Just Call Me David

David is my next older sibling. He is three years older than me. He was my only playmate when I was little. If he was born in today's world, he would have been designated as autistic/non-verbal. 

But back in the early 1960's, they called him retarded and left his family to figure it out. He went to a special school for atypical children until he was 18. As far as I could tell, they taught him absolutely nothing. I think he may have been the only student there without Down Syndrome. This is David at age 29; he looks normal doesn't he?

I taught David to write his name in crayon. I taught him to tie his shoelaces and button his shirts. I taught him his numbers up to 10, that's all the fingers he had. I taught him to ride a bicycle. 

His vocal cords worked because he could laugh loudly. He would laugh at funny jokes and he seemed to enjoy watching TV. He had a great sense of humor. 

He was NOT stupid, he just couldn't get whatever words he wanted to say to come out of his mouth. His two favorite things were firetrucks and Coca-cola but all he could manage to say was truh and coe. He called me beh, and when I asked him his name, all that came out was dah. No one ever considered trying to teach him sign language. We just didn't know any better. 

All those decades of being trapped in a world where no one understands you must have been extremely frustrating for him. I understand it now because I have become like David. 

Due to Parkinson's, I can NOT write legibly. I can no longer sign my name. I know my vocal cords still work because I can laugh loudly. I know exactly what I want to say but it's a major struggle for me to get out a single syllable. And what does come out is soft, slurred and unrecognizable. I no longer answer the phone. If I can't use chat to take care of business, I ask Wonderful Husband to do the speaking. And it's frustrating to me. But at least, I can still type. So, please...

Just Call Me David 

I have a sense of humor too. 

When Flights Go Wrong

We took a vacation trip to Florida and had a great time with family and friends. Then it was time to go home.

Once we got through TSA, I rearranged the carry-on luggage, putting our laptops, zip-lock bags of toiletries and our Passports away, since we wouldn't need them anymore. All was going well, until we got to the gate. Anxiety level 1. 

It looked like all 200+ passengers were already there, crowding around. Anxiety level 2.

Hubby had his hands full with ALL our carry-on luggage, so when he asked me to follow him through the crowd, my brain decided that I was NOT going to be able to move my feet. So I closed my eyes and stumbled through the crowd. I tried to get someones attention to ask to board early but no luck, not that they could have heard me. Anxiety level 3.

And to top it off, there were 5 or 6 TSA type agents, all with big dogs on leads that were sniffing everything.  I'm going to admit that I am afraid of big dogs. Not that they will bite me, I'm afraid they will knock me down or I will trip on their leads. Please don't hold this revelation against me. Anxiety level 4. 

The TSA agents wanted to see everyone's travel approved ID's, again, and our Passports were  in one of the bags, so we dug out our Driver's Licenses and hoped it would do. Thankfully, it did. Anxiety level 5. 

One of the agent's waved Hubby through and he walked past the sniffer dogs and then waited for me. They waved me through and my feet refused to move. I tried to ask for help but couldn't make a sound, so I just reached my hand out and a gloved hand took it. I stumbled through the dogs and Hubby and I headed down the ramp. Anxiety level 6.

When I got to the plane, the tiny gap to get ON the plane was, in my Parky riddled brain, a HUGE step and I froze, again. Anxiety level 7.

Hubby helped me get on the plane and we got seated. The flight hadn't even started and I was completely exhausted and fighting to keep from crying. Anxiety level 8.

We always get aisle seats across from each other, so I can get up during the flight, and Hubby is there to help me. This particular flight was full, but I could still get up, walk to the bathroom and back. Getting IN the tiny airplane bathroom was difficult, getting OUT was a nightmare of epic proportions. Anxiety level 9.

I haven't even begun to describe the back pain I deal with due to the twisting of my torso (look up Parkinson's Pisa Syndrome) Or how the person sitting behind me kept jabbing me in my lower back with her foot. Or how I am afraid that luggage will hit me on my head when people are in a hurry to get off the plane. Anxiety level 10.

PS I want to say a special THANK YOU to the young man who sat next to me: Brady Saxton, an Automation Technician at Axon in the Phoenix area. He talked to me during the flight. He showed me videos of what he does at his job, and racing his drift cars and we discussed pick up trucks, gear ratios, traveling and the scenic places I thought he should go see. Everyone else was glued to their devices with earbuds on and the plane window shades closed. I said that most would be oblivious if their was a UFO outside the plane. He made the flight bearable for me. And for that, I thank him, again. 

When Flights Go Right

Flying on an airplane with its narrow aisles, cramped seating, lack of overhead bin space, along with 200 or so strangers can NOT be enjoyable for anyone. There's no humor to be found. Add in all the variables of Parkinson's disease symptoms and even IF everything goes right, it's still not fun. 

Take for example, my Parky friend Jimmy Choi, who has competed on American Ninja Warrior several times. Jimmy should have ZERO problems when he's flying. But he has uncontrollable movements like tremors and dyskinesia. And because he doesn't want his wiggling, squirming and shaking bothering the strangers next to him (or get him thrown off the flight) he will TRY to stay perfectly still; which requires ALL of his concentration. So he ends up being exhausted when he gets where he's going. No fun for him. 

I don't have any noticeable tremor because the DBS surgery I had in 2012 is still doing its job. And I don't have dyskinesia because I don't take any Parkinson's medications. But that doesn't mean flying is easy for me. On a recent flight to Florida, most everything went right. 

Going through the TSA screening is always scary for me, I know they don't understand my DBS "brain pacemaker" and I'm concerned that it might get accidentally turned off. Thank God, I don't have to take my shoes off anymore. But trying to get my jacket off, put the right items in the bins, not falling down and then getting everything back together again when there's a line of people waiting behind me and grabbing their stuff, just makes me want to go back home. 

I try to get early boarding, if I can get to the gate in time and get the attendants attention. My voice is almost gone and the few words I CAN get out, make me sound like I'm drunk.

I also have trouble going DOWN ramps, so walking the jet bridge is an issue. Even stepping across the tiny gap in between the jet bridge and the plane is a problem. My Parkinson's riddled brain perceives it as a huge gap. All of this and I haven't even got ON THE PLANE yet!   

Trying to maneuver down the narrow aisle is difficult, and that's with the plane empty. 

I would love a window seat, so I could look out the window, but we choose aisle seats across from each other, because I need help to get up from sitting. I cannot stay seated for very long. Even at home I am up and down, up and down. 

On a recent trip to Florida, even though the flight went right, there were times I wish I could have traveled some other way. I wonder IF this is available? 

Now, that would be FUN! 

Parkinson's Fun House in the Daytime

I toddle towards the hallway bathroom, up on my tiptoes and go in to brush my teeth. I'm leaning up against the waist high vanity because it's easier for me to reach the sink. To exit the bathroom, I need to move my left foot over my right foot, like doing the Vine dance step, which I used to do without thinking in my dancing queen days. But I stumble and almost fall.   

Note to self: that doorknob I bumped into is going to leave a bruise. 

I toddle towards the other bathroom to get in the walk-in shower which has multiple grab bars. Wonderful Husband, bless him, always stays nearby; in case I fall or need help getting out of the shower. Only after I'm dressed for the day, will Wonderful Hubby get his shower.

We head to the kitchen to get breakfast, I'm walking flat-footed, taking what I think are normal length steps when Wonderful says STOP and LOOK at YOUR FEET. My left foot is pointed straight ahead but the right foot is pointed outward at almost a 90° angle! I am shocked to see this. I didn't have a clue. No wonder I can't step over the right foot with my left without stumbling. 

As the day goes on, I pay close attention to how I walk, and am surprised how often I'm up on my tiptoes and taking tiny steps. My feet are getting stuck to the floor more and more often especially if I'm carrying anything. I find myself grabbing doorways, the counter tops or the back of a chair to keep from stumbling when my body pitches forward as if the floor is slanted downward. The worst is when I walk into the kitchen corner or go to look out a window, I can't back up! I really have to try to figure out HOW to get turned around without falling. If Wonderful Hubby is near, I can just reach out my hand and he will come rescue me. 

The only consolation is that IF I can get OUT of the Parkinson's Fun House, out in the open, I can generally walk just fine. So, is it all just a visual optical illusion, like the hall of mirrors in the carnival fun house? I don't know, my Parkinson's specialist doesn't know, does anyone know? 

In the meantime, I'll try to keep moving forward while staying upright. Adapt, adapt, adapt. 

The Parkinson's Fun House

When I was a teenager, I used to love to go to the Central Florida Fair. I always enjoyed going through the Fun House. The slanted and uneven floors, dead ends and optical illusions were enjoyable and the distorted mirrors were always good for a few laughs.  

These days though, it seems like I am living in a Parkinson's Fun House 24-hours a day... and I am having trouble finding humor in this situation. Let me explain:

Imagine your feet are roped together but not tightly, that you have powerful magnets attached to the heel and ball of each foot and there's a button that makes you walk up on your tiptoes, some times just one foot, some times both feet. You have NO CONTROL over the length of the rope, when the magnets might be activated or the tiptoe buttons will be pushed. 

So here's what happened last night: 

I wake up at 230 in the morning because I need to go pee. I sit on the edge of the bed and slowly slide off because I don't know what 'feet' I'm going to get. As I grab the top of the heavy dresser next to the bed, I slowly stand up. 

I try to take my first step and find out that the rope between my feet has been shortened to mere inches and the right toes button has been pushed. I grab the edge of the bed and am taking tiny steps with my right foot up on my toes. I get to the end of the bed and need to turn left. 

I am able to do that but now both feet are up on my toes and I am still taking tiny steps. I just need to get across the open area between the bed and bathroom doorway. A distance of about 36 inches. 

That's when my whole body pitches forward as if the floor is suddenly slanted downward and luckily I manage to get there without falling. 

As I try to go through the bathroom doorway, both feet are stuck to the floor as if the magnets have been activated. I get my left foot loose and flat on the floor. Then I force my right foot to release. I almost fall, but catch myself by grabbing the sink. 

After I am done in the bathroom, I have similar trouble getting through the doorway, however once through, I can take the three normal length steps back to the end of the bed with both feet flat on the floor. As I try to go around to my side of the bed, the tiny steps start again and I stumble into bed. It takes me awhile to get back to sleep.

Now it's 530 in the morning, daylight has lightened the room and I have to go pee again. You'd think it would make it easier with the room being bright and some days it is but today isn't one of them. I sit on the edge and slide off grabbing the dresser. As I turn to walk to the bathroom, I catch my reflection in the mirrored closet doors and I freeze. I can't get either foot to move so I sit back down.

I take a few deep breaths and try again. This time I don't look at my reflection but then I realize that Wonderful Husband isn't in the bed. So now I have to figure out which bathroom he's in and go to the other one. 

I manage to walk to the hallway bathroom and both feet cooperate. On the way back to bed, my left foot goes up on my toes and I kinda bump into the walls on both sides of the hallway. I'm so used to my right foot being up on my toes that I don't even notice it half the time, unless the rope between my feet is too short. 

Instead of going back to sleep, I just laid there thinking about how I can explain this phenomenon to my readers. 

Then it was time to get up for the day. My body is quite relaxed while I am sleeping but if I stay in bed after waking, I stiffen and it becomes painful to bend and move due to arthritis in my back and hips. 

I slide off the bed and wonder if my feet will work, they do, kind of. I'm walking on both tiptoes but the rope length is allowing me normal stride length. Thankfully I made it through the night shift without falling, crashing into anything or getting hurt. 

I toddle off to brush my teeth, get my shower and get ready for the day shift in the Parkinson's Fun House, which I will write about another day.

 

 

Charge Me Up Like A Tesla

It's been five years since I had my Medtronic IPG replaced with their smaller, thinner rechargeable one, which should last another ten years. I'm glad I did.  Otherwise, I'd be trying to find a new neurosurgeon to replace the regular one, since Dr. Norton retired a couple years ago. I don't want any more surgeries; even though my last surgery made for a very funny Parkinson's Humor blog story

So, how has it been being like a Tesla auto; having to be charged regularly? The first charger I had was tricky to position and took longer to get me to 100%. 

The new charger is a drape that holds a puck which I hang around my neck once a week and I get a full charge in about 45 minutes. It's simple and easy.

 

And since the charger for the 'puck' has a USB cable, I can charge it in a car, at the airport or even on a plane! Which means I can charge myself ANYWHERE, even while riding in a Tesla! 

I have a reminder alarm set on my cell phone, but I'm already charging myself when it goes off. In the last five years, I haven't forgotten even once. Yippee! 

So, now to the title of this story:

Back in 1993, the late country music singer, Joe Diffie released a song called Prop Me Up Beside the Jukebox. I used to sing it at karaoke many years ago. Well, I came up with new lyrics and they're about charging ME! 

              Charge Me Up Like a Tesla

Well I ain’t afraid of Parkinson’s, I got a bionic brain

And with that IPG in my chest, my life is almost sane

I’m careful not to bang my head, or break my wiring

All I really have to do, is just one simple thing

Charge me up like a Tesla and I’ll drive

And unlike a Tesla, I can walk, laugh and rhyme

When I’m on my vacation, I can do my own navigation.

Charge me up like a Tesla and I’ll drive

If I forget to charge me, like a Tesla, I can’t move

But I can charge me in my car and be back in the groove

I recharge like a cell phone, it just sits on my skin

I’m glad I’m not a Tesla, don’t know WHERE they’d plug me in

Charge me up like a Tesla and I'll drive

And unlike a Tesla, I can walk, laugh and rhyme

When I’m on my vacation, I can do my own navigation.

Charge me up like a Tesla and I’ll drive

My speech may be slurred, but my brain is working fine

I wrote this little ditty, in under an hours time

Charge me up like a Tesla and I’ll drive

And unlike a Tesla, I can walk, laugh and rhyme

When I’m on my vacation, I can do my own navigation.

Charge me up like a Tesla and I’ll drive

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Talking In Your Sleep

This song by The Romantics was popular in the 1980s:

When you close your eyes and go to sleep

And it's down to the sound of your heartbeat

I can hear the things that you're dreaming about

When you open up your heart and the truth comes out   ......

I hear the secrets that you keep

When you're talking in your sleep

What does this have to do with Parkinson's disease? And why am I quoting song lyrics in a humor blog? Please read on. 

I think it's fair to say that all of us have a fear of finding something in our bedroom when we are asleep. For me, it's stinging critters because I have had bad allergic reactions. For Wonderful Husband, it's rodents, of any kind.

I used to "sleep-walk" as a child. Once, I showed up at my elementary school, FIVE blocks from home, early in the morning, still in my pajamas and freezing cold. Luckily, the principal was there, recognized me and got me back home safely. I had no memory of this event the next day, other than thinking it was a dream. 

Fast forward about 25 years and Wonderful and I are traveling around the USA in our camper. I woke up yelling that there was a rat running along the wall on my side of the bed. Wonderful was wide awake immediately and turned on every light looking for the rat. It seemed so very real and neither of us got back to sleep. Rat traps were purchased and set nightly for at least a week and we slept with the lights on. We never caught the rat. Had we been thinking rational, as dark as it was in our bedroom, there was no way I could have seen a white tiger, much less a dark colored rat. It was a dream. 

Over the years, I would often talk, or squeal in my sleep. Wonderful would nudge me, tell me it was okay and we'd both go back to sleep. 

And then I got diagnosed with Young Onset Parkinson's and learned about REM Sleep Behavior Disorder. Instead of experiencing the normal paralysis of your arms and legs during REM sleep, you end up physically acting out your dreams. Lots of things from my childhood began to make sense. 

About ten years ago, I was turning over in bed and felt a stinging sensation on my left side of my face. I sleepily brushed something off my pillow and immediately woke up yelling and threw the pillow across the room. We now lived in Yuma, Arizona where there are scorpions that can crawl into bed and their sting can cause problems for people who are allergic. People like ME! 

Wonderful was wide awake, trying to calm me down, looking to see if I'd been stung, and also looking for whatever was in bed with us. I took a benadryl and we stripped the bed, looked everywhere, and were awake the rest of the night. Well, he was awake. The benadryl knocked me out and I slept on the couch. We never knew whether it was real or another dream.

In the years since, I am acting out dreams more and more. Often it's the same dream; I'm being chased by a dog and I'm running away. I'm sure this has to do with my childhood encounter with a German shepherd, who jumped on me and knocked me down. So far, I haven't hurt Wonderful with my flailing limbs. 

But in the last year or two, I've been ending up on the floor. The first time, I was dreaming of pleasantly sliding down a hill on a cardboard box. I ended up scraping my back on the mattress platform and needed help getting up off the floor. 

Then I was dreaming of scuba diving and I rolled off the edge of the 'boat' and landed with a loud thud on my knees next to the bed. I blame this one on my Medtronic friend Joey, who had recently posted vacation pics online.

Another time, I dreamed that I had forgotten to say my prayers and again ended up on my knees on the floor. 

One time, I was hitting Wonderful with my pillow, I don't remember why, and he wasn't too happy. Maybe I was just having a pillow fight?

I've been lucky that I seem to be acting out pleasant dreams. Let's hope it stays that way.

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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The Fifteen Year Anniversary of My Parkinson's Diagnosis

The 15th anniversary of me finally being diagnosed with Parkinson's disease (August 2007) came and went without any fanfare. I was too busy to even think about it. I was 2300 miles away from home and my normal daily routine was completely screwed up. In fact, the only thing that kept me sane, was my sense of humor. I laughed a lot during those five hectic weeks.

We had flown into Orlando, Florida very late on August 3rd. My stepdaughter was having major surgery and would need MY help afterwards. Her home isn't large enough for four adults (Her, her son, her dad & me) so we stayed at a nearby Airbnb. We only had a few days before her surgery but we were able to get over to the beach, once.  

First I had to learn the idiosyncrasies of her car. Then I had to get used to the Orlando traffic and be able to get to the hospital and back in the dark while driving in the daily thunderstorms. I hadn't been in Orlando in over a decade and back home in Yuma, it rains so little, I don't even know how to turn my wipers on!   

Most days we left the Airbnb before 8 am and got back after 11 pm. For five weeks, I was her nurse and pharmacist. I helped her get into and out of bed, bathe, braid her hair and get dressed. It wasn't easy but I just did what had to be done. By the way, the surgery was a success and she is doing great.

So, other than that, how am I doing 15-years after diagnosis? Well, according to the experts back in 2007, I should be in a wheelchair or using at least a walker. I should be showing signs of cognitive impairment. I should be taking tons of Parky medications around the clock. 

But I am none of those!

I still walk unaided. I still drive. 

I can still do the daily Wordle in less than 6 tries. 

I take care of all the family finances. I do our income tax returns myself. 

And I haven't taken any Parky medications since shortly after I had my DBS battery replaced in June of 2019. 

I'm not perfect though. 

I drool a lot because my mouth is always open. Wearing a mask in public solves that embarrassing situation. At home, I'm kind of like a slobbering dog. Woof! 

And my speech is getting much worse. I know exactly WHAT I want to say, but it's a struggle to get the words out clearly and in complete sentences. Even Wonderful Husband has difficulty understanding me. The louder I try to speak, the worse both the stuttering and slurring get. The funny thing is, I can whisper into my Google speech keyboard and it will generally type exactly what I say. 

My right foot tends to freeze (feels like it's stuck in glue) especially in areas where the flooring changes or if there's clutter or tight spaces. This was a huge problem in Orlando and almost caused me to fall many times. The Airbnb had 5 different types of flooring and not much room to maneuver. Put me out in the open, and my foot never freezes. 

I have been working with my DBS programmer to try to fix these freezing episodes. I only see him every few months and unfortunately for me, changes don't take effect right away. So he's long gone before I know whether it's an improvement or not. 

All in all, I'm doing pretty darn good. I wonder what to expect in the next 15 years? One thing for sure, I'm going to keep on laughing. You should too!.

The Hunger Games, Parkinson's Style

For most of my life, I woke up hungry. It didn't matter if I ate a large meal right before I went to sleep. I'd still wake up hungry. There was never an argument about who got to use the bathroom first; because I was going to eat before I did anything else. If I could have figured out a way to have my bowl of cereal with the cold milk in it on my nightstand, I would have gobbled it down before I even climbed out of bed. I always ate within ten minutes of getting up. Always. 

Cereal on nightstand

Then came my Parkinson's diagnosis and a carbidopa-levodopa (Sinemet) prescription that needed to be taken as soon as I woke up AND on an empty stomach. The medication made me feel a bit queasy so my cereal got delayed by an hour and I lost a few pounds.

A few years later, I started taking a dopamine agonist along with the Sinemet. Soon after, I found I was hungry for sweets and I gained a few pounds.

Then I had my DBS surgery and stopped taking the agonist and my hunger for sweets slowly disappeared. However, I kept gaining weight. How much? Almost 15 pounds!    

Prior to having the DBS surgery, I heard stories from others that weight gain afterward was common. My Parkinson's specialist confirmed this phenomena, but didn't know the exact reason.

Then I realized that I was NOT waking up hungry. In fact, I never felt hungry. I was eating because my Wonderful Hubby would say it was time to eat. If I had extra milk in my cereal bowl, I'd add more cereal, but not because I was hungry. Instead of eating a few potato chips, I would eat the whole bag but not because I was hungry. I'd just keep putting more servings on my plate until everything was gone. Not only did I not feel hungry, I wasn't ever feeling full either. No wonder I was gaining weight! The part of my brain controlling hunger and fullness wasn't working correctly. 

Was the DBS to blame? Maybe? 

I had to do something. I started to control my portions. No extra cereal for breakfast. I count out my potato chips. I allow myself one low calorie healthy evening snack, usually oatmeal or a frozen fruit bar. I am now back down to my pre-surgery weight and I'm still never hungry. 

Looks like I won the Parkinson's Hunger Game! 

PS Has anyone else with DBS experienced the same thing? 

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