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afroney last won the day on December 19 2017

afroney had the most liked content!

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About afroney

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  1. afroney

    Tremors only -- could it be YOPD?

    My understanding of some of the early antipsychotic meds is that they produce PD like symptoms in people. Sometimes, it is permanent. My cousin took some of the 1st gen meds for 20 years and developed severe resting tremors - that persisted even after the meds were stopped.
  2. afroney

    Pfizerstopping R&D for PD

    It's the beauty and curse of free market capitalism. Recently, Pfizer lost millions in a couple of failed Alzheimers and PD meds. So, they are pulling out. Can't say I blame them Still kind of bums me out that the best drug to date for treating PD was created over 50 years ago. PD is an incredibly complex disease - which unfortunately makes R&D for drugs incredibly expensive.
  3. afroney

    Weather and PD

    Honestly, cold weather doesn't seem to make that much of a difference to me. My PD symptoms get much worse with hot weather
  4. afroney

    sleep benefit a good way to measure PD

    I'd talk to your Neurologist. REM Sleep Disorder is common with PD. I take Clonazepam, which has completely eliminated my sleep talking, punching, kicking, and screaming. There are other options as well.
  5. afroney

    Diagnosed at 40 very scared

    Give those drugs a bit of time to work. I take Celexa and Clonazepam. As I remember it took over a month for both to take full effect.
  6. afroney

    what do you do for fatigue

    Before my PD diagnosis, I was perscribed Adderall for a couple of years to manage fatigue and concentration issues. It worked very well for about 6 months, then gradually lost effectiveness. I think that's very typical with amphetamine-based treatment.
  7. Certainly sounds like PD or a PD syndrome. I'm not a doctor, though. Pretty much spot on with how mine started. I was diagnosed at 27 and currently 32 BTW... Family history as well. Surprised they haven't done a Sinemet challenge, yet. It's how I was diagnosed. DAT scan can be used to confirm, but isn't 100% (debatable, but it was what my MDS told me). If it were me, I would ask for a Sinemet challenge. If the Neurologist doesn't know what it is or declines it, find another Neurologist. From my experience, sinemet is much more effective than Requip.
  8. afroney

    Parkinson's patient abusing opioids?

    Medical cannabis is somewhat effective for mild to moderate pain. However, if the pain is severe, nothing beats an opioid. A pain management specialist is someone you should consult with as a family. They are very good at determining what the patient's true level of pain is and what treatment is warranted. I was switching between Dilaudid and Oxycontin for about a year and a half to manage severe pain from a ruptured colon, the followup surgery, and resultant infection. It was a godsend, but I went through withdrawal hell when the meds were stopped.
  9. afroney

    Update to meds

    I had major issues with word finding (among other things) early on in my disease. My first Neuropsych test put me right on the border of MCI and dementia. MDS put me on Exelon 9 mg/day. Its typically used in LBD and Alzheimer's, but has been shown to help MCI. Recently, I showed major improvement on my second neuropsych test. I'm giving the credit to Exelon. You might ask your Neuro about Exelon. Its can have a bunch of nasty side effects, though. I've been struggling with the low blood pressure thing too. What's worse, is that I normally have high bp. MDS advised to discontinue BP meds and drink lots of water.
  10. afroney


    I developed Celiac disease as a complication of bowel surgery and long term infection. The intense vomiting and diarrhea from eating gluten means I cant hold PD meds down, which in turns makes symptoms worse. Fortunately, our society seems to be obsessed with the gluten-free fad, which leaves us with lots of food options. I still miss cheeseburgers and pizza, though.
  11. afroney

    parkinsonism vs. the disease

    I haven't seen such a forum. But, I figure this one could use more people. I have a couple of friends that battle parkinsonism. They have symptoms that very closely mirror my own. One was a professional MMA fighter that took way too many blows to the head and developed resting tremors, sleep disturbances, and Dystonia. The other a hardcore alcoholic with similar symptoms.
  12. afroney

    CBD Oil--Does This Work?

    I use a SMOK OSUB vaporizer. Very newbie friendly and costs around $50. I fill the tank with 50/50 mix of Mt Baker's "Thug Juice" and Green Garden CBD oil (the Silver 300 blend) I set the vaporizer @ 20W and it produces a very smooth vape. I puff on it all day. Good for non-smokers with glass lungs, like myself.
  13. afroney

    Excessive Fragmentary Myoclonus

    Mine were so frequent that it was interfering with driving. Nothing like having your arm violently jerk while gripping the steering wheel. Clonazepam got rid of the jerks for me. Makes sense, as the drug was originally perscribed for seizures.
  14. afroney

    what do you do for fatigue

    I've learned to accept fatigue. Its a normal part of PD, and gets worse as it progresses. From my experience, the best way to deal with fatigue is rest. Exercise and work when you can, rest when you can't. I quit working, and it was the best thing I ever did in terms of managing PD fatigue. No supplement or medication for fatigue has ever been a good long term solution for me, and I've tried them all. I find 2 hour naps, when tired, to be very refreshing. I take daily naps after lunch. In fact, I'm going to doze off in about 20 minutes.
  15. afroney

    Trying Sinemet

    Yeah. I'm a camel in terms of water retention. I usually have the reverse problem - trouble starting and stopping. This has gotten worse with the PD. I know vivid dreaming can be associated with marijuana use. Marijuana supresses REM sleep when regularly used. If you take a break, you'll experience REM Rebound (an increase of REM sleep), and therefore experience more vivid, memorable dreams.