Troy

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.

Hi Gary,

I’ve heard a lot of these stories. Psychosomatic, FND, etc. My perception is that if a doctor hasn’t seen something in a previous patient with PD, they are quick to move onto other possibilities.

I have early onset and so my symptoms initially looked different than an 80 year old with PD (the kind of PD patient doctors are used to…[Read more]

I take magnesium and potassium every day. Not only does the magnesium help with cramps, it also helps with other PD misery. I have found the Nature’s Best Magnesium gel capsules (400 mg; 150 count) to work best for me. I purchase the bottles at Sam’s Club or Costco (I have found them at both places).

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]