Troy

From the MJFF; found this to be timely.

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.

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…[Read more]

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…[Read more]

Hi Susan,

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

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…[Read more]

Yes- one of my earliest symptoms was acting out in sleep. The first time I was dreaming I was Bruce Lee, doing some sort of flying kick over a car; my wife and I woke up when I was kicking her in the side. Initially, L-dopa and a weighted blanket helped, but I was eventually put on Mirapex, which made a drastic difference. I still wake up…[Read more]

Fatigue. Difficult to know if I’m dealing with it as a symptom of the PD in and of itself, side effect of L-dopa, side effect of Lyrica (given for pain), side effect of Mirapex (given for REM sleep disorder- PD symptom) or due to the general lack of sleep (PD symptom). Probably a combination, which makes it difficult to address. Sometimes I want…[Read more]

On the topic of strange symptoms, is anyone dealing with excessively oily skin? I started dealing with this last summer and found that it is indeed a common PD symptom (I have early onset). It’s mostly around my eyes and then gets in my eyes, which is awesome. I use witch hazel throughout the day and I’m trying a special soap which is drying out…[Read more]

Hi Toni,

Yes- I have developed the wild startle reflex as well. Crossing paths with people unexpectedly, dropped silverware, etc. The worst is any kind of “out of the ordinary” noise if I’m asleep or close to asleep on the couch. I jump and all four limbs reach for the sky, like babies do when they are awoken out of a deep sleep. It’s quite…[Read more]

Hi Susan,

Wow- I’m amazed at how many people I speak with who have PD related sleep issues. I’m happy to report that my doctor has added Mirapex (dopamine agonist) to my regimen and it as helped tremendously. While I still have wild nights, I’m doing better than before.

You got it!

Hi Clive!

🙂 I can’t draw either. I’d love to paint, but I just can’t. I do create music and I am a drummer (despite my lack of coordination). I can still drum, but I’m noticing that now my hands start to cramp/tighten up while doing so. But as long as I can push buttons on my computer, I will attempt to create! I may write a gut-wrenching ballad…[Read more]

Hi Clive,

I’m sorry- stay strong. I have noticed that while some senses are being impacted negatively, I do have a heightened sense of creativity, which is a positive.

Hi Mary Beth,

If I’m taking my levodopa regularly, I’m usually ok. If I forget a few pills or I’m in a stressful situation or stiff (from sitting a long time), it’ll happen even when I’m on my regular dose.

Hi Clive,

The same exact thing has happened to me WITH coffee; same year as diagnoses. I did chalk it up to PD because I have read of similar things happening to others (can’t remember if it was coffee). A coffee drinker my entire adult life, I now choke it down in the morning and then drink tea the rest of the day. There are other drinks/foods…[Read more]

Tiptoes. Sometimes I just go up on my tiptoes while I’m standing and sometimes after sitting for a while, I’ll get up and my right foot will be on tiptoe while my left foot will be mostly normal. Sometimes it only lasts a moment, but I’ve had it last almost an hour. Don’t know if it’s dystonia related, but I also have typical dystonia in my hands-…[Read more]

Thanks! It’s not difficult at all, though it can feel a little overwhelming at first due to all the options. And when I take too much time off from it, I forget how everything works! But you can’t really mess anything up and I strongly recommend for the fun!

Hi Mary Beth,

I use GarageBand on my mac and a midi keyboard. I’ve included a YouTube link to one of my songs, just in case you’re brave. My friends are honorary band members 🙂 The important element for me is being able to have fun and express creativity. Thanks!

I no longer sleep through the night. I never had issues until PD; now, I act out, thrash, etc. We use a weighted blanket to help keep me in place and to keep me from kicking my wife. I typically wake up multiple times throughout the night and by 4:30 I’m up, because my tremor is up too. All PD related.