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Oakman last won the day on August 25 2016

Oakman had the most liked content!

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About Oakman

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  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. Heard about new leads with directional pulse in the works by another company.
  7. It definitely would be a last resort to get the DBS battery in your head.
  8. 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.
  9. 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.
  10. 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.
  11. Don't you have another Group you can switch to on your stimulator? I have have four choices on mine.
  12. What is Phase 1?
  13. I may not get it, but I don't see the advantage in this frameless method. Does it lead to more accuracy? While the injections for the conventional head gear are very uncomfortable (they hurt like hell), the process is over in a few minutes.
  14. Pool pump, washing machine, Golden Retriever... hmmm.
  15. It was good for me that the honeymoon lasted a month because my stage two surgery wasn't until five weeks after stage one.