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  • troy

    Member
    November 27, 2023 at 9:46 am in reply to: Clonazapan

    Hello, I take Clonazepam for REM sleep disorder (.5 mg). The first few days it made me extremely groggy. Eventually it became more tolerable, and I have no issues now. My sleep neurologist did caution me to never stop taking abruptly as that can lead to an epileptic seizure. For myself, the pros outweigh the cons.

  • troy

    Member
    September 17, 2023 at 1:02 pm in reply to: Experience w/ Clonazepam

    Thank you all for your replies. I saw my sleep neurologist on Friday and started 0.5 mg of clonazepam a night (beginning last night). I slept through the night without issue. Thanks again.

    Best wishes,

    troy

  • troy

    Member
    August 29, 2023 at 3:01 pm in reply to: Do you feel that Parkinson’s is a lonely disease?

    Yes. All the responses here ring true. People don’t know/can’t see all that’s happening and how horrible I feel on the inside or what I look like when meds aren’t working. Remaining positive while persevering through it all is full time work.

  • Yes- I struggle. I try to put reminders on my pc at work. But now I deal with urgency issues (new development- awesome), so my motivation to stay hydrated is sort of dwindling.

  • troy

    Member
    June 15, 2023 at 4:23 pm in reply to: Humor and Parkinson’s disease

    Hi Ally,

    We’ve been streaming According to Jim on a nightly basis, and it has me lol-ing on a nightly basis. There’s no single episode or moment; it’s all good. I agree that humor is the best medicine- if I need a good laugh, I’ll stream Seinfeld, Johnny Carson/David Letterman/Conan O’Brien, or Bob’s Burgers. In my opinion, the only medicine better than having a good laugh is giving one. I love to get people to laugh!!!

  • Hi Mary Beth,

    I’m a minister with YOPD and I’ve responded well to levodopa, though we are seeing progression. Most days, I would say I’m not ready (and I’m too young) to retire (I love where I’m at). Today, I don’t feel good. Ugh…

  • troy

    Member
    May 28, 2023 at 4:03 pm in reply to: Personal growth and Parkinson’s

    Hi Ally, I’m learning to be more contented with reality as it is, rather than striving for reality as I’d like it to be. Since I can only control how I respond to PD, I’m learning to apply this rule of reaction to all elements of my life; even the things I can (and sometimes will) change. If I can be content with my body (reality) while having PD, then I can learn to be content with most other things, if I choose to.

  • troy

    Member
    May 4, 2023 at 2:52 pm in reply to: Do you spend a lot of time outside? Why or why not?

    I think I’m late to this party, but yes, I spend as much time outside as possible. It makes me happy. A native of southern California, I’ve had to limit my time outdoors now that I’m in Phoenix (18 years). I just can’t get the California out of me, though, so I do whatever I can to be outside. Recent article on the benefits of green spaces and water for people with PD has me second guessing Phoenix as my place of residence. We might join one of my daughters in Florida when we retire. Dry + hot + scorpions vs. humid + hot + bugs = hmmm? Disney World might be the deciding factor 🙂

  • troy

    Member
    April 20, 2023 at 3:21 pm in reply to: Why do you think Parkinsons patients have nightmares?

    Hi Mary Beth,

    I have this too- as Steve mentions, it’s REM Sleep Behavior Disorder and a symptom of synucleinopathy. My MDS sent me to a sleep neurologist who diagnosed me, and then had me do a sleep study to confirm. In my first RBD dream, I dreamed I was Bruce Lee, doing a slo-mo Matrix kick over a car as I took on the bad guys. Woke up kicking my poor wife in the side! Down comforter kept me from doing any damage. We bought a Bruce Lee “flying kick” t-shirt to commemorate.

    I now use a weighted blanket and I respond well enough to my last dose of L-dopa, along with mirapex, to keep me from acting out (NIH did a study on L-dopa working for some patients with RBD). But as things progress, I imagine I’ll have to start taking clonazepam (I’ve just recently started to act out while asleep in the car- last fight was with a rhino). I do not respond well to melatonin.

  • troy

    Member
    February 20, 2023 at 2:00 pm in reply to: Hair loss & peeling of the face

    I was experiencing heavy hair loss while on immediate release Carb/Lev. Switched to controlled release and changed up my vitamin routine and the loss has slowed, so now I don’t know which to chalk it up to :/  Either way, I’m happy about it. I’m also dealing with sebum and seborrhoeic dermatitis at the same time (eyelids, nose, etc.). Have topical medications for both. The flaking is controlled but the sebum is a little more tricky to deal with.

  • troy

    Member
    January 10, 2023 at 2:48 pm in reply to: Humor and Parkinson’s

    Yes- I am quick to laugh and I do have a dark sense of humor. Fortunately, my wife is the same way. We joke about my stuff around family and friends and this allows everyone to feel at ease and sometimes, they’ll even join in on the fun (like my Mother-in-law asking me to carry the unset jello casserole to the fridge- HA!). Would never joke around someone else with PD, unless I knew it okay to do so. PD aside, I’ve always approached life with humor. If I stopped now, I’d be allowing my symptoms to control me more than they already do. Not happening. BTW: Tom, I joke that the title of my book will be called “Shaking…Not Stirred.” Great!!

  • troy

    Member
    October 11, 2022 at 3:50 pm in reply to: Non-Motor Symptoms in Parkinson’s Disease

    I deal with depression, anxiety and sleep disturbances. I am taking mirapex (along with the l-dopa) to help with the acting out of dreams, and ever since I started the mirapex, I haven’t noticed much depression. Still dealing with anxiety, though.

    Also have skin issues (sebum/seborrhoeic dermatitis), which a dermatologist is tending to with a few additional prescriptions.

  • I like to research. A few times I’ve read about something that a few months later I found myself experiencing. The more I know, the more comfortable I feel. I don’t overshare with my family though; they want to take things day by day and so I understand and respect that. A positive aspect of EOPD is that I feel like I’m able to plan/prepare for the future.

  • troy

    Member
    September 20, 2022 at 6:33 pm in reply to: Long term Levodopa use

    Hi Ron,

    Hugh puts it very well. My “it’s so easy, even a caveman can say it” explanation that I usually give others is that eventually, our loss of ability to produce dopamine outpaces the effectiveness of the levodopa.

    I have EOPD and started l-dopa before 50 without hesitation. I also am on Mirapex. I’ve included a link to a video from the Fox Foundation which helped to put my and my wife’s fears about long term l-dopa use at ease.

    https://youtu.be/QyBGAuhBYzA

     

  • Hi Lyn,

    Thank you for the info and sound advice! Dehydration is more problematic for sure; I’ll be steadfast in keeping those reminders reminding!

  • Hi Mary Beth,

    Yes- Levodopa, Mirapex and Lyrica. On a positive note- feel good today! Thanks!!!

  • troy

    Member
    June 4, 2023 at 12:21 pm in reply to: Personal growth and Parkinson’s

    Hi Ally,

    As a minister serving as a chaplain in an ecumenical and secular context, I feel like I’ve read a zillion texts on the topic. All have inspired me as I strive for contentedness as part of a healthy spiritual life. But frustration always follows when my inspiration does not translate into doing and then into fruit. And so, I have learned (for myself) that I have to deliberately, moment by moment, choose to accept a situation as it is (deep breath and jump to the final stage of grief -acceptance- immediately!). I might work to improve the situation, but as soon as my aversion to the situation or the end goal (improved situation) becomes an attachment, I’m toast. It’s an ongoing battle between me and my tendencies (which existed before PD was dropped into the mix). It’s easier said than done, but it can be done. Or so they tell me 🙂

  • troy

    Member
    October 9, 2022 at 1:26 pm in reply to: What’s your weirdest symptom?

    Hi Mardi,

    I’ve encountered the same exact experience in the shower with eyes closed. I slipped a few weeks ago and manged to catch myself with my elbow on the wall. I now use a shower chair to lean against so that I maintain my balance. It’s been very helpful. I also have standing low blood pressure, which I guess is common with EOPD and so I use an abdomen binder so that I don’t get lightheaded/dizzy throughout the day. I don’t know if the two issues are related.

  • troy

    Member
    October 3, 2022 at 10:49 am in reply to: What’s your weirdest symptom?

    Hi Sherman! You have had some amazing dreams! Scorpion dream would have sent me off the deep end. I’ve been attacked by dogs and I think pushed out of a moving vehicle. Last week a friend and I were mocking the Los Angeles Angels (long story)! That one had no action but the passion alone woke me up, half off the bed. Haven’t fallen out yet and aside from the now controlled kicking, only punched head board thus far. Like you, no dreams or remembrance prior to PD.

    Thanks for the helpful info and cheers!

  • troy

    Member
    September 27, 2022 at 8:22 pm in reply to: What’s your weirdest symptom?
  • troy

    Member
    September 27, 2022 at 3:37 pm in reply to: What’s your weirdest symptom?

    Hi Sherman,

    My very first RBD dream involved me dreaming I was Bruce Lee, who, though extremely awesome, was well before my time. I knew of him, saw a movie or two on TV, and that was it. My wife and I both woke up to me kicking her in the ribs (I was dreaming I was doing a flying kick). This was prior to diagnoses and so we had no idea what was going on. I’ve since bought a t-shirt with Bruce Lee doing a flying kick to commemorate the occasion.

    In my case, l-dopa + Mirapex and a weighted blanket has helped most. But if I don’t take enough l-dopa, the Mirapex isn’t as effective. I don’t respond well to melatonin, for some reason, though I wish I did and know many that do. It’s amazing the similarities that we all experience and for myself, so helpful to learn of different experiences and solutions, etc.

     

  • troy

    Member
    September 25, 2022 at 4:04 pm in reply to: What’s your weirdest symptom?

    Thought I would share an update with regard to this bothersome symptom: with excessive oil + flaking, mostly around my eyes/eyelids, I finally paired up with a dermatologist who is now treating me for the sebum and seborrheic dermatitis. She’s prescribed three topical solutions that I’ve just started using. If I see a drastic improvement, I’ll share the info. Keep up the good fight, everyone.

  • troy

    Member
    September 21, 2022 at 12:49 pm in reply to: Are you able to sleep through the night?

    Hi Susan,

    Thank you for the info. Sorry for the late reply :/

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