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Oakman last won the day on February 10

Oakman had the most liked content!

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About Oakman

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  1. Do any of you here sleep - I get little or none

    Exercise is great for sleep and a multitude of other PD symptoms. Melatonin worked for me, however the side effects were terrible. The best sleep aid I've found is a few tokes of cannabis in the evening. Very calming. Some strains are better than others.
  2. Tongue Biting After DBS

    I went through many temporary side effects with the initial programming sessions after DBS. A clenched jaw and slurring of words were among them. My programmer tried to eliminate my tremor, but it always seemed to cause problems elsewhere. We finally gave up on the tremor, which is a minor problem for me. I currently have two programming choices: one for normal conditions. and one for when I'm very active. But if I keep that latter setting on I have side effects that increasingly worsen. Another problem is the constant changes resulting from advancing PD. I personally feel there are always better programming/medication options, if you have the patience, money, and a capable programmer. Like you said, "It's all a tradeoff".
  3. Botox injections, anyone?

    I had botox for dystonia in my right calf. OUCH! Very little relief and of short duration. That was before DBS surgery. Only minor problem with dystonia since.
  4. Early PD and vigorous exercise

    A year and a half after DBS surgery and exercise definitely helps. Prior to surgery I was using a cane or walker to get around with no energy to exercise. Much credit goes to DBS, but if I slack off for a couple days, stiffness sets in. One mile dog walk and Tai chi every morning. Alternate pickleball and road cycling every other day. The ability to bicycle still amazes me. Two hours is about my limit for (fairly) strenuous exercise. I have a separate DBS setting specifically for exercise, and also take a little more medication. I have to be careful cycling because if I run out of energy I have trouble with balance. I'm sure every PWP has their own limitations that will change with disease progression.
  5. Infinity DBS system - issue

    Sorry to hear this, Deepak. Waruna1 may be right, However, my take is that if you are getting little to no response from DBS, the lead(s) may be misplaced. If your DBS team cannot give you some relief, I would suggest seeking an opinion from another team. There are many variables involved besides programming, and other avenues to follow, so there is good reason to hope for better results.
  6. What caused your Doc to suggest DBS?

    Just visited my neuro team and asked about battery replacement. They said the norm is local rather than general. If every thing is performing properly, the IPG is left in and the battery simply replaced. Quick and simple, with fast recovery.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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.