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secret squirrel

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secret squirrel last won the day on March 18 2017

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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. I had this symptom prior to diagnosis. It typically would happen at the end of a long workday when I was the most fatigued & trying to relax. When I started dopamine agonist therapy, it quickly subsided. I think it was the Neupro patch, not the Pramipexole that helped the most. I stopped the Pramipexole almost 3 years ago, but fortunately, that symptom has not returned. And yes, it is quite annoying!
  2. Welcome, One Day at a Time! Great name! Don't feel embarrassed; I lurked for months before I signed on here. I'd bet many others have aslo. I haven't thought about it until now, but I have had a scent "stuck" in my nose a few times. Like everybody else in the room doesn't smell it anymore, but I still do. A "nosewig," if you will. Oh, the infinite joys of Parkinson's Disease...the only constant is the variablilty of symptoms. Secret Squirrel
  3. WOW!!! As if the physical aspects of PD aren't rough enough...my heart goes out to you guys. The only other thing I can say is if it was me, I would leave no stone unturned; I would do whatever it took to try to save my marriage. Best of luck to you all.
  4. Funny that you mentioned Lyme Disease...I wondered about it when I read your previous posts. Do you live or have you visited a region with tick populations? One of my RSB friends was recently diagnosed with Lyme Disease, shortly after vacationing in the Northeast this summer. Her only symptom was a very high fever for 4 days; she had to ask her GP to be tested. I understand that untreated Lyme Disease can manifest neurological (among other) symptoms as months pass. Still doesn't sound like Parkinson's to me. I don't think you're a hypochondriac. I know it's frustrating to chase a diagnosis, but don't give up. It sounds like you know your body; someone out there will be able to help you figure out what's wrong with it. You may want to check out this thread: http://forum.parkinson.org/topic/23272-lymes-disease-mimics-pd-symptoms/
  5. Yes, I have experienced the phantom smells, typically like an electrical/metal burning or something sweet, like baking sugar cookies or butter cream cake icing. This is a more recent development for me, only in the last 6-9 months, but I've had a diminshed sense of smell for several years. Now that I'm really thinking about it, the times when I've had phantom smells are times when my nose seems to be working better. I assumed it was just another Parkie trait that may or may not be present, so I didn't think to mention it at my last MDS visit. After reading some of the posts here, I wonder if it is not disease progression.
  6. Thanks, all...much appreciated! I certainly am looking forward to the adventure, and we definitely want to get it right the first time. Thought of grab bars, but not toilet seat height...DUH! Master bath for sure. I mentioned no stairs or at least a ramp as well, but hubs kinda crinkled his nose at the idea. Not sure if he's worried about the aesthetics or is slightly in denial. Stairs are daunting. My great-aunt died after falling down her stairs several years ago. Not sure of her age (late 70's?), but as far as I know, she didn't have any health conditions that would predispose her to falls. When I was younger, I wanted a 2-story house...not anymore!
  7. We are in the process of selling our current home, and then building a new one. This will likely be the last time we move since it will be on family property that we will one day inherit. We've already discussed a few design ideas that are Parkie friendly, such as a walk-in shower with a built-in bench and wide doorways to accommodate a walker or wheelchair. I would love to hear any ideas from the forum community. Thanks!
  8. Hello, Chris! Great name! (I am Christine.) I also haven't been on here in awhile until about 24 hours ago; not on FB as much anymore, either. Just too busy lately, I suppose. Looks like there's plenty of info & support to be gained here still. Welcome back!
  9. Is your neurologist a Movement Disorder Specialist (MDS)? If not, you should seriously consider switching to one. This is a very unique disease; seeing a doc who has additional training & experience can make a HUGE difference. Some people on here have reported long wait times for the initial appointment, but I'm sure most would say it was worth it. At the very least, you should see a doctor who addresses your concerns and helps you feel more in control of your illness. What to ask at your next appointment? Anything & everything you want! Make a list; tell him that you're not satisfied with the results of the current medication. If you still feel he's not listening to you, find another doctor ASAP. I just realized the date on this post; how did it go?
  10. I realized today that I will only buy front-hook bras in the future. Not only do I find them much easier to put on, but so far, I can only find them in push-up style. I call that a win/win!
  11. Absolutely, reading about all the possible side effects will scare the crap out of anyone. I think the key is being aware of them and knowing your body. Your care partner should also know what to watch out for. Ultimately, you have to weigh the risks against the benefits, and do what works for YOU. I am on several medications, which I tried to avoid, but I decided that all anyone really has is today. I want to squeeze as much out of it as possible; tomorrow is not promised to anyone, PD or no PD. I will deal with consequences if/when they arise. I go to Rock Steady Boxing as much as I can, usually 2-3 times a week. I notice my symptoms more if I go too long between sessions. I wish I could say I feel like my old self, but even on my best days, I'm aware of the deficits on my right side, although it seems minimal. Less than I'd wish for, but I'll take it. It is sometimes difficult to keep a positive attitude, especially at first. Continue to do the things that make you happy for as long as you can. (We recently got a new puppy!) Find a support group of some sort; RSB has that fringe benefit. You can never have too many Parkie friends; they're the only ones who truly understand what you're going through.
  12. My original neurologist suggested taking medication 30 minutes before actually getting out of bed...genius! So now I have one of those weekly pill keepers & a flip-top water bottle on my nightstand, and my phone alarm set half an hour before my clock radio alarm. Sooo much easier!
  13. Oh God, YES! Sounds just like me just prior to dx, also at 43. Some mornings, I was so stiff that my legs nearly gave out on me when I got up out of bed. Felt like someone spent the whole night beating me with a hammer while I slept, especially my feet. I remember thinking, if this is what middle-age is like, I don't know how I'm gonna make it to old-age! It is VERY different from any other soreness, similar to how the fatigue is very different. I thought I knew fatigue with mild anemia; then I became pregnant. I thought I knew fatigue when I was pregnant; then I got Parkinson’s. Someone on here described it as "wading through wet cement." To that I would add, "while wearing a lead suit." Neupro patch was a game changer for me. Shortly after starting it, one of my friends remarked, "WOW! I wish I'd taken a video of you 2 weeks ago, because the difference is AMAZING!"
  14. 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.
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