Troy

Hi Kerrie,
This sounds like dystonia, which I experience. In my case, the levodopa helps and I really only experience it again if I’m having an off period. It may be that your levodopa dosage needs to be increased?

Absolutely! I listen to, play and create music not only as an outlet for creativity, but also as a coping mechanism. I’m a lifelong Beatles fan (born after they broke up) and so of course, they are my “go to” music when I want something to listen to.

As well, I’m a drummer and I write a lot of music and now, in our digital age, I find I’m able to…[Read more]

***Highland’s Leg Cramps supplement (Walmart). Took a couple last night 🙂

Thanks, George! Yes- I failed to mention that I do take magnesium as well (for a few different reasons), in addition to the potassium. I have found that Sam’s Club (and Costco?) usually offers a pretty good deal on magnesium, if it helps anybody. Have a great day!!!

***Also have dystonia in hands- don’t know if this is part of the same cramping that I experience in legs/feet or a different kind of cramping? L-dopa keeps it mostly under control.

Hello Mary Beth,

Yes- I cramp up a lot now, at least compared to what used to be normal for me. Every now and then, if I didn’t drink enough water, I’d cramp up in one foot in the middle of the night.

Now, day or night, even with enough water, I can cramp up in both feet, calves and hamstrings all at the same time. Sometimes, my toes cramp and…[Read more]

EOPD, transitioning from stage 1 to 2. I still drive, but am very uncomfortable when I do. After an accident (not our fault and I wasn’t driving) made us a one-car family, my wife now drives for the most part (we carpool to work). I’ve recently purchased an electric bike to help ease my transition away from the wheel, so to speak. Aside from work,…[Read more]

Hi Sandy,

Ideally, you want to get to a point where you are taking your next pill right when the last one is about to wear off. Some patients may be able to accomplish this with 3 or 4 pills a day and some with 5 or 6, etc. (and there are 25/100 mg pills and 25/250 mg pills). I think a lot depends on a person’s symptoms and how he/she responds to…[Read more]

I developed sleep disorder with eopd. The first time we noticed it was on vacation, and I woke my wife up kicking her in the bed. I was dreaming that I was Bruce Lee fighting in some kind of Matrix movie. Which was weird because I am not really interested in either, but I was doing some pretty cool stuff in that dream! We didn’t think anything of…[Read more]

The heat double edged sword for me: On the one hand, it makes me more fatigued than I already am, and I’m already too fatigued as it is! I find it discouraging to be my age (I have eopd) and be fatigued from doing absolutely nothing and then have the heat pile on just for the fun of it 🙂 On the other hand, the heat sometimes provides momentary…[Read more]

Yes. My wife noticed the depression before I did. It’s not severe and my doctor is not overly concerned. He suggested that I take up a new hobby that brings me joy, so I created a bird sanctuary in my backyard. It seems silly, but it has really helped. I’m also taking up bike riding again. I’ve only noticed the anxiety issues recently and the…[Read more]

4, over the course of two years. I initially feared the worst (ALS) and then began to suspect EOPD as doctors ruled out other diseases and tended to other possibilities (pinched nerve, etc.). Without my saying anything with regard to my own suspicions, my pcp began to suspect EOPD one year in (maybe sooner). The problem was that my non-motor…[Read more]

Hello; sleep is currently my biggest issue. We noticed a few things: 1) the “falling” feeling when drifting off to sleep, which usually sets me back about 45 minutes as I try to tall back sleep with all the adrenaline rushing through my body! 2) acting out in my sleep which typically involves running with my legs and thrashing side to side with my…[Read more]