedad de párkinson, uno muy importantes es la identificación de que pacientes con la enfermedad pueden padecer varios tipos de dolor. En realidad, hasta un 70% de los pacientes con la enfermedad reportan dolores relacionados que tienen diferentes características. El dolor causado por distonia (contracturas musculares ) es normalmente aliviado ajustando la doses de medicamentos ya que ocurre cuando los niveles de dopamina están bajos. El dolor neuropatico y musculo esquelético son dolores más comunes y que afectan a muchos pacientes y con causa complicadas. Finalmente, un porcentaje más pequeño de pacientes refiere dolor central, que puede ser manejado con medicamentos que modulan los neuro trasmisores del sistema nervioso. Es importante enfatizar que normalmente la causa de dolor en la EP son multifactoriales e incluyen enfermedades articulares y problemas de artritis. Sin embargo, por favor empiece la discusión con su neurólogo para asegurarse que a este síntoma tan problemático se le presta la atención requerida y el manejo especifico. Muchos saludos, por favor envíen sus comentarios. Adolfo Ramirez-Zamora, MD Associate Professor of Neurology University of Florida
  19. Last week
  20. adams234

    Welcome to the club

    I am with stump as well. This summer we are building a custom Vardo (sort of like a travel trailer) to camp in. I am starting a You tube channel called the Shakybaker, and I intend to keep traveling as much as possible. Take one step at a time. Celebrate all the good moments and the bad ones wont seem so bad. Blessings Adam
  21. waruna01

    Is DBS being oversold?

    You should post this thread to DBS forum. It’s helpful for others considering DBS to be careful
  22. waruna01

    Is DBS being oversold?

    Yes. DBS has a commercial element attached to it due to its high tech expensive gadgets. They make a fortune selling these. This is why you got to be very careful about going into DBS. Get a second or even third opinion before doing DBS and even then pause and think twice if you really need two holes drilled in your head and permanently be attached to a machine to the rest of your life. Even the reversible element of this is a marketing gimmick. This surgery cannot be undone. Your scull want grow back and when the leads are removed it will likely create internal bleeding that will have irreversible side effects. Only do DBS when you truly got nothing to lose and if possible, get one side done at a time before doing both side so you can gauge its effects. 1/3 patients only need unilateral DBS on one side and most centers arbitrarily insert two leads on the same surgery.
  23. stump

    Welcome to the club

    Yep. That's one downside. Meds are pretty short acting. It may take a while to dial it in for maximum benefit. You may find you need a higher dose, or more doses per day, or both. I started on 1.5 tabs of instant release Sinemet 3x per day. Backed off the mid-day dose to 1 tablet to combat sleepiness. When that sleepiness came back I switched to Rytary 95. Tried to get by on 2 capsules 3x per day instead of the recommended equivalent (for my age/weight/gender) dose of 3 at 3x per day. That didn't work out so well, so I went to 3-2-3 capsules per dose but found I really did need 3 per dose, even at midday. Then as things progressed my MDS upped it to 3 capsules 4x per day. So far that schedule seems to be working fine.
  24. Superdecooper

    Welcome to the club

    Ack. Wait a sec. you mean to tell me that as soon as the medicine starts wearing off, the symptoms start coming back. Seriously?! ummmmm, this is definitely sucking.
  25. LAD

    Welcome to the club

    Parkinson’s is a word...not a sentence. I intend to have many Screw PD moments and to kick some PD ass for a very long time. (I am with Stump!) LAD
  26. Appala

    Is DBS being oversold?

    I believe it is being oversold in some cases. I had DBS 2 years ago. Outcome has been mixed (serious speech & language, gait & balance problems, with serious psychosocial consequences), but I'm still glad I did it because my very bad tremor is gone. So I'd say only agree to DBS if you are satisfied that there is more to gain than to lose. Will you be better off with it, even if you have serious side effects? Do you have the type of symptoms that are likely to be improved? Try to inform yourself as well as possible by reading up on it from various sources & talking to your doctor. Also, a good programmer can make all the difference, but how do you know a good one from a bad one? No sure-fire answers, but you must try to advocate for yourself.
  27. stump

    Welcome to the club

    ^^^ This. Take a look at my Summer Adventure thread. PD sucks, but it is manageable if you commit to still going out and doing awesome things. I won't stop fishing, hunting, kayaking (sometimes all 3 simultaneously), traveling, playing with my kids, accomplishing new things at work, and so on, until I literally physicaly can't anymore.
  28. adams234

    Welcome to the club

    I think we wish we could all give this membership back. First year is rough, but once you realize you can still do things you will feel much better. Try not to let your mind focus on what the future is going to look like. None of know. Just plan for now and hope for the best. The future will be what it will be. Blessings Adam
  29. Superdecooper

    Welcome to the club

    Hi adams234, thanks you for the kind invitation...I decline! first question: can I give my membership invitation back, no? DRats, what is this the Mafia? Hotel California? 😀 i am dealing with this, but I am going to have questions on how to stay strong and be positive, like LAD says I should do. For now, thanks everyone for the encouragement. -S
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