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DanC33 last won the day on April 5 2014

DanC33 had the most liked content!

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31 Excellent

About DanC33

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    Advanced Member
  • Birthday 11/17/1968

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    football, playing guitars when my hands let me, fishing,movies
  1. I was fortunate enough to have Prudential my LTD from my work. They hired Allsup to handle everything and I was approved first shot. Though they did say having all of my medical records going back to the start of my problems helped.
  2. DanC33


    It went very well...she thinks I'm a good candidate. So now I'm going to a Neuropsychologist next...so if I pass that I guess I'm getting DBS...
  3. DanC33


    My appointment was pushed up, it's today at 10:45!! Michael, glad to hear that it helped your dystonia. Hopefully if approved I can have similar results. Stay tuned....
  4. DanC33


    Thanks Michael....I'm going in for a consult in March. Will update with more info when I get it...
  5. DanC33


    Thanks so much for the advice!! Siak and Mireille,.. I was in automotive before all this went downhill and before that I was a wind turbine technician. So since the age of 13 I've always worked ...and I miss it. As far as aftercare, my Neurologist used to work with Dr. Okun!! So that should be good. Glad to hear that if the results aren't optimal it can be undone, but so far almost everyone that's had it says it's been good. My Neurologist suggested it could take up to 2 years for everything...surgeries/adjustments/drug changes etc.....before everything is OK. I do have some other questions.....What about travel? does the TSA freak out? Also I am considering moving, and where I'm wanting to go has 3 NPF Centers within 45 minutes.....or should that be placed on the back burner till everything is done?
  6. DanC33


    My MDS put in a referral for a DBS consultation. I go in on 3/17 for that. I'm very nervous about it and would like to know some more info...I've read through all the posts on here and have asked Dr. Okun about it, he's sure I'd be a good candidate. I know you have all heard these before but....I have a thousand things going through my mind and well I'm really more nervous about this than anything I've ever done... If I go through with it, how long is the follow up? (post op) How long does it take to get the adjustments right? Stop with all the pills? If successful , will I be possibly able to go back to work? Does it help with gait and balance issues? Dystonia? What if it doesn't work? Is it removable? Traveling with it? What about moving to a new area afterwards? I know you have heard these a hundred times...but it's good to know the good the bad and the ugly...My MDS says that it can give me back a large portion of my life back and really slow the progression.... Thanks
  7. DanC33

    "With enough $ and..."

    When I was DX at UCSF, I was told then(2013) by one of the professors and my MDS that until they know the causation of PD they will not be able to find a cure. He said anyone that says there is a cure is a snake oil sales man. He did say that maybe sometime in the near future there may be better treatment options that will slow the progression or possibly even almost stop it. But he said those are a long time off as the FDA takes a long time to approve anything.
  8. DanC33


    Dr. Okun, I've been on the same dosage of meds for almost 2 years and I'm starting to have some off periods. I am having issues with tremors and stiffness and dystonia when I'm off. I currently take 4 x 25/100 C/L(4hr intervals), 1mg Azilect and 1 50/200 CR C/L at bedtime. Should I take more? Adjust timing? I currently do not have an MDS/Neurologist as mine moved and I can't get in to a new one till November, so any advice is appreciated. Thanks so much for your help. Dan
  9. DanC33

    Shy Draggers

    Thanks Dr. Okun, that's excellent news!
  10. DanC33

    Shy Draggers

    Would having SLE that's very well controlled, preclude me from DBS?
  11. DanC33

    Shy Draggers

    Good news! My new Neurologist says that I definitely do not have MSA. She agrees with your assessment that everything is just normal PD. In fact she says that I might be a great candidate for DBS. So is DBS something that's good for people with YOPD and dystonia? (should I start another thread for this?) Thanks so much for all you do! Dan
  12. DanC33

    Shy Draggers

    I am going in for a second opinion on Tuesday, so hopefully the DX is wrong. I will talk to the doctor about that test when I go. I did forget to mention that I do have some ED along with the other things mentioned already.
  13. DanC33

    Shy Draggers

    Dr Okun, My doctor is pretty sure I have Shy Draggers Syndrome and not typical YOPD. Symptom wise I have Orthostatic Hypotension, urinary/bowel issues, diplopia, severe balance/gait issues, dysphasia and a few other autonomic issues. Plus since DX with PD in Aug. 2013 I have had to keep increasing dosages on Sinemet...from 3x25/100 to 5x/25/100 and 1mg Azilect with 1 Sinemet 50/200CR at bedtime He said these are all typical Shy Draggers. He said that I probably have 5-10 good years before I get too bad. Are there specific tests that can tell the difference between YOPD and Shy Draggers? And if it is Shy Draggers, what can I expect?
  14. I know that UCSF Parkinson's Center has some support groups http://pdcenter.neurology.ucsf.edu/patient-care/support-groups And welcome to our little corner of the world.
  15. DanC33

    Swallow Study Questions

    My doctor has sent over an order for me to begin working with an SLP but I am waiting on insurance to authorize it. In the mean time, is there any foods or beverages that I should be careful with or flat avoid? The only thing that was mentioned at the time of the study was "no rice or crackers until you can begin working with an SLP". Thanks Dr. Mahler for all you help an advice. Dan