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Sunday, July 31, 2011

Someone to watch me, Parkinson's Disease on video

Parkinson's Disease requires ME to tell my Doctors how I am doing and I need someone to tell me WHAT I am doing.  Sound confusing?  It isn't really.  I know how I FEEL but don't know how I LOOK, unless I fill my house with mirrors or set up cameras everywhere and that would be a humorous reality show. 

It sounds crazy, but except to comb my hair in the morning, I never SEE myself during the day. I didn't have a clue what I really looked like, until this weekend.  I set up video camera and recorded myself doing my normal things.....using computer, watching TV and walking.  Boring stuff.  Until I watched them. 

I never knew my right foot does a weird snake like dance in the air when I try to do anything with my right hand.  I had no idea I was walking with my arm flailing outward.    I know my arm gets jerky in the evenings, but didn't know the amount it jerks depends on the intensity of what I am watching on TV.  Criminal Minds?  Jerks like crazy.  An old black and white comedy?  Very little.  I had no idea I was sitting there watching TV every night with my mouth hanging open and my head cricked to one side.

It was scary seeing myself, and also educational.  According to my Wonderful Husband, I don't make these movements all day, just at certain times, and some are worse than others.  He says sometimes I sit quite still.  It looks painful, but isn't, so at least that's one thing to smile about.  The other plus is all the extra calories I burn. 

PS: I don't have these extreme movements all day long, just when my medicines are at their peak.  YES, these jerky movements are side effects, only the last one, mouth hanging open is caused by the PD.

You can find all my videos on my YouTube channel: 

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from or your favorite online book seller. Thank you and have a Happy Parky Day!


  1. Very interesting. I have been on meds in the past, but decided that the side effects are worse than the PD symptoms, for now anyway. But we sure share the same walk! Good idea, making an objective record of our "progress," rather than relying on a subject view. Carol

  2. Bev, that's a very interesting insight. Thanks for sharing it!

  3. A friend of mine was trying to take my picture one time. She was using my camera and wasn't familiar with it. The camera was on movie mode as I was trying to explain to her how to operate the camera. When I saw the movie clip I thought "wow"! No...not what a handsome lad I am, but wow, do I ever move around a lot! My leg was flailng about, my head and upper body were twisting about and my face went in and out of a surprised look. At the start of a sentence I would cock my head and close my eyes. I watched that video over and over thinking wow, that's how others see me!


  4. My DBS programmer often told me that I was dyskinetic and I didn't know it- I thought I was sitting quite still. I finally persuaded hubby that I needed a new laptop with a webcam, so I've been doing video diaries. I do move a lot more than I thought I was. And my voice is really croaky. A couple of years ago I asked her for the videos of some of my testing, so she sent me a walking test. I can't put it on public Youtube because of copyright laws, so I put it as private:

  5. I too have it some days are better than most. I chose to stop the meds cause of the side effects causing me problems. Learning new things every day bout this is helping me cope.

  6. What a great idea, I should make a video of me at my worst for my doc to see. I always seem to be doing good at appt time.

  7. You are brave for watching that. I have been curious about my appearance since dxd ten years ago, but I didn't want to become self conscious so I avoided that experiment. One weird symptom I had from beginning, even before I started taking levodopa; any time that I walk and yawn at the same time, I get a strong tremor in my right arm for the duration of the yawn. Otherwise, tremor has never been very noticeable. Strange but true.

  8. During my last visit, my neurologist copied my 'walk', strange mirror-effect

  9. Thanks YumaBev for showing us what we are missing. I'm going to a new neurologist tomorrow. I'll be walking like you, but with no left arm swing. Parkinson's stinks! I am glad I lost my sense of smell, lol. Trish

  10. G'day YumaBev, I did the same as yu, I needed to know what I looked like when I had bad day, good days and inbetween days. Must say scared the hell out me. October 2018 out of the blue I began having 'Cluster Headaches', never had such things in me life. Got hold of my neuro and he told wife get me to Dr fast and try some medications they had that would help. He told wife they called them 'Suicide Headaches' because many people couldn't go through life with them. My last one was on New Years Day 2019 at around 10am, be free since. During these headaches I told me wife if I had a gun I would have ended it all, but instead we had my video camera, I knew it was hell that I endured, but wasn't until I saw the video of the whole thing that I saw myself bashing my head on the table, grabbing hands full of hair trying to pull it out. Things I never knew I was doing. Scared me lots to view video after it was all over. So from time to time we set up video camera and use the videos to send to my neuro so he has record on how I'm travelin'. Will the headaches return, he doesn't know so its a wait and see adventure, but very glad they have gone that is for sure. We found out of all the medications that were available good old bottled oxygen was the best way to handle them. Yes videos now and then can tell ones Neurologist how one is going from time to time, never a pretty sight but very helpful ll the same. Take Care, Stay Safe and Travel Safe Bev, Hooroo for now.