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  3. zerohours000

    Sleep

    I’ve tried every kind of sleep agent. Nothing makes me drowsy. I can fall asleep ok these past few weeks but my biggest bugaboo is getting straight hours of sleep—like 6 would be the holy grail for me. I was working off 6 hours of sleep for the past 5 years or so anyways. I would routinely go to bed at 11/11:30 and wake up st 6-7 every morning. So it was my habit at that point. I haven’t needed 8 hours in a very long time. But March 4th, out of nowhere, I can no longer fall asleep, or sleep more than 4 hours at a time. For example, last night a passed out at 2:30am and then up at 6:30; up for half and hour and then woke up at 10:25 or so. So two disjointed sleeps of about 3.5 hours each. And of course bizarre, nonsensical dreams.
  4. jb49

    Good morning!!

    Peace, that was a beautiful poem, My wife who reads a lot and has written lots of poetry enjoyed it too. Most excellent!! More please..
  5. afroney

    Sleep

    RBD is often the first warning sign of PD. Its very rare in healthy adults. It was my first symptom and started nearly 10 years before my diagnosis. Have you tried Trazadone? I took that for nearly a decade and it worked pretty well for sleep.
  6. jb49

    PD is not the end

    Hello John Hoefen, I had , no have a fly rod. They are really hard to tie now, flies that is. That is great that you still go fishing. Ha, I jumped at fly fishing but you probably catch salmon trolling the Pacific Northwest. Maybe even up into Britsh Columbia. Yes, I agree with Cereus. fresh salmon would be great. wecome aboard John H,
  7. cereus

    PD is not the end

    Sounds so good, John! Wish I lived near enough to take you up on the offer!
  8. John Hoefen

    PD is not the end

    Last night i wanted to go fishing.many of my fishing friends have given up the sport.old age loll Well i went alone and caught three nice big salmon Moral of the story true fishermen never grow old including Parkies Lol Have a nice John Ps if ypu live near me i have lots of good salmon
  9. coacht

    Life after DBS

    Chuck, If everything goes according to plan you will be able to do all of that. Make sure they put on the stimulator on the side away from where you shoulder a gun. That can be problems, infection, improper placement, programming problems. I do know that my DW would not be walking now and working some without DBS. They said she had the optimum outcome from the procedure. It is a matter of the risk you want to take and also, the disease will progress and DBS does not stop that, just gives you a reprieve. We are all getting older no matter what we do though. Coach T
  10. chuck172

    Life after DBS

    I'm a very physically active 65 year old man. I own a tree farm with the chores that go with it. I was told that DBS is my only hope in relieving my PD tremors. How much of a normal(to me) life can I expect after the procedure? Will I be able to continue to use a chain saw, split wood, hunt etc?
  11. Dr. Okun

    Delusions

    Generally we don't split the pill unless side effects at the higher doses. If no urinary infection or other cause and the symptoms continue to be worse we generally go up again on the dose by 12.5-25mg at bedtime. You may ask the doc about that option.
  12. Dr. Okun

    Sinemet /Sinemet plus /Amantadine

    Generally the trick is not the formulation but the dosing (right dose) and the interval (time between doses). Both have to be adjusted versus symptoms and also adjusted to avoid wearing off.
  13. Dr. Okun

    Levodopa induced dyskinesia

    It is hard to know but you need to titrate it to the right dose to see improvement. Purposely underdosing is not usually done by experts. Many people who try to underdose or not dose end up with the same issues from disease progression (fluctuations and dyskinesia).
  14. Dr. Okun

    dbs candidate

    Could be; if you have tried high doses of Sinemet (300mg per dose) then this is possible (DBS could help and often does for tremor).
  15. MIMILASTER

    levodopa challenge

    How about submitting your question to Dr Okun in ASK THE DOCTOR? He will be able to give you an answer based on his experience as a Movement Disorder Specialist. Regards, Mireille
  16. stump

    Summer adventure season starting

    No fish today. Got massive take down on my rod, but it was probably a giant trevally. Took the bait hard, but by the time I got the rod out of the holder it probably ran into a rock or coral hole and that cut the line. Surf launch was the hardest I've ever done. Took several tries and many soakings to get through the surf zone. Once past the breakers though it was fine. Almost kept the kayak right side up on the landing until the extra wave broke with me a little sideways. Will post a picture in a bit.
  17. Last week
  18. zerohours000

    Sleep

    I had a sleep study done about a month or so again and it came back normal. No movement. Just fragmented sleep. I have no dx btw. But I suspect I have something neurological going on. Been a frustrating 5 months. Feel like I’m just waiting for new/worse symptoms.
  19. afroney

    Sleep

    Yeah. Pretty much like how mine was. I retired on disability, so the fragmented sleep doesn't bother me anymore. Fragmented sleep can be caused lots of issues with PD. I've done 3 sleep studies - its really good to have at least one done if you can. They found I had severe central apnea, and RBD. They also said I literally tossed and turned all night (I had no clue). One VPAP machine and some pills was all it took to get somewhat normal sleep.
  20. Bensabio

    Levodopa induced dyskinesia

    lI am taking a low dose series of carbidopa-levodopa as a diagnostic tool. If the medication proves ineffective in relieving the symptoms (bradykinesia, no tremor), might it still induce dyskinesia? I.e., can levodopa induce dyskinesia in someone who does not have PD?. I should add that I am 81.5 and brady symptoms only began about 6 months ago.
  21. EllenR

    Parkinsons fatigue made worse by anesthesia?

    It took a second day to stop feeling like I was slogging through jello. Thanks for your post.
  22. zerohours000

    Sleep

    How was the sleep itself? Mine is always fragmented. I go to sleep at 2:30am; up at 6:30am; sleep until 8:30; again until 10 or so.
  23. chuck172

    dbs candidate

    I keep reading that to be a good dbs candidate: " Clear evidence of motor improvement with sinemet, with good motor function in the best on-medication state. A good screening test is the Unified Parkinson's Disease Rating Scale (UPDRS) part III, performed in 12 hours off of medication and repeated following a supratherapeutic sinemet dose. We require at least a 30% improvement in this score with sinemet. I am tremor dominant. The tremors show no improvement from sinemet. My neurologist has basically given up on me saying dbs is my only hope to stop the tremors. Is it?
  24. afroney

    Sleep

    RBD started that way for me. It got worse year after year. I finally had the docs do something for it. Cuts, bruises, broken bones, etc. Not to mention the problems of trying to share a bed with a girlfriend at the time. Hopefully, yours stays the same or gets better. I haven't had much luck with MJ and PD either. It can make me feel strange, as you described. I have troubles with balance and falls, which MJ makes worse in large amounts. Its all about moderation. MJ helps with my arthritis and controls symptoms leftover from a severe C-Diff infection Ive been fighting for a couple years
  25. zerohours000

    Sleep

    I haven’t had an episode since. So maybe two total episodes in 5 months. Still... The crazy thing is, benzodiazepines don’t make me sleepy or even drowsy. I feel wired at night. Most sleep meds have no affect on me. Tried Rozarem and it did zilch; waste of $40. I smoked a little bit of a joint a few days ago and made me very drowsy. But can only take a tote or two otherwise my entire system goes haywire and thinks it’s under attack. Very bizarre considering I was a smoker for 10 years and had zero issues.
  26. afroney

    Sleep

    I've had RBD for over 10 years. Ive been taking Clonazepam for it, for the last 5. It works great for me and is considered the gold standard for treating RBD. RBD can be somewhat dangerous if left untreated. I got mine promptly treated after breaking my hand and fingers during a wall punching episode.
  27. swva

    levodopa challenge

    Levodopa makes me feel better but not 100 percent. It will take some time for everything to smooth out. Pay attention to how long it takes to get relief after taking each dose and how many hours you get relief. You may need to adjust the dose or timing.
  28. I came to the same conclusion. MJ helped me quit all the painkillers I was perscribed. It also is good at stimulating appetite and supressing nausea. Ive found few benefits for PD. I don't believe its the cure-all many see it to be. Before I retired, I was in a similar position as you career wise. I was randomly tested for years. Fired countless fork truck and delivery drivers for being stoned and/or drunk on the job.
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