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secret squirrel

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secret squirrel last won the day on March 18

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About secret squirrel

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  • Birthday 01/08/1972

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    Tampa, FL
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    I enjoy spending time with family/friends/pets, shopping (online as well as in store), & watching/attending Tampa Bay Lightning games. I never miss an episode of The Walking Dead.
  1. This screen shot is pretty cool! Is this some type of app you use to track symptoms, meds, etc?
  2. After about a year of 1 mg 3x/day, I had to wean off it due to sleepiness while driving. I wasn't surprised since I've been prone to road hypnosis for years. Twelve years sounds like a pretty good run for any medication. What does your MDS say?
  3. I've thought about that and have decided to take my chances. None of the drugs I take are controlled substances; no way would I take that risk. It likely IS illegal to carry ANY meds without the original bottle. It may be just as unlikely that the state would pursue charges for possession of just a few pills that aren't controlled substances. I suppose you could also be charged with intent to sell or something along that line.
  4. Great thread, stump. I have a similar fob to the one swva has, but I keep it in the center console of my car. I had it on my keychain for the longest time until one day it somehow unscrewed, sending pills flying everywhere. Fortunately, I was in a store and could just pick them up off the floor. I picked up a plastic fob from the MJFF Partners in Parkinson’s event. It looks like a giant capsule. The swivel door is offset so it's not attached directly to the chain. So far, i haven't had any spilling issues. It holds more pills than the metal one and is much lighter. I also have a stash in a small plastic baggie in the zippered change compartment of my wallet. Great since there are times when I'm without my car or my keys. Not sure how well that idea would work for the gentlemen since your wallets are in your back pockets. Maybe the pills would be crushed.
  5. I noticed even before dx that when posing for a photo, ir was hard to maintain a smile. The corner of my mouth & cheek on my right side would quiver & fatigue quickly. Still does but not as badly. Didn't know what that was about until dx.
  6. The best effect for me (for insomnia & pain) has been a THC butter, good for making cookies & cakes or even just adding to Ramen noodles.
  7. Yes, people often don't give things (not just meds) enough time. I just kept telling myself to suck it up, that it was going to help me, that my body needed it. That was July 2015. I should add that I started pramipexole within a week and titrated up to 1 mg. If I was a little late on the pramipexole, I didn't really notice; but the first time I forgot a patch, boy was it obvious! A year later, I was weaning off pramipexole and had added amantadine, selegiline, and rytary. I can still tell if I'm not timely with the patch.
  8. That's VERY good! With my previous insurance, copay was $100 for 30 since it was a tier-3. I was getting it for $10 through the manufacturer assistance program. With my current insurance, it's not covered at all, so I'm seeking assistance through a different manufacturer program. Not sure what I'll do if that doesn't work.
  9. I hope the next Rx will be for 6 mg because this drug is costly. There are manufacturer programs that help, but if you don't qualify, it's difficult to afford.
  10. I've been on Neupro since the day of dx. Started at 2 mg for the first 2 weeks, then went to 4 mg. That first night I put it on at 11; when I got up at 6 AM, I barely made it to the back door for the dogs without passing out. Felt like I was dying: couldn't see, extremely nauseous, dizzy, cold sweats, almost hyperventilating. Somehow, I managed to eventually regain my composure enough to feed the dogs, get dressed, & drag myself into work. The nausea continued strongly the first month. I lost 10 lbs, but I've unfortunately managed to find it again recently, probably thanks to mj. Also since day 1, I can't brush my teeth without gagging, although it's not nearly as bad as in the beginning. My stomach is weaker than it ever was, but that is only minor. All in all, I love my Neupro patch; I hope I never have to give it up! Two weeks into treatment, a close friend/coworker told me she wished she had taken video of me because the difference in my walk was unbelievable. Many people on here knock the agonists, but for me, it was like a lifeline when I was drowning in the agony of PD.
  11. I only see my PCP for routine physical/bloodwork, vitamin d monitoring, & birth control. When taking a medication for the first time, I read the entire pharmacy printout that comes with it; then I cross-reference on If I still have questions, I'm fortunate enough to have a cousin who's a pharmacist, so I just text her. A couple of years ago, a pediatrician prescribed a cough medicine for my son. My immediate question was, "Is it OK to take that with his ADHD medicine?" He said he thought so, which only increased my skepticism. Sure enough, the pharmacy printout said it was contraindicated. Doubt we'll be seeing that guy again. Keep in mind that YOU are the captain of your healthcare team, and nobody knows your body as well as you do. Moral of the story: trust your gut & make no assumptions.
  12. I can't imagine returning to a doctor who told me I shouldn't be happy with feeling better, no matter the issue. What the hell is life about then? Sounds like her ego took a hit since she missed the Dx. I would strongly consider finding a new PCP. Maybe she's part of a multi-doctor practice & you can switch to one of her associates. I have a weekly pill box & bottle of water on my nightstand so I can take meds 30 mins prior to arising, as recommended by the neurologist who originally diagnosed me. Great advice...makes a big difference. It's absolutely worth it to seek out an MDS. Any exercise is good, but I LOVE Rock Steady Boxing!
  13. I tried to get a job at NASA, but the people there weren't very nice. They kept saying things like "You're not qualified." "Why are you naked?" "I can't catch him; he's covered in grease!"
  14. Great thread. Thanks for all the detailed info.