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secret squirrel

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secret squirrel last won the day on March 18 2017

secret squirrel had the most liked content!

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About secret squirrel

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    Advanced Member
  • Birthday 01/08/1972

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    Tampa, FL
  • Interests
    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. secret squirrel

    Building a new home & looking for suggestions

    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!
  2. 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!
  3. secret squirrel

    Hello out there~

    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!
  4. secret squirrel

    Newly Diagnosed

    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?
  5. secret squirrel

    This works for me...what works for you?

    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!
  6. secret squirrel

    Scared about meds

    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.
  7. secret squirrel

    Morning Stiffness?

    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!
  8. secret squirrel

    Morning Stiffness?

    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!"
  9. secret squirrel

    Exercise makes me feel worse (at first) - normal?

    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.
  10. secret squirrel

    A question to ponder...

    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.
  11. secret squirrel

    Going from Mirapex to Neupro Patch

    This screen shot is pretty cool! Is this some type of app you use to track symptoms, meds, etc?
  12. secret squirrel


    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?
  13. secret squirrel

    Pill Fob Reviews

    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.
  14. secret squirrel

    Pill Fob Reviews

    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.
  15. secret squirrel

    Question on Facial Mask

    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.