Forum Replies Created

  • fyrkit10

    Member
    January 18, 2023 at 8:38 am in reply to: Wondering About Azilect?

    Hi all,

    Very informative thread! Happy to hear about the possible neuroprotective benefits of Azilect/rasagiline

    I have had PD for 7 years…Minimal tremors, but have stiffness and slowness and my gait is off.

    My MDS suggested Rasagaline a few years back when I balked at the idea of increasing my C/L for fear the dyskinesias would increase with the dosage . At that point, the only meds I was on was 5 C/L (25/100)  3 times a day…2/1.5/1.5, but I was doing a dyskinesia dance when I flossed 🙂 and other silly movements  (L foot tapping) that I wasn’t enjoying… I also didn’t really notice any major changes except the floss dance lessened…still tap the L foot.

    We are now experimenting with Amantadine (2x/day) for the dyskinesias and akathesia is becoming an issue (weird ‘restless arm’ feeling)..seems to help with both, but now having sleep issues…  hating the buildup of my med arsenal as with it comes additional side effects…sigh.  I AM eager to try the Stanford vibrating gloves as a possible therapy discussed in another thread in this newsletter though!

     

     

     

  • fyrkit10

    Member
    December 30, 2021 at 3:13 pm in reply to: Best Mattress for PD?

    Unfortunately, it isn’t a one-size-fits-all purchase. Like everyone, I too suffer from difficulty turning in bed – Thank you PD! 🙁

    The silky sheets suggestion is a smart one for starters. Hand/support bars can be useful too.

    My hubby and I have completely polar preferences when it comes to mattresses. He likes them soft, I prefer firmer options. We have been getting twin mattresses and using king fitted sheets to stay connected. We have tempurpedic with adjustable bases and it is still hard to move even on my ‘firmer’ side. Recently, we replaced a mattress at our cabin with the same type of bases and much softer memory foam. He LOVES this, but it’s even harder for me to move in the softer mattress  – but it IS quite comfortable. Our solution will be grab bars which we have yet to install…I figure I’ll be getting an upper body workout first thing in the am 😉

    Best wishes in finding a solution that works for you.

     

     

  • fyrkit10

    Member
    November 17, 2021 at 7:17 am in reply to: Collagen supplements

    I’ve tried collagen three times.  I am having issues with my hips that may be connective tissue related (tendons and ligaments) and though the docs don’t attribute it to my PD, I was hoping that the collagen would help. Sadly, it doesn’t seem to have made a difference. The first time, I tried Great Lakes, the second time Vital Proteins Collagen peptides, neither with any noticeable benefits. I just finished a third round with Bubs Naturals because I got a free sample through Whole30 and figured maybe third time’s the charm…well, with this brand, I am noticing my nails seem slightly stronger. I may continue with their product just in case it needs a little more time.

    I say give it a try. Personally, I’d rather try supplements than more prescriptions with additional bad side effects.:)

    I DO find Vitamin D (5,000 MTU) and B vitamins particularly helpful for my energy. I also take glucosamine chondroitin.