Shoulder Pain with Parkinson's

My shoulder problem began more than two years ago when it was time to put on my pajamas. I went to take my pullover shirt off, using the two-handed crossover method I'd used all my life and...OUCH!

There was a pain in my left shoulder joint. I reached back with my left hand to unhook my bra and another OUCH!  

I tried to remember if I had done anything unusual recently but there was nothing. When I went to put my left arm under my pillow for sleeping, this was also painful, so I slept on my right side all night. 

By morning, I was a grumpy Parky. I could find no humor in this situation. I didn't want to aggravate my left shoulder, so I chose a button-up shirt. I was careful not to raise my left arm too high or behind my back.  

Thinking that it might be a Parkinson's disease rigidity problem, I tried taking more carbi/levodopa. All that did is cause more dyskinesia. I tried increasing my left side DBS settings, but that didn't help either. 

I made an appointment with Ana, my primary care provider. She did an exam and suggested trying a course of methylprednisolone and gave me some exercises to try. I went back 6-weeks later, nothing had changed, so she gave me a cortisone shot. This didn't work either. 

I made an appointment with an Orthopedist that Ana recommended. He took x-rays of my left shoulder  and it was normal. A month later, I had a CT scan with contrast done on my left shoulder. It was also normal (of course.) 

He said there MIGHT be a small bone spur that's causing the problem. He suggested exploratory surgery, but I declined. So he gave me a cortisone shot in the left shoulder and said if it doesn't work, come back when you want surgery. This cortisone shot didn't work either and there was NO WAY I was going to have someone go digging around looking for something that might not even exist. I would just continue to be careful how I moved my left shoulder.

Then June 2019 came and I had my DBS battery replaced. I increased my DBS settings on my right side because my right foot was dragging. The small amount of carbi/levodopa I was taking, half a 25/100 pill every other day, caused severe dyskinesia. I cut back to twice a week, then once a week, and finally stop taking it completely. 

YumaBev with arm behind back

Shortly thereafter, without thinking, I reached back with my left arm to unhook my bra and there was no pain. I reached my left arm above my head and no pain! Yippee!!  

YumaBev with arms raised up

I asked my Movement Disorder Specialist when I saw her in December if my left shoulder problem could have been caused by the carbi/levodopa?

Yes, she said. You probably developed what is known as levodopa-induced dystonia. Isn't that interesting?? Just what we Parkies need...another medication side effect. 

How do I explain Parkinson's Disease to a ............. Cat ?

Cat is a beautiful young lady from West Virginia, USA, who contacted me through Twitter and asked if I could answer some questions about Parkinson's Disease.  I said yes and the emails began, but there was just one problem, Cat is blind, she has been since birth, so describing Parkinson's Disease became a challenge. 

Cat and I have some things in common:  We both have a wicked sense of humor, she wants a T-shirt that says "Don't stare at me, I can't stare back" and I want one that says "What's shaking? besides me?".  We both like Michael J. Fox and would like to meet him someday.  She refers to him as Mr. Fox, because her parents taught her manners and I refer to him as Michael J, because I am older than him. 

We have our differences as well:  She is shy and self-conscious about her looks and I am definitely not shy and don't give a hoot what people think about me, but that comes with age.  I am old enough to be her Mother.
   
Cat "reads" what's on her computer by using software that vocalizes what is on the screen, kind of like Books on Tape.  She read some of my early blog stories and her question was about tremors, were they caused by the Parkinson's or the medicines we take and what is the difference between tremors and dyskinesia?  (There's that really big word, again) 

The first part of the question was easy, tremors are caused by the Parkinson's.  Describing the difference was going to be harder.  This is what I came up with:  

Tremors are like when your hands shake because you are nervous or scared and can be similar to shivering or having the chills when you get a fever.  Shaking hands or fingers can be stopped by sitting on them or if someone else holds them still.

Dyskinesia or The Wiggles, as I call them, are caused by the medicines we take to stop the tremors and are sort of like trying to hold on to a squirming child that does NOT want to be held.  You can't stop it!  If my wonderful husband grabs my moving hand and holds it still, the movement goes to my arm and if he holds both my arm and hand still, the movement goes to my upper body.  Your body is going to move, usually in a rhythmic fashion, almost like rocking, so I just go with it.  Fortunately, it doesn't last long, at least not for me.

A pretty good explanation, right? 


You can find both of us on Twitter, I am @YumaBev and Cat is @song_bird1987.  Give us a Tweet, but be sure to mention this story, so we know how you found us.

By the way,  if any of you know Mr. Michael J. Fox personally, please tell him we said Hello.

PS Cat says that she thinks she prefers blindness over Parkinson's.

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 Amazon.com or your favorite online book seller. Thank you and have a Happy Parkie Day!

Parkinson's disease Drug Side Effects

I am different than most Young Onset Parkinson's disease patients and that difference may explain my sense of humor.  I went eight years without a diagnosis or any medicines to relieve my symptoms and as I got worse and the Doctors kept saying "I don't know," I was still optimistic.  Just before diagnosis, my symptoms were very similar to Muhammad Ali, I was almost frozen like a statue (Liberty, Venus, David?), but I was still alive, whatever I had wasn't fatal, so what was there to be sad about?

Yes, it's a coffin.

Most Parkies take drugs early on, when a tremor is their only symptom and some don't realize they are getting worse, and therefore, don't appreciate how much the medicines are working.  Some even say "I'd have to quit taking them to tell if there is any difference."  I know, absolutely, that mine are helping me AND causing some of my problems.
 

They help my stiffness and shakes, but cause my sleepless nights and 2 really aggravating things: dyskinesia and dystonia, big words that are hard to spell and even harder to pronounce. (Parkinson's Vocabulary)

Dyskinesia is a dopamine side effect and is a jerky, dance-like movement of the arms, legs and or head.  In other words, I wiggle around like Michael J Fox.  I call it doing the "Parkie Disco" and I do a good job of timing the movements to music.

Foot cramp

Dystonia is severe muscle contractions and are also a medication side effect.  In other words, severe cramps that cause your foot to try to turn itself inside out and tend to happen while crossing a busy street!  These have been helped recently by eating bananas and doing stretches, advice I got from a Physical Therapist who took time to visit a Parkinson's Chat Room and answer questions we had (Thanks Barbara G). 

I was going to write a song parody about dystonia, to the tune of My Sharona, but haven't gotten around to it.  Sorry, now you have that song in your head, don't you?  You see, the whole trick is to figure out how to relieve some symptoms without causing worse ones and it's like standing on someone's shoulders as they ride a bike across a tightrope.  It ain't easy!  But it can be done!

Little Bev with watering can

I am lucky, so far, I have not showed any signs of the obsessive /compulsive disorders that plague many who take the medicines (Mayo Clinic - Parkinson's disease and OCD).  Unless, making people laugh is my OCD........nope, been doing that all my life!  So, Don't Worry, Be Happy!  Now you have this song stuck in your head instead!!

Clicking on the colored words will open a new window and take you to a different story or link


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 Amazon.com or your favorite online book seller. Thank you and have a Happy Parkie Day!

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:
https://www.youtube.com/user/ParkinsonsHumor 

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 Amazon.com or your favorite online book seller. Thank you and have a Happy Parky Day!