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  2. http://parkinson.org/Summit Check this out. Attend free in-person in Phoenix, AZ or at a remote viewing site! Should be a great meeting. I am registered and hope to see you there!
  3. Yesterday
  4. I'm not sure where to go to get help on this or what it means other than abnormal, but what are the potential causes? I know I have carpal tunnel which explains the wrist, but everything else not sure. I have uncontrollable muscle tensing in my limbs, its really only 1 or 2 at most at once, but which one it is changes, though it's probably 75% on the right arm and leg. Happens 24/7 except if I fall asleep and then shortly after waking up if I don't try to move around too much.
  5. MComes RPH

    Low dose Zonisamide

    Curious, I had a feeling you were talking about the "PD" initials too. I was trying to stay politically correct, but agree with you 100%. PD has always been synonymous with Parkinson's Disease. As far as the traveling is concerned, I build in the recovery day. I to travel quit a bit and it has become more of an issue since the diagnosis. I now know that I need to recover and build in that time. If I am going for business, I make sure I plan out and do not overextend myself. I plan meetings over days, not hours. I schedule events later in the morning and try to end at a reasonable time, around 6:00pm to 7:00pm. I also try to keep the same bedtime routine on the road that I have at home. I also apply these same rules for leisure travel. If I must drive, I break up the day in half. I leave a little later in the morning, plan a break for lunch, and make a plan how much I CAN drive. Not how much I want to drive. To some this can be more stressful. I rather enjoy it. I take my time and really absorb the adventure. Another trick I have is that I use Melatonin when I travel any great distance. Melatonin helps keep your carcadian rythem in check. It helps my internal clock adapt to where I am. I also, as much as possible, try to keep my medication schedule on my original time zone. This way I do not experience many adverse effects of trying to change my medication to a new time zone, only to change it back in a few days. I leave the hustle and bustle to others. I work on my own schedule andmake plenty of time for breaks. I used to have to my schedule into my travels. Now I work my travels into the schedule. The best part about a trip sometimes is the travel and not the destination. I hope this helps and please keep me posted.
  6. I would hang out where people could better help but where is that? I’ve been to a myriad of doctors but they’ve been pretty useless. I would also love to see a more defined specialist...but who is that? I’ve heard of something called functional neurological disorder, which I’m going to bring up at my next appointment, but I keep getting conflicting advice. Some say don’t lead your doctors, let them do their jobs; others say you have to fight, etc. It’s been a very demeaning experience. Hope you’re well, SD. Thanks for replying and for the article. I was also told about this show on Netflix called Afflicted, about unsolved medical mysteries. Best Zer0
  7. Dr. Okun

    TIREDNESS AFTER TAKEN SINEMET

    It is variable across patients and different strategies work for different patients. The key is monitoring.
  8. I don't buy into all the formulas as being exact. I follow symptoms. Reasonable to use formula and go slow, but titrate up or down by symptoms as it is just a guess.
  9. Dr. Okun

    Fatigue after DBS battery replacement

    Yes, it is possible after battery surgery to experience fatigue from the surgery, anaesthesia or other factors. If it is linked to the surgery and does not resolve to baseline in a few weeks probably best to alert your doc.
  10. Dr. Okun

    Does your size matter?

    Excessive sleepiness, dyskinesia, high energy level are all symptoms that may emerge in some patients with higher doses of Sinemet.
  11. Dr. Okun

    TIREDNESS AFTER TAKEN SINEMET

    Everyone is different. If you try lower doses of Sinemet/Madopar and increase agonists you could still have side effects so it would need to be monitored. Everyone is different so it may work in some cases.
  12. Dr. Okun

    Mirtazipine

    You should definitely have a chat with your care team and see what they think.
  13. Dr. Okun

    Question about Link between dopamine and testosterone

    Great question. Our group actually studied this and we could not find a relationship between testosterone level and levodopa (Sinemet) dose.
  14. cereus

    Notes From the Synuclein Conference

    Thanks so much, Benyamin, for sharing the link to your notes. I appreciated your thoughtful article. Do you happen to know whether a young researcher from Arizona named Jeremiah Pate attended the conference?
  15. Superdecooper

    PD Guy - Shot Thru The Heart

    Wow, this thread is getting really deep and personal. Yikes! No McCall, I haven’t considered implants. But I would if my wife asked me to, or if my urologist thought it would help. I’m not sure how I would feel if later my wife had a health issue that made sex less appropriate. Probably upset, but life is like that with lots of twists and turns. Otolorin, I think sex counseling is a problem for people regardless of whether PD is involved. It’s just another of those hang ups that Americans face. Unfortunately we live in a puritanical society that uses sex to market products. Very confusing for most people. You can go to counseling yourself to get yourself straightened out, but at some point you might need your wife to come with you. Maybe your counseling will give you the courage and the words to say to make a difference with your wife. -S
  16. Hey Zer0, i hope you keep fighting for your health. It may not be PD, but you have a right to find out a definitive diagnosis and get the right treatment, plan, medications and piece of mind. Seems like what you have is not PD, but you’ve been hanging around this board because folks are willing to listen and help you figure things out. But I’d suggest you also look elsewhere for support...that more aligns with your health concerns. But don’t give up or give into despair.. heres some reading https://www.washingtonpost.com/national/health-science/doctors-dismissed-her-but-she-turned-out-to-be-right-after-years-of-needless-suffering/2018/09/14/b5364c64-9593-11e8-810c-5fa705927d54_story.html?utm_term=.5765f38b5750
  17. So Curious

    Low dose Zonisamide

    Thank you for your reply. I look forward to reading the articles you have provided. As far as the Peyronie's Disease is concerned, I just don't want them calling it PD. Those are our letters, they can use something else like PYD. Truly wish this was my biggest worry. LOL My last full-time job was a travel position, now I am scarred to take a trip. My MDS vetos the idea, stating it takes me too long to recover. One day of activity and the next day I am wiped out. Do you or anyone else have any ticks for travel by car - 7hrs 1-way, 3 nights in hotel and 3hr plane ride plus airport time, 4 nights at relative's apartment. I seldomly leave this building. I need a change of pace. Fifteen years of Parkinson's and I am beginning to get despondent. Thank you and anyone else for suggestions. You are much appreciated. m
  18. jb49

    Good morning!!

    LADy, we all need to hope and have faith don't we.
  19. LAD

    Good morning!!

    Saw them in concert... this song is awesome LAD
  20. Beau's Mom

    Good morning!!

    Pathfinder, hectic is an understatement! I will be thinking of you and your husband and sending healing energy your way. Dianne
  21. Pathfinder

    Good morning!!

    Checking in! Boy does life get hectic. I’ve been battling lots of my own health issues like a sudden acute kidney injury in March from high BP that left me in stage four kidney failure. Through diet I’ve got back to stage three, having to make so many changes. Diet is so crucial to avoid dialysis and Phosphorus and Potassium are in everything. Also, my diabetes tanked because they took away the effective drugs cause...kidney failure. Hubby fell in the shower, but he’s doing pretty well. Some more cognitive issues have shown up, but the PD is sort of on a hold, not any worse thank goodness! I do read here daily and wish wish you all well. Thank you for thinking of me!
  22. Last week
  23. otolorin

    BALANCE PROBLEMS WORSENED BY MEDCATION

    @ McCall. Your husband may benefit from balance exercises,which could be recommended by a Physical therapist.
  24. otolorin

    PD Guy - Shot Thru The Heart

    Hi everyone. I have not posted here in awhile.However I have some questions,could it be some wives of pwp are just too depressed and afraid to be intimate with us anymore?Because we are not who we used to be anymore,and not attractive to them like before we were diagnosed.So what do you do if your wife is too afraid to go to your neurologist's visit with you,or even the Therapist's office for counselling?
  25. McCall

    PD Guy - Shot Thru The Heart

    I am curious if any of you men with ED and PD ever seriously thought about penile implants? This is a serious question. My husband and I thought about it, and it might have helped for another year or two but he could not get himself to do it which since I had gotten BA for him, kind of bugged me. But it turned out just as well since my physical condition deteriorated to the point sex would have been very painful for me.
  26. noah

    duopa pump

    how is the daily care for it. what do you have to do and how long does it take
  27. McCall

    BALANCE PROBLEMS WORSENED BY MEDCATION

    One of my husbands first symptoms was bad balance and falls. This was before he was diagnosed with anything. He has been on meds now for 7 years but they never did much for the balance. watching him walk through the house reminds me of a pin-ball game. trouble is I am not much better on balance and I don't have PD though I have several other unpleasant things.
  28. Beau's Mom

    duopa pump

    noah, I am very pleased with my Parkinson's experience on the Duopa gel. I, too, was tired of having oral carb/levo wear off every 2.5 hours. I had biphasic dyskinesia--jerky movements when the medication was at its peak and as it left my system--every dose. The pump can be set very specifically for maximum benefit and the least amount of dyskinesia throughout the day. Please keep us posted as you go through the process. Dianne
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