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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I Have Anxious Toes

Disclaimer: Before taking any prescription medication other than exactly as prescribed, you should ALWAYS consult your physicians. 

I have a confession; I always have a prescription bottle of 0.5 mg alprazolam (generic Xanax) in my medicine cabinet. It's used to treat anxiety and panic disorders and belongs to a class of medications called benzodiazepines which act on the brain and nerves (central nervous system) to produce a calming effect. It was first prescribed by my diagnosing neurologist, Dr. Zonis when my step-son Mark died suddenly in 2009. I took half of a 0.5 mg tablet a couple of times a day for a few weeks. 

Over the years since then, I sometimes take half a tablet if I am feeling anxious or stressed. If I have to drive to Phoenix, Arizona, I will take half a tablet to help me cope with the heavy traffic. I take a half when I venture into Mexico to see my dentist.

I do the same if I have to fly somewhere. Trying to get through the airport, dealing with luggage, security screening, retrieving e-tickets on my smartphone and delayed flights are very stressful. Once I'm on the plane, I'm fine. 

My Movement Disorder Specialist and my primary care physician are both okay with this minimal usage and either will happily write me a new prescription when needed. A bottle of thirty 0.5 mg tablets may last me two years. I don't get high, or sleepy, I just feel calmer. 

Now, about my anxious toes. For months, I've had a problem with the three middle toes on my right foot wanting to curl under. Not only is it extremely painful when walking but it also irritates the nails on those particular toes. 

Sometimes, I can walk on my tip-toes and trick them into straightening out but that doesn't always work. On those occasions, I just hobble along on my right heel until I can find a place to sit. It's very aggravating, to say the least.  

It's January 2020, and Wonderful Husband & I are invited to a two-day Parkinson's event in Phoenix. I take half a tablet and I drive to the event hotel. The next morning, I take another half because I will be driving back home later that afternoon. The following morning, I take another half because I will be taking a visiting friend across the border into Mexico. It's not the dentist that bothers me, it's the uneven walkways and the constant hawkers trying to sell me stuff that makes me anxious (the teenage looking soldiers with assault rifles are a bit unnerving too.)

Later that day, I realized that my toes didn't curl when I was in Phoenix for two days and they didn't curl the Mexico day either. Hmm, interesting. 

I contacted my Movement Disorder Specialist to see if this was possible or if it was a placebo effect thing. She said Xanax can have a muscle-relaxing effect in your brain. She advised me to continue taking it for a week and then stop for a week and let her know the results.

I took half a tablet every morning for the next four days. No curling toes! I stopped taking it for a week and the curling toes returned. I started taking it again and the toe-curling stopped again. 

I told her about my results. She wasn't surprised and wrote me a new prescription and so far, half a 0.5 mg tablet every morning is working. 

I'm happy and my feet are happy. No more anxious toes. Yippee!

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Pikes Peak adventure

We had been to Colorado Springs, Colorado several times, but never to the top of Pikes Peak, so it remained on my Bucket List until last week.  We had two choices:  drive up in our car, one way: 19 miles and 53 hairpin turns with no guardrails or we could sit back and take a narrated tour on the Cog Railway.  We elected for the train so we could both enjoy the scenery.  The narration was great but the guide's humor was awful.

Blue Spruce tree

I did not ask my Doctor whether the 14,110 ft altitude would affect my Parkinson's disease; I never gave it a thought.  I knew it would be cold up there, 30 degrees colder than where you boarded the train, so I packed two jackets each for my Wonderful Husband and me.  The ride to the top took approximately 1.5 hours and was absolutely beautiful, the aspens were bright yellow, the sky brilliant blue with white puffy clouds.  We saw deer, marmots, waterfalls, alpine lakes and my favorite tree, the Blue Spruce.  

Cabin at 12,129 ft

I felt fine, until we almost reached the top.  I had chosen the departure time to be the warmest part of the day, since cold aggravates my Parkinson's symptoms and to be in the 'best' part of a medicine cycle.  But all of a sudden, my left foot began to cramp and my neck stiffened.  I checked my pill container and yes, I HAD taken my pills right on time.  What was going on?  I should be as fluid as I get during a dosing period, but instead it was as if I hadn't taken any medicine at all.  By the time we reached the summit, ten minutes later, I was very rigid and both feet were cramping.  I felt like a 100 year old lady.

Only Big Horn Sheep I saw

I got off the train and slowly made my way into the gift shop and headed straight for the bathroom, along with every other woman on the train!  It took me forever to get there, shuffling along and of course, there was a long line, so I just took my place.  Soon someone was tapping me on my shoulder, it was an employee and she led me out of line and to a handicapped stall and said "I think this will be better for you".  I was thankful and a bit embarrassed.  I think some of the passengers probably thought I was faking, but I wasn't.  I could barely move. 

Posing inside a doughnut

After using the facilities, I managed to walk around a bit and snap some pictures, I ate a high altitude doughnut (yummy) and posed for a picture or two and then it was time (thankfully) to get back on the train for the ride down.  Once we got below the 10,000 ft point, I felt everything relaxing and the cramping disappeared.  I felt better by the time we reached the bottom, but was exhausted (your entire body contracting is very tiring).  We got dinner to go and went back to the hotel and went to bed early.

Proof that I was at the top

Would I do it all over again?  Absolutely!  The scenery was spectacular.  Just look at the photos, wouldn't you be willing to 'suffer' a bit to see something like this?

White tail deer

Lake Moraine

Aspens

Bev standing in snow

Pipe Falls

Snow at top

Minihaha Falls

More Aspens

Looking across valley

Down bound train

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!

Life simplified

If there is one thing Parkinson's Disease has taught me, it is that life is simple.  I used to have earrings, shoes and handbags that matched all my outfits, now I can't put the earrings in, I only wear Velcro sneakers and my purse is a fanny pack.  Simple.  

I used to put on eyeliner and mascara, but the Goth look isn't flattering on a 50+ year old woman, so now I don't wear any.  Simple.

My clothes were home made, designed by me, with intricate buttons and ties and fit perfectly.  No more, now its jeans, tank tops and blouses knotted at the waist.  Simple.

I used to order steak, rice pilaf and veggies at restaurants, I still order steak, but my Wonderful Husband cuts it for me and I stick to side dishes that can be eaten with fingers.  Simple.

I used to wear jewelry, lots of it, but can't manipulate the clasps now and I don't miss it a bit.  The same can be said for styling my hair, it gets combed and that's about it.  Simple. 

 My days start at 4 or 5 am and end at 11 pm, during those 18+ hours, I go through a range of symptoms and I make my life as easy as possible for me.  I have chairs that fit me, not some grand design, my floors are rug free so I don't trip, I have a set of lightweight plastic dishes that I use and my pill bottles are lined up on the counter next to the fridge so I can get to them easily.  Simple.  

My Wonderful Husband understands when I take a nap at 9 am, when he's just got up and made the bed at 8.  Our days are not regimented except for my meds.  We generally 'wing it'.  Simple. 

You should try it.

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!

What Parts of Your Body MIGHT be Affected by Parkinson's disease?

YumaBev's squirrel

Any part of your body you can voluntarily move MIGHT be affected by Parkinson's disease, as well as some parts of your body that move on their own. That doesn't mean they WILL be affected. It all depends on your squirrel in your dashboard. 

(If you are lost right now, read What is Parkinson's? ) 

An online Parky friend sums it up very well. She says that we Parkies are all in the same boat, we are just on different lakes. Some folks still have a working boat motor, some are using two oars, some just have one paddle and others are really "up the creek without a paddle." She has a sense of humor, too. It all depends on your particular squirrel, as well as the time of day and how long you have had Parkinson's. 


My day usually starts with a working motor and then settles somewhere between two oars and one paddle. I have been up the creek without a paddle, but it could be worse, I could be in the ocean during a hurricane!

So, what are some of the weird parts that can be affected?  
How about eye lids? Yup, we tend to blink less.  
How about curling toes? Sometimes they really curl under or up, sometimes it just feels like they have and they are perfectly straight.  
How about your bladder? Yes, I said bladder. You know the commercial for men with prostate problems, talking about difficulty starting the stream? It can happen with Parkinson's.  

I know this because it happens to me. I feel like I really need to "go", but can't get it started. So, I used a trick learned from the Alzheimer's people. I hung pictures of waterfalls all over my bathroom walls and it works every time.  Why? It works because a different part of your brain reacts to photos. Just like some Parkies who have difficulty starting to walk, will do fine if they hear music or hum a marching band type song to themselves. Running water in the sink can help, too.

Every day is different with Parkinson's, but by the end of the day, I can always find something to laugh about. I hope you can, too, even if you are NOT a Parky. 

Yes, this is the Wonderful Husband

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 Parky Day!