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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

    New Caretaker/Drug Interactions

    Watch out for a drug called Phenergan as well. Hospitals like to dispense the stuff like candy to sedate patients and/or control nausea. It is one of the worst drugs to give someone with PD. I was given some via IV and it completley screwed me up for 48 hours.
  2. afroney

    Just joined the club

    Good attitude to have! Even the atypical syndromes aren't a guaranteed death sentence. I've read about cases of LBD and MSA where the patients live another 20 years.
  3. Almost every strain I've consumed has worked very well for controlling nausea and vomiting. Just don't overdo it, because too much can make it worse. If you aren't a regular consumer of MJ, I suggest letting the dispensary know. Some of the waxes/concentrates can be overwhelming to a new person, if smoked or vaped. Pain control seems to be more strain dependant. I've smoked/vaped highly concentrated waxes to produce a "narcotic" effect to control severe pain, but my pain wasn't Parkinson's related. Someone at the dispensary should be able to point you in the right direction. I also suggest trying some of the high CBD, low THC strains. Many people I know have had success with those.
  4. afroney

    Just joined the club

    Welcome. There are a few of us on the forum with one of the Atypical diseases (PSP, MSA, CBD, LBD). Atypical diseases are harder to diagnose. Your doctor will likely order more tests to confirm if you have a "probable" diagnosis or not. Let's cross our fingers in your case. If it is confirmed Atypical, you will want to brace yourself for the first discussions afterwards with your doctor. The Atypical diseases greatly reduce life expectancy, and your doctor may mention things like Living Wills, and Advanced Directives. It's not a pleasant conversation. 😪 Medication has been highly effective for me. I take the standard PD meds as well as meds for LBD. I was able to work for 5 years after diagnosis, and retired on disability. Results vary greatly among individuals, though. Feel free to message me if you want to discuss more details.
  5. afroney

    Shower fall!

    Good to hear. I've had to switch from showers to baths because of balance issues. The "walk-in" tubs are great for this purpose.
  6. Nailed it on the head there. My experience posted above was during a roadside sobriety checkpoint. I was once pulled over for having one of those license plate frames car dealers put over your plates when they sell a car. Our cops are bored silly. Pulling someone over for a minor infraction is probably the highlight of their night.
  7. I only had an issue once with a rookie cop. Blew 00 on the breathalizer, which shut him up quickly. I have disabled plates now, which seem to work surprisingly well for keeping the cops out of my business
  8. afroney

    ropinirole - dizziness

    I had the same problem with both Mirapex and Requip. I was randomly falling asleep too. Switched to Sinemet, which was much more effective with less side effects. Dizziness is also a symptom of PD as well, so it could be that.
  9. afroney

    Dystonia Pain

    Thanks for the advice. Actually, one of my docs recommended a spinal stimulator for my ongoing problems with arthritis. I had no idea they could be used for dystonia as well. I'll have to look into that again when I'm healthy enough for another surgery. Sounds like it could kill two birds with one stone. I'm currently on 20mg Baclofen per day. Sounds like there's room to go still. Norco is what I was on following the surgery and for the Cdiff infection pain. Your post seems to confirm why it was so effective with the dystonia pain as well.
  10. afroney

    Working with Parkinson's?

    Depends. Employer provided LTD policies generally have 2 or 3 year elimination period for pre existing conditions. So, your PD could be covered under an employer LTD plan, if your disabiliy occurs 2 years after the start of your policy. I don't believe someone diagnosed with PD would be able to find a private LTD policy, after diagnosis. Too much risk to the insurance companies . Best to get it through an employer. That's what I did, and was able to retire on my last employer's LTD policy.
  11. afroney

    Dystonia Pain

    Hi Mark - What are some of the medication options for treating chronic, severe pain from Dystonia? I have very painful spasms on a daily basis. My MDS has added more Sinemet and Baclofen to try to prevent the spasms, but both seem to have lost their effectiveness over time. Botox was ruled out due to the location of the spasms, and surgery isnt an option at this point. I've read that opioid medications can provide relief, but my doctors seem to tip toe around perscribing them... To me, the pain can be a 10/10, - on a similar level to when my colon ruptured and they had to remove it via a 20" long incision a few years ago. I'd really appreciate your insight on this. The pain is often crippling and is starting to chip away at my sanity.
  12. 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.
  13. afroney

    Phantom smells???

    I smell random burning odors. Sometimes cigarettes, marijuana, burning motor oil - all odors I have spent alot of time with.
  14. 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.
  15. 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.
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