Forum Replies Created

  • tim-rinehart

    Member
    March 31, 2022 at 8:48 pm in reply to: Should I start Levodopa right away?

    Hi Ron, I am 63, diagnosed at 59 and take Azilect to hopefully slow down progression. I still have periodic tremor in left hand but I can still tie my shoes…so happy me.
    I’m in mode of holding off on CL till I can’t do things with my left hand as I’m concerned about possible hallucinations.
    As for sleep, I get good sleep. I’m mostly a back sleeper and heat my side of bed before going to sleep and I use several layers to help create a weighted blanket. Laying still crossing my hands seems to calm the tremors and I sleep thru the night. On the flip side, I like the room a bit cooler, 68F which helps offset effect of all the blankets.

  • Mine started on non-dominate left side thumb perhaps 4- 5 yrs ago, I brushed it off as ET, which my older brother and sister have.  Stress of building new home about 2yrs ago seems to have kicked tremors into high gear the way it feels.  Now left side hand only, and if I keep busy and stress low, off periods are minimal.  Take 1/2 azilect tab per day mainly for remote neurodegenerative protection.   Doesn’t make much difference in tremor when I’ve gone off it for one reason or another

  • tim-rinehart

    Member
    November 8, 2019 at 5:59 pm in reply to: Where do you live?

    North Georgia mountains, 2 hr north of Atlanta.  Been here 3 yrs, prior to that Charlotte,  North Carolina

  • tim-rinehart

    Member
    November 8, 2019 at 4:17 pm in reply to: At what stage were you diagnosed?

    Jean, Not familiar with her or research.  I opened the link, but couldn’t get it to calculate.  May just need to try a different browser.   Thanks for the link.  The survey looks pretty thorough it seems with most common issues.

  • tim-rinehart

    Member
    November 8, 2019 at 3:15 pm in reply to: What PD symptom impacts your quality of life most?

    Jean, totally get the take it and hope. I hope to for any number of breakthroughs: Halt progression, halt and repair damage/wiring, next wonder drug to be “Platinum standard “ of care vs C/L.

    I might be among those who could take a low to moderate dose of C/L for a long time without complications , but being 60, too many potential years left, and still able to do most anything except deal with stressful situations.

  • tim-rinehart

    Member
    November 8, 2019 at 2:55 pm in reply to: At what stage were you diagnosed?

    I would like to believe part of the reason for understanding where a patients PD is (stagewise or any somewhat objective measure), is to better understand PD and the correlation from one patient to another.  Having a broad pool of folks (like us + the rest of the PD community in the world ) who can share what works, what doesn’t and what worsens symptoms is invaluable, especially when large pools of folks can add their input and place into some category for better reference to help others .  Hey, a person can dream, right!

     

  • tim-rinehart

    Member
    November 8, 2019 at 2:37 pm in reply to: At what stage were you diagnosed?

    To answer thread questions, my doc I’m seeing about 2x yearly, and he’s not given me any rating as I recall, only that I’m still early.

    Id have to believe I was in earliest stage when diagnosed, but I may have to review the definition for earlier stages.

  • tim-rinehart

    Member
    November 7, 2019 at 7:39 pm in reply to: What PD symptom impacts your quality of life most?

    For me it’s tremors in my left hand.  The only med I’m on is Azilect, and while it doesn’t completely eliminate my tremors, it gives me hope I can prolong period till I need LDopa.

    If I’m busy in my workshop, tremors all but gone.  But, if someone shows up and especially if a stressful situation pops up, they can come back mild to ferocious. A few deep breaths or perhaps grab a worry stone from my pocket and things ease up.

    Toward end of day, sitting on couch, typically they come back mildly especially when I remember I have PD

  • tim-rinehart

    Member
    November 7, 2019 at 7:18 pm in reply to: Do you still have your sense of smell?

    Sense of smell not lost on everything but can’t appreciate the outdoors smells like honeysuckle in bloom and other smells.  Been that way for a while, probably never realized till my wife with hyper keen smell would ask my about some smell and I just shrugged my shoulders.

    Had septoplasty and polypectomy about 6 weeks ago, hoping to regain some smell but will settle with better breathing.

  • tim-rinehart

    Member
    November 7, 2019 at 7:07 pm in reply to: Do you drool?

    Occasionally, perhaps once or twice a month.

  • tim-rinehart

    Member
    November 7, 2019 at 6:56 pm in reply to: At what stage were you diagnosed?

    Ally and others, my primary symptom is tremors in my left hand, my non-dominant hand fortunately.  My hobby for last 10 yrs is woodturning and other woodworking.

    When I’m working with my hands and jamming to classic rock or modern country music, there are no tremors, no PD for the most part.  To destress in general, I go off into a zone of doing something, could be woodworking, cutting and splitting firewood or taking the tractor out for some chore.

  • tim-rinehart

    Member
    November 7, 2019 at 3:25 pm in reply to: At what stage were you diagnosed?

    Jeffery, I echo your response.  I was diagnosed almost 2 yrs ago, and the combination of factors in my life at that time seem to have advanced my symptoms as I recognized light tremors beginning almost 4-5 yrs ago.  I retired recently and that along with other stress reducers (finishing a new home after taking control from our contractor) has made my progression seem moderate at this time.