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secret squirrel

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secret squirrel last won the day on March 18

secret squirrel had the most liked content!

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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.

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  1. Great topic, excellent responses! My exercise experience: I started with Tai Chi shortly after diagnosis in July 2015. This was helpful for mindfulness, relaxation, and balance. I think it helped me accept my membership in the PD Community. In February 2016, I learned about Rock Steady Boxing at an MJFF Partners in Parkinson’s event. (If you have the chance to attend, I highly recommend you do.) At the time, the nearest facility was over 40 miles away, through mostly urban traffic - not reasonable with my schedule/family life. Fortunately, they were expanding, and classes started July 1st. RSB is nothing short of amazing. It does fatigue me; sometimes I find myself yawning during class. I often take a nap when I get home. But overall, it has lessened my fatigue, or maybe increased my ability to fight it. I have regained much of the strength I had lost in my right arm, and to some degree, the dexterity in my right hand. I actually have improved some of the job skills I was beginning to lose, which in turn, has increased my confidence. Last week, I went to RSB for the first time in 11 days; I could definitely tell it had been too long. Compound that with issues getting my medication - I had to cut back on Rytary from 2 capsules to 1 capsule, then used a backup supply of Sinemet until I could get Rytary again - and I was the most miserable I had been since being diagnosed. After RSB again 3 days later, the cramps in my right leg & overall stiffness/pain have finally subsided. Any doubts I may have had about the importance/efficacy of exercise AND medication (at least for me) are gone. I would still go to Tai Chi if my schedule allowed. I kind of miss it. However, RSB is clearly more beneficial and more worthy of my precious time.
  2. Excellent question, great responses. I like it when people, especially ones I know, ask detailed questions, either about PD in general, or my PD specifically. I really don't mind answering questions as I'm happy to educate people. Sometimes, things are hard to explain, but it's still ok because I figure the challenge is good for maintaining my cognitive function. Not many people ask, though. Perhaps they think I don't want to talk about it. It amuses me when people comment about my relative youth. My best response is, "Disease knows no boundaries. I have a friend who was diagnosed with breast cancer at 33." What I wish others knew: Routine tasks are anything but. They require more effort than they could imagine, but they won't hear me complain because I don't want pity. Everybody has problems. Mine aren't necessarily worse than someone else's, just less common & less understood.
  3. This screen shot is pretty cool! Is this some type of app you use to track symptoms, meds, etc?
  4. 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?
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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!
  15. 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!"