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afroney

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afroney last won the day on December 19 2017

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About afroney

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  1. afroney

    Phantom smells???

    They really should. I have alot of the symptoms of LBD and take Rivastagmine, but my official diagnosis depends on which Neuropsychologist you ask. I think Im somewhere in between.
  2. afroney

    Phantom smells???

    I smell random burning odors. Sometimes cigarettes, marijuana, burning motor oil - all odors I have spent alot of time with.
  3. afroney

    Parkinsons fatigue made worse by anesthesia?

    Yeah. Pretty much my experience too. My last surgery really made my PD worse. Its been 3 years since the surgery, and I still haven't recovered fully.
  4. 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.
  5. 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.
  6. 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
  7. 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.
  8. 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.
  9. You can try CBD. It has very low THC levels and wont get you high. I recommend vaporizing or smoking it for full effect. The drops on the tounge did nothing for me. Some people and doctors swear by Melatonin as well. I've not had much luck with it I haven't found marijuana to be an effective long term sleep aid. Like most sleep drugs, it becomes less effictive as your body develops tolerance.
  10. afroney

    Parkinsons fatigue made worse by anesthesia?

    I've had a couple of major surgeries with PD and my experience has been similar. The doctors said it was normal with PD If possible, I request only mild sedation for minor procedures. That way, I dont waste the whole day trying to recover.
  11. afroney

    Do any of you here sleep - I get little or none

    Same here. I put a mini fridge in my bedroom. Lots of yogurt, meat snacks, and other treats in there. I cant sleep unless my stomach is full.
  12. afroney

    PD and immune system response

    From personal experience and advice of my Drs., I'd say there is quite a bit of truth to the article. Statistics back it up too. PD is one of the leading causes of death in the US. (#13, I believe). The majority of those deaths are from secondary infection. I battled GI infections for close to three years. The doctors pointed to my PD as the main culprit, and mentioned most healthy people get over the same infections within a few weeks. Also interesting to note, my surgeons and anesthesiologist mentioned having PD can greatly increase risk of complications and/or death from surgery. I've learned to avoid hospitalization at all costs. Between the risk of hospital-acquired infections and medication errors, its probably the most dangerous place for someone with PD to be.
  13. afroney

    Social Security Disability...who has been denied w/PD?

    The SSA recently changed their definition of what qualifies someone with PD for disability It should make it easier to qualify. Their former definition focused on motor function only. The new one looks at a broader range of symptoms - like difficulty concentrating, or depression. Your Neurologist's opinion has the greatest weight in the decision. Make sure he/she is on board If you have an Atypical varient of PD (LBD, MSA, CBD, PSP) make sure to call and let them know that. Having Atypical PD is an automatic qualifier, under their Compassionate Allowances program. I was approved under this program and the decision was made in less than a week.
  14. 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.
  15. 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.
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