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Saturday, November 12, 2022

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!.

Wednesday, August 25, 2021

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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Friday, June 4, 2021

The WEGO Health Awards

"WEGO Health is the Network of Patient Leaders
We believe these e-patients, advocates, influencers, and collaborators, are leading the charge in health. Which is why we refer to these individuals as patient leaders." (From their website)

I have been nominated for some of their awards over the years and even became a finalist once.

From 2013

From 2014

From 2018

From 2019

From 2020

                                                                    From 2021

So, what does all this mean? I'm not exactly sure.

I think I'm supposed to brag about it. Done  

I think I'm supposed to beg for endorsements but I'm not going to do that. 

The only reason I'm even writing this post is because maybe, someday, long after I am a medical students' cadaver (a future neurologist?) someone else with a chronic illness may decide that it is OKAY to write about their own experience using humor.

And that to me, is the best reward ever. 

Wednesday, July 29, 2020

The Parkinson's Doctor Will "See" You Now

Two days before my 60th birthday in March, everything in my area closed due to the novel coronavirus (covid-19.) Wonderful Hubby and I cancelled my birthday party and stayed home with my birthday present, Miss Kitty. 

Miss Kitty

Our monthly Parkinson's disease support group meetings were cancelled, so were the monthly social pizza parties. Those of us with chronic conditions (me) or over age 65 (everyone I know) all began self-isolating in earnest. A quilt-making friend made us some humorous face masks and we soon settled into a stay-at-home routine. 

Baseballs for WH, lipstick for me

I was concerned because I had not seen my Movement Disorder Specialist in over a year and  thought I might lose my current patient status. So I sent her a message saying that I wanted to remain a patient, but didn't know when I could travel to see her. My doctor replied, "As long as you are stable, we can wait, but call if you need me." I WAS stable and I didn't mind waiting a few months longer. 

In May, I got this email from my Medicare Advantage Plan health insurance: Due to the coronavirus, telehealth visits, video or by phone, with your primary care doctor and all specialists will be covered and all co-pays are waived. 

I read it again, and had Wonderful Hubby read it too. If I needed (or just wanted) to 'see' my Parkinson's doctor, I could do it right from my own home! To be honest, those 240-mile each way drives to Tucson for a 30-minute appointment were getting tedious.

In early July, I had some things I wanted to discuss with my Parky Doc, so I called and asked about a telehealth visit. My video visit was set up for July 21st and I'd receive instructions via text messaging on how to 'connect' with her via my smartphone. I had my notes all ready and found a well lighted place where she could watch me walk and do all those finger tap type tests. 

My smartphone

The afternoon of July 20th came and I received a call saying my appointment was being changed to just a phone call. This was okay with me.

The next morning, my Parky Doc called me, from HER home. She had some sniffles at work and was quarantining herself while awaiting covid-19 test results. That explained why we couldn't do video.

She asked about my current DBS settings and confirmed what prescription medications I was taking. I reminded her about my shoulder pain fix and my anxious toes. Then she said, now, what would you like to discuss? For the next 25-minutes, I had her undivided attention. We discussed my speech problems and had a laugh when I said I liked wearing a mask because it hid my drooling problem. I asked whether I should consider re-taking the cognitive exam and if so, could it also be done using telehealth. She said she'd find out. And we were done!

I really liked this type of visit. I wasn't tired or stressed out from driving 5 hours, I didn't have to spend a night in a hotel, and when it was done, I went into my kitchen and made my usual breakfast. 

I think I will schedule another telehealth visit before the end of the year. And I really hope that telehealth will still be available after covid-19 is gone! 

Sunday, April 12, 2020

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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Wednesday, January 8, 2020

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. 

Thursday, October 3, 2019

Parky Picasso

I did something completely abnormal for me the other night. I went to a Ladies Paint Night with a friend. Paint and I don't mix well, pun intended. Add in my dexterity problems from having Parkinson's disease and you know that any story involving me and paint is bound to be humorous. After all, my history with painting is awkward to say the least. 

When I was in elementary school, a group of us were invited to be part of a local PBS show where we would be painting a mural. It was a live show, which in today's world, would have been unheard of. About ten minutes into the show, I had to go pee and didn't know what to do or where to go. So I walked up to the presenter, tapped him on his elbow and whispered in his ear, and my whisper was promptly picked up by the microphone! You can just imagine the teasing I got at school the next day.

My next foray into painting was in high school. I was tired of being in the Marching Band and was looking for a different elective-type class to take. Home Economics had no interest for me whatsoever and Shop class was boys only. I didn't even consider Chorus after my disastrous sixth grade talent show performance. So I signed up for Art class. I lasted a week, before the teacher took me aside and strongly suggested I go back to Marching Band.

After that, the only painting I did involved paint rollers, gallons of paint, and lots of drop-cloths and interior or exterior walls of houses. I didn't even do the touch ups around the windows and doors. That part was always done by someone else.

So, when my friend Sandy invited me to go with her to a Ladies Paint Night at her church, I should have said no, but I shocked myself and said yes! I warned her that my painting might be the only abstract one in the group. She laughed. 

We walked into the hall, paid our $5 fee, grabbed a blank canvas, brushes of various sizes, containers for water and went and found a seat. The various colors of paint needed were already on the tables and foam plates to be used as our palettes. There were also clean up rags and t-shirts to keep our clothes paint-free.

This is what we would be painting this time:

The first thing we did was paint the entire canvas in the mottled background colors, including the sides. I used a 2-inch brush and had a very difficult time making the big strokes needed. Then we drew the circles for the faces and filled them in. We drew the outlines of the hats and chose our colors individually, so everyones was different. We were to use small, repetitive strokes for the beards, and that gave me lots of trouble (stupid Parkinson's) but I managed. 

Each part of the painting was divided into simple shapes; ovals for the eyes, noses and hands, rectangles for the sleeves and lantern, Hershey Kisses shapes for the feet. We worked on the top while the bottom dried and vice versa. 

The last thing we did was the highlights and outlines. The funny thing is the part I thought would give me the most problems, making thin lines, turned out to be the easiest. Two hours later, we were done. 

Can you find YumaBev?

We posed for a group photo and afterwards I asked the teacher if she'd consider doing a Parky Paint Night? It turns out she has her own Neurological disease, Multiple Sclerosis, but said she'd consider it.  

The one above the teacher painted during class.

And here's mine!
Parky Gnomes by YumaBev

Maybe this Parky CAN paint after all!!!!

I'm already looking forward to the next class. 

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Sunday, September 8, 2019

Charging This Parky

Since I opted for the Medtronic Activa™RC rechargeable IPG to control my Parkinson's disease symptoms, I have to charge it regularly. I've become just like a cell phone and no, I don't have a plug in my chest. Instead it works using the same type of technology that the wireless cell phone chargers use (something to do with magnets and coils.)

The charging system consists of three pieces:
The power cord

The transformer, which is one of those black boxes that always seem to be attached to anything with a battery, like laptops, karaoke machines, etc.

And the charger with antenna attached

The power cord connects to the transformer, which connects to the charger, which then charges the charger. Got it? 

Why do I have that children's song about Bones playing in my head? "The toe bone's connected to the heel bone, the heel bone's connected to the leg bone..." Sorry, it's my warped sense of humor.

When the charger is fully charged, it will stop charging, so it's okay to leave it plugged into the wall outlet when not using it. 

Before I left the hospital, Joey, the Medtronic rep, showed me how to place the charger's antenna over the IPG implanted in my chest and which buttons to use. The top green button starts the charging process. The middle black button with an X, stops the charging process. The bottom button with the speaker symbol on it, turns the sound on or off. The two buttons on the side don't get used with DBS. 

That's it! Green for GO, X for STOP. Simple!

Joey also gave me some adhesive disks that go on the antenna to help hold it in place on my shirt. If you use the stickies, the antenna should NOT be placed directly on your skin. I'm still using the first sticky! 

Placing the antenna properly takes a bit of practice in order to get the maximum number of 'bars'. Eight bars will charge faster than six, four or two. The screen refreshes every 60-seconds.

The antenna also has a dial which you can turn to get more bars. 

The charger will beep at you if the antenna moves and drops to zero bars. The charger will also beep when your IPG is fully charged.
Fully charged 

Since my settings are very low (1.4/2.0) I could probably only recharge once a month. However, the more discharged the IPG is, the longer it will take to recharge it. I charge mine every Sunday. I figure it's an easy day for me to remember since I've already filled my weekly pill box on that day.

How long does it take? I'm not sure. I charge while I'm watching TV and haven't thought to pay much attention to the clock. If it beeps, I check to see if the antenna has moved, and usually the beep is the 'fully charged' beep. 

Thursday, July 11, 2019

Cell Phones, iPads, Tablets, Laptops, YumaBev...Things That Must Be Charged

It's been four weeks since I had my Medtronic DBS for Parkinson's disease IPG (battery) replaced with a rechargeable version. The incision is completely healed and all the bruising is gone. Dr. Norton cut right along the previous incision so there's still only one little scar. In my opinion, it looks better than before. 
New rechargeable IPG

It certainly doesn't protrude as much as the previous non-rechargeable unit, and that is a good thing.


What else is different? Not much, except now I have become just like all of my electronic devices: I have to be charged regularly. 

My male friends have warped senses of humor and have suggested hooking me up to a Jump Starter or perhaps adding a super-charged turbo to it. They've also wondered what would happen if I got Tasered (I hope I never find out.) This is what happens when you hang out with car guys who are retired FBI, Military and Police, but they sure do make me laugh. 

The screen on my Patient programmer looks different. Instead of a screen showing the battery life in Voltage, it shows a percentage of how much charge I have left (much like Wonderful Husband's tablet.)
I have 75% charge left
I keep all our chargers in one spot. I keep my DBS Patient programmer there too.

Cell phone & tablet chargers & patient programmer

Now I just added the DBS charging system. It is kind of bulky. 

DBS charging system on the left

Medtronic provided me with a carrying bag. It might work okay, if you take out all the manuals and extra items you won't ever use, but it's bulky.

Medtronic DBS carrying bag

So, I did what I do best! I went thrift store shopping and found a cute little soft-sided bag with a zipper top for less than a dollar. 

YumaBev's cute little 'Charger' bag

Everything fits with room to spare and since it's see-through, you can easily to find whichever charger you need.

Plus the new little bag with everything in it only weighs a little more than the empty Medtronic one.

I'm all charged up and ready to go, just like the Energizer Bunny! 

Sunday, June 23, 2019

A Stitch in Time

It's been eight days since my Parkinson's DBS battery replacement surgery, and I have a follow-up appointment in Tucson. We overslept, so we quickly got ready and left Yuma at 7:15am. We had an easy drive with very little traffic. We had a very short visit with Mr. Brooks in the VA Hospital, then drove to Dr. Norton's office. 

I usually take my half a carbi/levodopa tablet AFTER I have my cereal with milk, but today, because we slept late, I took it on an empty stomach and I was now having noticeable dyskinesias in both feet. 

When I checked in, I was told I had no co-pay. That was a pleasant surprise. 

The Center had an Alzheimer's Awareness Month display with purple balloons, purple ribbons and purple frosted cupcakes. Another surprise.

We hadn't had any breakfast and we were hungry, so Wonderful Hubby and I each grabbed a cupcake. I ended up with purple frosting on my hands and face. No surprise there.

I was in the restroom trying to wash it off, when I heard Dr. Norton call my name. Yes, he comes out to the waiting area to get his own patients!

I hurried out and Wonderful and I walked back to his exam room with Dr. Norton. 

"Did you get your device?" Dr. Norton asked.

Device? I'm thinking to myself, what is he talking about? Then it dawned on me, he was asking about my old IPG. Yes, I said, I got it that same day.

"I see you are having some dyskinesias" Dr. Norton said.

"I told you he'd notice" Wonderful said.

As I sat in the exam room, I asked Dr. Norton if all his DBS surgeries are as humorous as mine. 

"Only yours" Dr. Norton says, chuckling, "only yours." 

Wonderful says,"I was stuck out there in the waiting area worrying, and you guys are having fun, it's not fair."

Before Dr Norton removes suture

Dr. Norton snips the knot off one end of the suture and grabs the other end with tweezers and gives a gentle pull. It comes right out. He holds up the 3-inch long piece of blue suture and says, "looks like fishing line, doesn't it?"

He grabs his Medtronic DBS programmer, checks everything and asks me if I want him to lower the settings to calm my dyskinesias. 

After suture is out

I say, no, I'll be fine after I eat. 

I tell Dr. Norton to check out the blog stories, he says he will, and we are done. 

YumaBev & Dr. Thomas Norton

As we are walking out, he says "I'm here if you need me, if not, I will see you in 15 years." 

That's a deal, I say. 

On our way home, I manage to pull off the highway and snap a picture of a saguaro cactus that looks like it's waiting for a hug. A very nice surprise.

The Hugger Saguaro

We got back home at 6:15pm: a 475 mile, eleven-hour day for a 10-minute appointment. Was it worth it? YES. No surprises there. 

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