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Everything posted by Oakman

  1. Oakman

    Sports and Dopamine

    That's a definite yes for me. Eight years ago I began taking a combination of immediate and controlled release C/L in the morning before my daily exercises. I had a regular routine and it served me very well. After DBS surgery, two years ago, I was able to increase my activity level significantly, riding a bicycle 20-30 miles and playing pickleball on alternate days. It is easier to guess the needed dosage when cycling as it is an individual activity and I can adapt the ride routes according to my energy level for that day. Pickleball is more of a challenge. The level of play often varies, and I sometimes fail to properly dose myself - usually under. When that happens, my symptoms begin appearing and the people who are not aware of my disease look at me as if I had Parkinson's or something. On the other hand, if I take more C/L than needed, I end up with dyskinesia for awhile, which is very uncomfortable for me. So, I try to burn it up with another activity. One interesting thing I've found is that about two hours of intense activity is my limit, no matter how much C/L I take. Or how much I condition myself. I just plain run out of gas. And when I do, I crash hard. And that is pretty much for the whole day. No energy for any other activities.
  2. Oakman

    Medical marijuana?

    My MDS doesn't object to MM, but does discourage smoking it. I say try it. Just go slow, like with any new med. You never know how people will react to cannabis. The higher THC strains work best for me, but then I don't operate machinery while under the influence. And (don't tell anyone), I actually enjoy the high, too.
  3. Oakman

    Medical marijuana?

    Just like all things Parkinson's, it varies. While I doubt cannabis "cures" PD, it does alleviate some symptoms for some people. For me it works best for sleep. And before my DBS, it also helped with dystonia.
  4. Oakman

    DBS Programming Sessions Per year

  5. 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, ?
  6. Oakman


    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.
  7. 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.
  8. 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.
  9. 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
  10. Oakman

    Optimal settings

    Dr. Okun, I am doing well after my first 9 months after DBS. Of course things aren't perfect, but I am pleased with the results. I wonder what I could/should do between now and my next appt in November as far as programming. I don't know what to expect. It seems to me there are so many possible variables in settings that it is entirely feasible that a better setting is always possible. For instance, I have two settings for two different activities. Could I have three, or four? It would seem a different setting for sleeping might be in order. How long can a person spend on chasing the ultimate setting? And with disease progression, comes an ever changing target? I feel like I am ready for my own programmer unit to experiment with.
  11. 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.
  12. 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".
  13. 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.
  14. 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.
  15. 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.
  16. 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.
  17. 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.
  18. 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.
  19. 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.
  20. Oakman

    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.
  21. Oakman

    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.
  22. Oakman

    Oakman's DBS Adventure

    Just got notice of DBS approval and want to start a thread following my journey. This forum has been very helpful to me in dealing with PD and so wish to make my contribution in return. First noticed symptoms in 2004 at the age of 50, with initial dx in 2006. That neurologist (vascular speciality) said I would be bed-ridden in 10 years. After some two years of ineffective treatment I struggled on my own before seeking out a MDS in 2012, and then finally having an "on" period from medication. My Sinemet honeymoon lasted almost three years. My MDS began suggesting DBS in 2013, but with the meds still working well, I rejected it. He would mention it every visit without really pushing and I now feel he was just warming me up for when the time was right. When the honeymoon started to fade early last year, I indeed was receptive to the procedure. I should mention that DW and I sold our house in 2013 and began traveling the country full-time in a rv. This proved helpful in easily locating near a desirable DBS center 1,000 miles from our hometown. I consider myself very lucky to have this luxury. The DBS evaluation period lasted longer than expected, with the initial exam in early October 2015 and having been approved in late Feb 2016. I should be notified of the actual surgery date on March 1st. As has been said, the most stressful part of the actual evaluation process was the half-day psychological testing. Brutal. The second most stressful aspect was waiting for the final decision. I am not yet nervous, but expect that to change as the surgery date draws near. I will be getting a unilateral GPi to address rigidity, tremor and bradykinesia. I also am hopeful for an improvement in gait as Sinemet helps with that symptom. Oh yeah, that first neurologist was wrong. He probably meant I would be bed-ridden in 10 years had I remained under his care. To be continued...
  23. Oakman

    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.
  24. Oakman

    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.
  25. Oakman

    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.