Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    

afroney

Members
  • Content count

    454
  • Joined

  • Last visited

  • Days Won

    5

afroney last won the day on January 18

afroney had the most liked content!

Community Reputation

127 Excellent

About afroney

  • Rank
    Advanced Member

Recent Profile Visitors

509 profile views
  1. 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.
  2. Gluten?

    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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. CBD Oil--Does This Work?

    I'll add that I have found vaporizing CBD oil to be FAR more effective than the standard drops under the tounge. I bought one of the portable vaporizers that the folks vaping nicotine e-juice use. The flavored CBD oils (blueberry is my favorite) are pretty tasty when vaporized. I mix it 50/50 with nicotine-based e-juice for added effect. (Some studies find nicotine beneficial in PD treatment)
  9. The Problems with Medical Marijuana

    Wouldn't recommend immediately driving after a few tokes, either. However, many state laws are zero tolerance for marijuana in your system. In my state, you could have taken those few tokes a couple of days prior to an accident, tested positive during the accident, and be arrested for OWI. Makes about as much sense as drinking half a beer and then getting arrested for OWI five hours later.
  10. Even underwater? I ask, because I'm terrible at swimming on the surface. My legs sink and drag, like yours. It stinks, because I used to be a good swimmer. Underwater, I do much better for some reason. I was really happy with myself this summer. Was able to touch bottom of a 20 ft deep pond. My buddy didn't believe me, so I swam to the bottom again and brought up a handful of mud.
  11. I have similar trouble with any swimming techniques involving flutter kicks. My legs sink which throws my front crawl off. I swim mostly underwater now, since my front crawl sucks. Have you tried dolphin or frog kicks? I think the problem with us parkies is that the normal flutter kick requires fine motor control. I do much better utilizing frog kicks (with a kickboard) or dolphin kicks (butterfly stroke, underwater). The dolphin kicks can be a bit hard on the back though...
  12. The Problems with Medical Marijuana

    That's a great, honest assessment, Patriot. I know a few people who use edibles for their hospital stays. Its an option if you want to be stealthy about things. Got to be careful with edibles, though. Very easy to go overboard. During all my hospital stays, I had a continuous supply of Dilaudid via IV, so there was no desire for additional medication. Yeah. The DUI thing sucks. The illegal aspects suck. My state is zero tolerance on Marijuana and driving. Same for meds like benzos or narcotics. If you keep a low profile, Its much harder for a cop to detect marijuana use than booze during a normal traffic stop. DUIs for weed are very rare around here. The local cops dont want to bother hauling someone in for a blood/urine test, and they havent caught on to mouth swabs. All bets are off if you are involved in a serious accident, though. Best recommdation there is to make sure all your equipment works and follow all traffic laws. Don't give the cops a reason to stop you. Or don't consume. I have been pulled over and questioned about my symptoms. One went as far as having me perform the field sobriety test and breathalized me. I showed him the cane, handicapped tag, and my medical alert card. He apologized and sent me on my way. I've not found marijuana to be particularly effective in resolving any of my PD issues. It does, however, have excellent anti-nausea properties and stimulates appetite, which has been key with all my GI related surgeries/infections. Most perscribed anti-emetics are contradicted with PD, so MJ seems to make a great alternative. I believe MJ, like every other PD drug works differently for each individual. I'll also say its good at relieving mild to moderate pain (nothing beats the narcotics and steroids, though, for crippling levels of pain). It also helps with sleep. Have you tried the pure CBD oil yet? I can buy it at any smoke shop around here and it seems to offer many of the benefits of MJ, without all of the legal headaches that come with MJ. I find vaping it to be the most effective form of delivery.
  13. Need your opinion...on Retirement disability

    Agreed. Used to weigh 350. Im a really big guy to begin with, but its still 120 too much. Having that and PD just really complicates things. I lost a bunch of weight, due to illness, but I gotta admit moving is easier with 80 less pounds. Now I'm told I need to carry an extra 20 to 30 pounds, due to my declining health. Ive found swimming and biking to be excellent exercises that PD doesn't seem to affect. Especially, swimming. Still really good at it - recently swam to the bottom of a 20 ft pond. As for disability, I was able to get another 5 years of working in once my meds were stabilized. Would still be working, but have been fighting multiple GI infections and Sepsis for the last two years. Stu, you might be able tohold out a little longer. Find the right level and type of meds.
  14. Morphine in hospice care

    Sorry to hear this. I spent some time in the hospital and then with our local home hospice group when I developed a life-threatening infection after a major surgery. I was given Dilaudid every 4 hours, and at the time, I saw it a godsend. Took away all the pain, anxiety, fears, etc. I would not hesitate to do the same for a loved one that was suffering.
  15. INcreased sense of smell?

    Yes. I've noticed heightened senses of smell after Sinemet dose increases. A few other people on this forum experience the same.
×