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Oakman

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Oakman last won the day on June 21

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  1. Oakman

    DBS Programming Sessions Per year

    Ditto.
  2. Oakman

    Is DBS being oversold?

    As a person with DBS, I would definitely say yes! I have no regrets about my decision, and personally benefit greatly from it, but am aware of cases where it may not have been appropriate for others. In fact, I was recently asked by my DBS team to speak with another candidate about his concerns with the procedure. After some discussion I recommended he put off the surgery for now. But think about it ... a specialized team of doctors and therapists are assembled to evaluate and treat DBS candidates. Some of these centers are without a doubt better than others, yet in any case it is quite an expense. They know of the great possibilities and are anxious to spread their good deeds. But now, 16 years after being approved by the US FDA, more centers are competing for potential candidates. Pioneers in the field are being joined by others and they all need to show a return on investment. All while the pool of potential traditional candidates is shrinking. There is bound to be some "aggressive" players in the field looking to expand their horizons. Check out this article: The article also touches on the ethics of DBS , especially due to its psychosocial effects. I hear of many failures in this procedure and considered them myself. But I was to the point where I felt there was nothing to lose. My dyskinesia was debilitating and dystonia so bad I could only writhe in bed for hours every evening. Never mind the many other common symptoms. For some of us it is a "no brainer". Others, ?
  3. Oakman

    insomnia

    I have tried many sleep aids over the years with varying results; none good. While I am able to go to sleep with no problem, since Parkinson's I am not able to stay asleep for more than 3-4 hours. Then another hour or two later, totaling 4-6 hours. That was up to a year ago when I tried cannabis. Smoking a small amount of a potent THC strain at bedtime puts me to sleep for a solid 4-5 hours. I then wake up needing to urinate, and back to bed for an additional 2 hours. It makes a world of difference. I wake up refreshed, with no feeling of hangover. Of course, this isn't for everyone. CBD oils don't work for me, it's the THC content that seems to knock me out. And I don't mind being high for the short period before falling asleep. That might bother some other folks.
  4. Oakman

    10 good years???

    My first neurologist went one step further and told me I would be bed-ridden in 10 years. He specialized in vascular neurology. I wasted two years with that quack! Had him refer me to an MDS and it changed my life. Incidentally, that was about 10 years ago. Medications served me well for about 6 years and I had unilateral DBS surgery 2 years ago. I am doing better now than when I first sought treatment.
  5. Oakman

    DBS Programming / Configuration

    Many variables involved... Bilateral or unilateral DBS? STN or GPi target? Age of patient, severity of disease, medications, infection. Could be lead placement or programming. How long ago was it? Most people with a successful outcome report a brief "honeymoon" period right after the procedure, where they feel very good, even without meds. I have a Medtronic programmer with two different settings, one for normal activity and one for higher activity levels. It's worked very well so far ( two years). I was told to turn off the programmer if I suspected any problems.
  6. Oakman

    Running out of energy

    I have discovered that Sinemet works like a battery recharge for me, and its effectiveness depends on how much energy I exert. After my morning dose, I walk about 2 miles and do 20 min of tai chi before noticing a return of "off" symptoms, i.e. gait, etc. When I take that same dose later, my "on" time lasts longer as my activity level is usually less. In fact, if I take a normal dose and just read or watch tv, dyskinesia starts to develop. But when I have higher activity levels, like bicycling or pickleball, I find it helps to take an extra half dose so as not to burn out quickly. It took me a while to understand, yet is very helpful when planning activities. This effect wasn't as noticeable early in the disease, and DBS has substantially reduced my dyskinesia. - 14 years Parkinson's, 2 yrs. unilateral DBS
  7. Oakman

    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.
  8. Oakman

    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".
  9. Oakman

    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.
  10. Oakman

    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.
  11. Oakman

    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.
  12. Oakman

    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.
  13. Oakman

    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.
  14. 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.
  15. Oakman

    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.
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