Bevy Does Botox

The three middle toes on my right foot had been curling down for years. It used to only happen occasionally, then more often. I found a temporary fix by taking half of a .5mg alprazolam pill used for anxiety daily. However, that fix wasn't working anymore. 

My toes were curled down all the time, even when I slept. They had gotten to the point where I couldn't straighten them out anymore. I had developed callouses on the tips of those three toes. The nails were thick and being pushed upwards from the constant pressure. Some days, walking was extremely painful.

My toes back in 2020

Then I happened to watch a video replay of a Zoom program from the great folks at PMDAlliance.org about botulinum toxin injections uses in Movement Disorders. Here's a link to the video on YouTube:

Botulinum Toxin Injections for Movement Disorders

Dystonia! That was what was causing my toes to curl down, and there was a potential fix. Great! Now all I had to do was get an appointment with a Movement Disorder Specialist who I would trust doing this type of injection. There was only one name on my list; Scott Sherman MD.

I had NOT been his patient for years (because of insurance issues) but I reached out to him via email and he said make an appointment thru central scheduling. I got an appointment at the end of July 2022. I was hoping to get an injection on that first visit, but unfortunately for me, he had to get insurance authorization first. 

I had a tentative appointment for the first injection two days after I got back from the trip to Florida. The first injection worked well, and I have gone back for subsequent injections in December 2022, March, June and August 2023. The callouses on the tips of my toes are slowly disappearing but the thick nails still look awful. And even with the "Botox" injections, those three toes are still not straight like they are on my left foot. 

When I told him what I was going to call this story, he burst out laughing! 

Telling him that, while he was doing the injection was probably not the smartest thing I have ever done. But making your Movement Disorder Specialist laugh out loud, and catching it on video, was worth it!

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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. 

Parkinson's Disease and My Foot

My left foot goes crazy almost every day around noon.  If I'm walking across a parking lot at the time, it can be a problem.  When it happens, it's called dystonia by the Parkinson's Disease Doctors, I just call it cramps. (read my Parkinson's Lingo story)

Just toes or whole foot

Sometimes my whole foot tries to turn itself inside out and other times, just my toes curl under.  The cramping itself isn't very painful, but my foot doing somersaults inside a shoe is, and trying to walk on it is extremely painful, even barefoot.  I usually try to sit down and wait it out.  If I catch it soon enough, I can sometimes stand on my tippy-toes and stretch it out or place my bare foot on the cold tile floor (which distracts my brain) and make it go away sooner.  

Little feet, big slippers

I have a hard time getting my shoe off my foot.  I am trying to balance on one leg and wrangle a distorted foot out of the shoe. For that reason, I wear oversize boot-type slippers around the house.  My feet are small and yet I wear big slippers that make me look like Big Foot.  I keep telling you that you've got to have a sense of humor to survive Parkinson's Disease.

Clicking on a picture enlarges it

Most of my Parkie friends get similar cramps.  If they happen first thing in the morning, it's most likely because our brain has run out of medicine while we were sleeping.  I used to get painful leg cramps that would jerk me awake.  I ended those by taking my last dose of medicine later and doing specific stretches right before bedtime.  I also increased my intake of potassium rich foods.  

The foot cramps I get now are most likely caused by too much medicine in one side of my brain.  I have Parkinson's Disease symptoms on both sides of my body, but my left side is the least affected and therefore, the muscles get over-stimulated and my foot cramps. 

Most of you know, by now, that I like to write song parodies (read I Re-write the Songs  ) so, of course, I wrote a song about my foot cramps. It's called The Bendy Toe Blues and clicking on the > below will play it for you. Enjoy!

You can find all my videos on my YouTube channel:

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

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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!!

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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!