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Oakman

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Oakman last won the day on October 20

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About Oakman

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  1. What caused your Doc to suggest DBS?

    My MDS first suggested it when my meds started losing their effectiveness and dyskinesia became a real problem for me. He brought it up at every follow-up appointment for three years, not really pushing but reminding me of a window of time when DBS would be most beneficial due to age and disease progression. The university medical center just started performing DBS procedures ( I was one of the first to get a DATscan there ), yet he had no problem referring me to a more experienced DBS team. And I'm glad he did, since he was suggesting a bilateral STN. Instead I had a unilateral, GPi that has been successful for just over a year.
  2. Agree. My first neuro, a vascular specialist, did not fully grasp PD. I spent 4 long years trying to deal with his treatment regimen before seeking an MDS. I still remember him telling me (in 2007) that I would be bed-ridden in ten years. And I probably would have if I had kept him as my doctor. A good neurologist can make a world of difference in dealing with the disease.
  3. Interesting cannabis study

    I spent the last six months extensively "testing" a wide range of cannabis strains. I found the best use for me is a sativa dominant for sleeping. Did not derive a noticeable benefit for any other symptoms. I now use less than half a gram (3-4 puffs) per night at bedtime. I went from an average of 6 hours to 8 hours of sleep with 4-6 hours uninterrupted, and wake refreshed without any noticeable after-effects. Extremely pleased with the results.
  4. Newest DBS system st Jude's

    A little concerned about mischief: Billions of Bluetooth devices could get hit by this attack More than 5 billion devices are vulnerable to a "highly infectious" malware attack.
  5. Oakman's DBS Adventure

    Thought it time for an update. I had been switching between three group settings, especially A & B, but have stayed with B for two months now. Looks like that is it until my next appt in Nov 2017. I still feel much better than pre-DBS, but DW noticed I am squinting a bit more often. I do catch myself with a "frown" type expression once in a while and have learned to simply relax my face. Sounds weird to me too, but it works. For a while. Sometimes I am aware of it when I notice a person looking at me a bit longer. I then correct it, but for how long I do not know. Seems I am an angry PWP. Perhaps I will try meditation. Even though I am doing well, I sometimes wonder if I am at peak performance. There are so many variables in the settings that I question if I gave the programming options as much testing and true reactions as possible in the short time available for each setting. I mean could my meds last longer, cognitive improvements, better sleep, etc.? Guess that's par for the course.
  6. Oakman's DBS Adventure

    Well, finished my sixth programming session after surgery and am good to go until the next appointment in November. I now have only three group settings to choose from, as opposed to the four that had been available. And actually, I am only using two of those three based on my activity at the time. Surprisingly, the setting I use most is the one initially programmed by the Medtronic rep upon placement of the pulse generator, with only a slight increase in voltage. The primary symptoms I wanted DBS to address were dyskinesia and gait. This was done admirably, although I do notice my gait is ever slowly deteriorating, likely from disease progression. My balance also improved along with dystonia. Tremor showed no improvement, but stiffness and dexterity is better. Cognitive results remain to be seen with tests scheduled in Nov. Sleep is suffering and of course still have problems with urinary urgency, constipation, and some fatigue. Overall, my DBS experience went very well, with no complications from surgery. It should be noted that I had a unilateral GPi procedure and my disease was not highly advanced. These conditions seem to be more favorable to successful outcomes. I had more than one team member tell me to avoid a bilateral procedure as long as possible due to increased difficulties in rehabilitation. It took me five years after my MDS first suggested it. He said not to wait too long. I was told only 30% of DBS applicants are accepted for surgery after testing. So, would I recommend DBS? Depends. For me, dyskinesia was the deciding factor. I would lay in bed for hours every evening with my leg spasming uncontrollably. Under-medicating to minimize the dyskinesia was a no-win situation. I was moving from walking with a cane to a walker. My life was fast becoming grim. The latter was the deciding factor for me.
  7. A year& a half after dbs

    I'm one year behind you - unilateral GPi DBS August 2016. I am doing well with slightly less meds. Gait and dyskinesia are much improved. However, I can tell the disease is still progressing. I slept more before the surgery.
  8. DBS Update - 8 years

    Kim, I must say that my balance has definitely improved since DBS five months ago. I too understood DBS would not correct balance issues. But I stand daily on each foot, with the other extended forward, just to see if I'm still able - something I could not due prior to DBS. And ditto on my Medtronic rep. I asked him to turn my generator on when installed, which he did. His initial setting was almost identical to my current setting after five months of programming. Always enjoy your updates. Merry Holidays.
  9. Dr. Okun, I am a resident of Florida and recent DBS (unilateral GPi) patient. I am doing very well with my initial DBS programming, but am reaching the end and expect results are about maximized at this time. My question pertains to medical marijuana, which as you know, will soon be implemented in our state. I have experimented with marijuana for PD symptoms in Colorado periodically over the past four years. Though I found little benefit in most symptoms, one obvious improvement was use as a sleep aid. (Another one was improved bowel function.) Certain hybrid strains would routinely provide 6 - 7 hours of uninterrupted, restful sleep. I awoke fully refreshed and felt about as good as could be expected with my symptoms. This included the need to urinate due to bladder dysfunction, which diminished significantly. Needless to say, I miss it. One of the troubling PD symptoms that remain after my DBS is a lack of restful sleep. Have tried the numerous sleep aids, yet none provide the positive effects of cannabis. My neurologist is reluctant to recommend smoking as opposed to edibles due to such things as lung cancer, etc. However, edibles as a sleep aid obviously presents difficulties in proper dosing, and timing for this purpose. Do you think neurologists feel smoking a medication is inappropriate in any situation? Or is it possibly a reluctance of marijuana's unknown applications and study results? I'm wondering how to approach this dilemma and ask your advice on how to explain the risk vs. benefits of smoking tiny amounts of cannabis for treating certain symptoms.
  10. traveling

    You didn't say the method of travel, but traveling by motorhome is the way to go for PWP. You drive or stop when you want, have the bathroom with you when needed, and can eat whenever you please. We've been to 32 states during the past 3 years and enjoyed it all even as my symptoms progressed.
  11. Visit with Medtronics

    Heard about new leads with directional pulse in the works by another company.
  12. Visit with Medtronics

    It definitely would be a last resort to get the DBS battery in your head.
  13. When to up the meds?

    Since the idea is to keep a constant given levadopa level in your blood stream, taking doses closer together are usually best. However, there is a huge benefit to taking pills less often, especially early on in the disease. Easier to remember, and less worry about scheduling around eating and other activities. Of course CR is another factor for you to consider. Taking doses closer together may result in a build-up of meds later in the day, as the half-life is longer.
  14. How do you know you need to take less PD meds?

    For me it was a "hyper" feeling, kind of unnatural energy. I liked it at first, as I was feeling sluggish to begin with. But if I noticed a slight head movement and/or foot tension that I could control, I dialed the meds back. Those were the "good old days" when levadopa was very effective.
  15. Oakman's DBS Adventure

    Recap: Unilateral GPi DBS Aug'16 Just finished my fourth programming session with two more to go. This has become quite tedious and I will be glad to get it behind me. I had been comparing between four Group settings each month, one being the best of the previous months offerings, and the other three a broad range of alternative settings. I was to try each one for about a week and note my reactions. I was lucky, as the last three sessions I found the same Group to be best every time. Other Groups were causing symptoms ranging from fairly benign to headaches and toothaches that would drive me to bed with pain. Needless to say I didn't spend much time with some of them. This month's session changed and began to focus on slight variants of my favorite setting. Each one is in the same location on the lead but differs in combinations of pulse width and frequency. I am also able to adjust voltage within a limited range in each Group. This is proving to be more of a challenge to evaluate since they are so similar that I am having to perform tests in each setting such as reciting the months backwards while watching for tremor. Not to mention that a setting could take a week or two to settle in. All in all, I am very pleased. I have had no instances of dyskinesia or dystonia since DBS. My gait is much improved off meds and normal to me in the "on" state. Other noticable improvements are balance, fatigue, stiffness and drooling/swallowing. Some stiffness and an occasional tremor remains. I am much more active, lifting weights and even taking up pickleball. I have also gained 10 lbs.!?, with the holidays right around the corner. Best of luck to everyone post DBS.
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