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Sunday, September 9, 2018

Jury Duty with Parkinson's Disease

The notice arrived in early May. It was a juror questionnaire form, asking me to respond online. I could have asked one of my doctors to write me an excuse but I did not. I think I would like to serve on a jury. I never have. The notice said I may be called any time after July 1st.

On August 11th, I get my Official Summons in the mail. I am to report at 8:15 AM on August 20th. I am a tad bit excited. Maybe it will be a murder trail, or a bank robbery or something else interesting. 

Here comes the Judge...Jury Duty Summons

Soon I realize that I will have to get up early enough to take my thyroid pill on an empty stomach, wait 30 minutes to eat my breakfast, take my Parkinson's disease pill and get dressed in business casual type clothes. My typical hot weather attire of shorts and tank tops are not allowed.  

I also hadn't factored in the thirty minute drive down there or what I was going to do about my second meal of the day. On a normal day, I eat breakfast around 10 AM and then Wonderful Husband cooks us a big meal which we eat about 2 PM and at night we have a salad, or cheese, or snack on some fruit. All of a sudden, Jury Duty was losing its humorous appeal.

The morning comes, I get up when the alarm goes off at 6 AM, get ready, and pack a peanut butter sandwich and fill my Yeti cup with ice and water. Since Wonderful Hubby and I are together 98% of the time, we only have one cell phone, so I leave it at home with him. The other 2% of the time, one of us is using the bathroom (hee-hee.) I park in the courthouse garage, grab my sweater (in case it's cold in court) and walk to the entrance. It's 8 AM and already 90° outside. 

Yuma County Courthouse

I walk through the entrance doors and feel like I'm at the airport screening. People are taking off their belts, watches and emptying their pockets. Bags, briefcases and purses go through the scanner and people walk through the metal detector. I stand to the side and tell them I have a pace-maker type device. It's easier than trying to explain my DBS implant. I get the hand wand treatment instead.

I show my ID and sit down in a large room with about 250 other people. There are TV screens everywhere, all tuned to a channel devoted to houses; remodeling, selling or buying bigger homes. After 10 minutes of that, I am bored, so I people watch instead. There are twice as many men than women and more in their 40's than in their 20's. I see one obviously very pregnant lady with a toddler in tow, two people on crutches and only a few with gray hair. There are quite a few with tattoos, piercings and bright hair colors of blue, green or purple.

A bailiff comes in, asks everyone to stand and introduces the Judge. The Judge has us all raise our right hands and puts us all under oath. He then tells us it will be a medical malpractice civil trial (yuck) and they hand out forms for us to fill out. After we fill them out, we can leave. If we don't hear anything, we are to report on the date listed on the form.

I realize now that I have a problem, my handwriting is so terrible, I can't even read it myself. Most of the pages have yes or no boxes to check, so that's okay. Then there is a page with the trial dates listed; three whole weeks in September and early October. They want to know if I am unavailable on any of those dates and if so, why. I don't have our cell phone with the calendar on it, so I don't have a clue what may be scheduled a month from now. I can't remember what I'm doing tomorrow or next week without checking my calendar! 

I see the first Monday in October is listed and realize that's our Parkinson Support Group meeting day. I manage to scribble why I can't serve on that date. I also scribble that due to Parkinson's, I'm not sure I could be in court every day, from 8 to 5 for three weeks in a row. By the time I finally get the form done, all of the other 250 people are in a line to leave. I am the very last person to hand my form in. I ask the bailiff to make sure he can read my Parkinson's scribble. It's only 10 AM and I'm on my way home and I am completely exhausted. What was I thinking?? I should have asked my doctor for a medical excuse. There's a huge difference between being at home all day and being in court all day. 

Once I get home and check my calendar, I find out  my step-daughter is coming to visit, I have a Doctors appointment and a teleconference all scheduled during those three weeks of trial dates. All I can do is wait and see. If I have to go, I will try to explain to the Judge why I didn't fill out the form when I was there. 

The phone rings a week prior to the trial start date, I don't recognize the number, so when the man at the other end begins to mumble quickly, I just hung up. I did a Google search on the number and realized it was the Court. I called back and was told that I did NOT need to report. Problem solved. Whew!

As much as I want to fulfill my civic duty and serve on a Jury, the reality is I can not do it, either physically or mentally. I would not be able to show up on time, for multiple days in a row and be able to stay alert. I would not be able to take handwritten notes and I'm no longer capable of remembering complex details. When it came to deliberating, I would not be able to express my thoughts clearly and would probably come across as being drunk, stupid or both. 

Looks like the Justice system will have to get along without me and that's okay. A criminal trial might have been interesting. A medical malpractice trial would have been sad and possibly made me angry. Neither would have been funny and if it doesn't involve humor, I'm okay with missing out. 

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Saturday, June 2, 2018

Hanging Out With The Guys

I'm not normal and I am not ashamed to admit it. I prefer to hang out with the guys. If given a choice of getting dressed up and going to a fashion show luncheon with a group of ladies OR putting on old jeans and a t-shirt and watching the neighborhood fellas work on a project, I'd rather watch the guys.

When I signed up for the World Parkinson Congress Buddy program back in 2016, I requested a male buddy; single or married, since my Wonderful Husband would also be attending. I got paired up with a lady from Israel, with 5 children and 6 grandchildren. (I have no children of my own.) She was into crafts, makeovers and fashion. As far as I could tell from our emails to each other, the only things we had in common, besides Parkinson's disease, was our age, DBS and a good sense of humor. We never got to meet in person, because she went shopping every chance she could.

My parents had three boys and two girls, but my Dad would tell everyone that I was his favorite son. He taught me to use all his tools, manual and power. He made sure I could change a flat tire, change my own oil and put new belts on my first car, a VW Bug. 

I always hung out with the motor-heads in High School. I didn't mind getting greasy, if I could learn how to fix my car. I learned how to drive out of a skid, what to do if you hydroplaned and how to do burnouts and donuts. I was a little daredevil in my teens. I got stopped doing 110 mph on a toll road in Orlando in my buddy Jim's souped up VW Bug. The officer couldn't believe a Bug could go that fast (the speedometer only went to 90.) I think he was shocked to find a 5-foot two, 87-pound blonde teenage girl behind the wheel. I got a scolding, but no ticket (Whew!)

When I married my first husband, it was ME who had to remind HIM to check the oil level in the car. And it was ME who had to find a replacement engine when he did not add oil when visiting his grandmother and the engine seized up on his way back home.

When I married my Wonderful Husband, he was aware of my tom-boy mentality and was glad to have a helper when we decided to re-do the back yard of our first house. Here's a before and after.

Before we started

After we were done!

I never shied away from doing the "men's" stuff all the years we were traveling around in the RV. I helped with sewer hoses and hooking up to the truck. I wriggled my way into a kitchen cabinet to put in a new fuse when the old one blew. If one of the other campers was working on his truck, I was right there with the guys learning.

Even now, I am a pretty decent mechanics mate. I know the difference between a crescent wrench and a box wrench. When my bright yellow Sonic was making a groaning noise whenever I slowed down or turned, I went online and figured out what the problem was; front sway bar links. The mechanics at the local Chevy dealer thought otherwise and ended up replacing the strut bearings and then the steering assembly (under warranty) before they finally listened to me and fixed it correctly.

Parkinson's has really affected my dexterity, so I can no longer fix things myself. However, that doesn't stop me from still wanting to learn. 

This explains why, every Saturday morning, I am at the Coffee Bean with a bunch of men, including my Wonderful Husband. This eclectic group of Corvette owners have been meeting here every Saturday morning for over 10 years. 

Can you find me?

Today there is a large number of guys and an equally large number of Corvettes parked out front. Some Saturday's there are only a few, it all depends on the weather or what chores they have to do after coffee. There are older cars and brand new cars and lots of in betweens. They talk about cars, guns, home  improvement jobs and other interesting things. Even though I am usually the only female there, I don't feel out of place and the fellas don't seem to mind. 

Uh, oh. What's that noise coming from outside? Sounds like a drill or some other power tool! 
Sorry, I gotta go. It might be interesting. 

Monday, May 21, 2018

I've Gotta Speakin' Problem

The title of this story reminds me of a country song by David Ball called Thinkin' Problem. The opening lyrics are: 
Yes, I admit I've got a thinkin' problem,
She's always on my mind, 
Her memory goes round and round, 
I've tried to quit a thousand times

My new lyrics would be: 
Yes, I admit I've got a speakin' problem, 
My words don't come out right, 
I sound like I've been guzzling beer, 
All day and all through the night

Hmm, maybe I've got the beginnings of a new humorous Parkinson's disease song parody? But the truth is, I never liked the taste of beer and I don't drink any other alcoholic beverages either. I have milk on my cereal and the rest of the day, I drink water. 

No matter how hard I try, I sound like I'm drunk. My upper lip just doesn't move like it should when I am speaking. Try putting a wad of gauze or a big piece of chewing gum between your teeth and your upper lip and then try talking. It isn't easy, is it?? And this isn't my only speech problem.

I also have a difficult time speaking in complete sentences. In some ways, my speech is reverting back to how you speak as a toddler. I will want to blurt out something like, "Hey, why don't we go to DaBoyz for lunch today" and instead it comes out, "Go Boyz lunch." It's extremely frustrating to me.

On top of those two problems, I also have a chronic frog in my throat, so sometimes the first few words I do get out sound scratchy. I am always clearing my throat. Add in a loudness issue and you can imagine how badly I sound. 

Then I saw an advertisement for a research study testing interaction via the internet with the SpeechVive device. SpeechVive is a device that you wear in one ear. It makes a babbling noise whenever you speak and stops when you stop. The premise is that you will speak louder because your brain will try to talk over the noise. Louder might also be clearer. I promptly signed up.  

I qualified for the study and they sent me a left-ear device, computer cords, a tape measure, a USB microphone, reading material, cartoons and instruction sheets. 

That black thing in my left ear is the device

I met with my online speech therapist in early January. Brianna had me set up the microphone exactly 12 inches from my mouth (hence the tape measure), take a deep breath and say Ahh for as long as I could. The she had me read a two page story about rainbows WITHOUT the device in. 

Then she had me put the device in my ear with the computer cord attached. She set the loudness of the babbling noise and adjusted when it would start and stop. 

Then she had me do the Ahh again and read the rainbow story again with the device in. I definitely spoke louder. Then I had to make up stories, lasting 2 minutes, to go with the cartoons provided. Who would have thought I would EVER have trouble talking for 2 minutes about anything??

I agreed to wear the device daily and to talk a minimum of three hours a day, even if it meant reading out loud to Parky Raccoon and his friends Miss Bacon, Jerry Giraffe and Parky Penguin. They mostly paid attention and didn't interrupt me too much. 

Miss Bacon, Jerry Giraffe, Parky Raccoon, Parky Penguin

I did as I was instructed and had friends ask me if the thing in my ear was one of those Bluetooth cell phones or if it was a hearing aid. I tried my best to explain that it was to help me speak louder, but I don't think they understood. Most people don't know that Parkinson's affects our voices, too.

After six weeks, I had another online session with Brianna. Again I did the Ahh and rainbow story with and without the device and I was louder than the first sessions. We did the make up a two minute story about the same cartoons and then she just had me talk for two minutes about any topic. I chose talking about the years my Wonderful Husband and I travelled in a RV. She gave me some exercises to do about the upper lip rigidity and I agreed to continue to talk 3 hours a day.

Six weeks go by, and I have another online therapy session with Brianna. Once again I do the Ahh and read the rainbow story with and without the device and my voice is louder. We do the cartoons and a topic of my own (this time I tell her about my flight stories.) At the end of this session, she informs me the research study is done.

A few days later, the research coordinator contacts me and wants to know if I want to purchase the device for my own personal use or return it. I choose to return it. While it did trick me into talking louder, it didn't help with the other problems I have. I mostly ended up sounding like a loud drunk with a bad cold.

I will have one more follow up session, three months from now. I am still trying to facial exercises and have turned up the humidifier in my bedroom at night to see if I can help the scratchy throat. 

At least I can still type my thoughts clearly. Maybe I'll work on the rest of those song lyrics? Ahhhhhhhhhhhh

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Wednesday, May 16, 2018

Your Local Drug Dealer

If you have Parkinson's disease, you should get to know your friendly drug dealer, also known as your pharmacist. They know more about Parkinson's medications, side effects, as well as food, drug and supplement interactions than even the best Movement Disorder Specialist. Why? Because that's their job.

A local pharmacist named Kirti spoke to our Parkinson's support group. He used words we could all understand and even had a sense of humor. Who knew pharmacists could be funny? They always look so serious behind those partitions. Or maybe they are just working hard. 

Even I learned a few things. (I know you can't believe it. I was surprised too.)

During the question and answer part of his presentation, a lady asked if medications could cause brain fog. He repeated her question so everyone could hear it, using the microphone, but he said brain fart instead. The lady blushed and quickly corrected him. Then he blushed and everyone started giggling like first-graders. (We always try to laugh at our meetings.) 

Another lady asked about calcium supplements for osteoporosis and PD med interactions. He said, do not take more than 600mg of calcium at one time because your body cannot absorb more than that. Also, be sure to spread the doses out during the day. Buying those 1200mg tablets is wasting your money. 

He also stated that many minerals found in supplements (calcium, magnesium, aluminum, iron) can bind to the carbi/levodopa (Sinemet) and may interfere with its absorption. So if that one particular dose of Parkie meds doesn't seem to work as well, did you take it with that multivitamin? It's best to use the two-hour rule: take minerals two-hours before or after taking your Parkie meds. 

Woman's multivitamin
Contains lots of minerals

I guess we better dig out our magnifying glasses and read the fine print on ALL the over-the-counter supplements we take.

A man complained of morning dizziness. He said he takes his Sinemet as soon as he wakes up and then feels lightheaded for an hour or so. The pharmacist explained that our heart rate and blood pressure drop while we sleep and the Sinemet may also cause a blood pressure drop, and that might be the cause of his dizziness. He suggested the man move around some and wait an hour or so before taking the Sinemet. If that doesn't work, tell your Parkie Doctor. 

Another lady complained about the high cost of one of her medicines. She said a one-month supply of rasagiline was over $600. The pharmacist whipped out his smartphone, used his app, and found her a price of $172 at Walmart. (One of his competitors.) has good prices as well. 

He also warned her to avoid foods with tyramine while taking rasagiline or selegiline. Foods like: cured, fermented, air dried meats and fish, aged cheeses, sauerkraut, kimchi, red wine and tap beer. There was an audible groan in the room, right after he said wine and beer. 

Someone else asked if there was a difference between Stalevo versus taking Sinemet and entacapone (Comtan.) He said the only difference is that with Stalevo, it's all in one pill and it costs more. (I'm really starting to like this guy.)

Another person asked about excess saliva and drooling. He said there is a drug that may help dry up the saliva, but that it may also cause constipation, which can already be a problem with Parkinson's. 

Someone asked how to get info if you use a mail-order pharmacy like or through the Veterans Administration? He said any pharmacist will gladly answer questions about any medications, including over the counter ones, even if you get them elsewhere. 

Then people began to ask about other non-Parkinson's related medications. Heck, while we had him captive, we might as well get all our questions answered. 

Finally, he was asked if he could recommend a local physician for Parkinson's treatment. His answer was "Just like all Parkinson's medications have side effects, so does living in Yuma. The weather is great, people are friendly, but limited access to specialists is the side effect."

Get to know your local drug dealer, they can answer your questions and who knows, they may even make you laugh.

Tuesday, May 8, 2018

Where the Heck is Yuma?

There are many people who LIVE in Arizona who don't have a clue where Yuma is, so don't feel bad if you don't know. Yuma (pronounced YOU-mah) is in the southwest corner of Arizona. Occasionally, someone will call it YUMM-ah, which I find humorous.  The Colorado river separates Yuma from California. The border with Mexico is just 7 miles from Yuma at the closest point, although you have to go into California to cross that border legally. On the map below, the towns of Bard, Winterhaven & Felicity are all in California. Los Algodones is in Mexico. There are towns called San Luis in both Arizona and Mexico. I live east of the Yuma City limits in the area called Fortuna Foothills.  

This next map will give you a better perspective of where I live in relation to the large cities: 
Phoenix is 185 miles away
Tucson is 240 miles away
Las Vegas is 300 miles away
San Diego is 175 miles away
Los Angeles is 275 miles away

The closest Movement Disorder Specialists are in those large cities, so travel to see one becomes more difficult as our disease progresses and when we most need their expertise. 

When I tell people that I live in the desert, most think Yuma looks like these giant sand dunes, but they are about 30 miles west of Yuma, in California. 

Parts of Star Wars were filmed in these giant sand dunes

In reality, most of the undisturbed areas around Yuma look like this.

Rocky terrain, lots of cacti & native shrubs & trees

Unless we get an exceptionally rainy Winter and then the desert looks like this. This was back in 2004-2005. 

Here are some fun facts about Yuma:

We are the warmest Winter city in the USA, our daytime highs in Dec, Jan & Feb are close to 70°

We are the sunniest city in the USA with an average of 4133 hours of sun yearly. Some hotels guarantee sunshine or you don't pay for the night! 

Our airport has the longest civilian runway in the USA at 13,300 ft. The runways are shared by the military, commercial aviation (American Airlines) and private planes.

We are the driest city with average rainfall 2.94 inches. The wiper blades on our cars disintegrate due to lack of use. And if it does rain, we have to hunt to figure out how to turn the wipers on.

Yuma is home to a Marine Corps Air Station, where F-35 Lightning II fighter jets train. It is also home to the US Army Yuma Proving Ground, one of the largest military installations in the world, where all types of weapons, munitions and unmanned aircraft are tested. Living here is like having an air-show every day! 

General Motors also has their desert test track here, so we often see the newest versions of the Corvette and Camaro driving around in their camouflage wraps. It's never a dull moment.

But probably the most surprising thing about Yuma is how much we grow. Yuma is the Winter lettuce capital of the World (iceberg, romaine, leaf, baby leaf, spring mix, spinach.) Yuma county is large, over 5500 square miles and is larger than the state of Connecticut. It has some of the most fertile soil in the world and a thriving agriculture industry due to irrigation canals fed from the Colorado river. 

All that green is agriculture

There are over 175 different crops grown in the Yuma area year round! The list includes alfalfa, Bermuda grass seed, cotton, Medjool dates, lemons, tangelos, tangerines, watermelons, cantaloupes, broccoli, cauliflower, celery, red & green cabbage and wheat.

Desert Durum wheat accounts for 95% of wheat grown in Yuma County, and about two-thirds of that is exported to Italy for use in making premium pastas. Another unique fact about Yuma County is that some growers also cultivate kosher wheat to be used by Orthodox Jews to bake matzo. 

Our farmers stay busy year round. A drive past the farmland is an ever changing patchwork quilt of varying shades of green.

Even though it's a long drive to see my Parkie Doc, I'm happy to call Yuma home and proud to be called YumaBev! 

Friday, February 16, 2018

Flying Foxes

My Wonderful Husband and I will be flying to Los Angels and then to New York City at the end of April to participate in some Parkinson's disease related events. There's just one small problem. We both hate flying. We are NOT afraid of flying. It's just that whenever one of us gets on a plane, something always goes wrong. I don't think we have EVER had a flight go perfectly. In fact, I will tell you some very humorous stories about our past flight adventures. Though, they didn't seem funny at the time. After writing these stories down, we decided to make THIS flying adventure a TeamFox fundraising event! 

It is about 5000 miles round trip from Yuma to New York City. That's 10,000 flight miles total for the two of us. I am asking you to sponsor a mile for $5.00. If we can get every mile sponsored, it will raise $50,000 for the Michael J Fox Foundation for Parkinson's disease research! 

Yuma to New York City

Please read about our past flight adventures, laugh at them and then donate!

1. Shortly after we got married 32 years ago, my Wonderful Husband earned a trip to Las Vegas, Nevada as a bonus from his job. It was a long weekend, fly in on Thursday and back home on Sunday. Our flight went well, until we got to baggage claim. Hubby's bag was there, but mine was not. Mine was on its way to Seattle, then Chicago and finally got back to Las Vegas on Sunday afternoon, just in time to fly back home to Orlando. I ended up wearing the same pair of jeans all weekend and borrowed a tee shirt from Hubby. 

2. A year or so later, my Wonderful Husband earned a weeklong trip to Paris, France. We would be traveling with a group of about 15 other couples, all flying in from different airports to our international departure airport in North Carolina. We got to the Orlando airport with plenty of time to spare before our 9 am departure time. When we checked in at the airline counter, we were informed that our plane was about to leave without us! The flight departure time had been changed and we were never notified. 

We were too late to check our luggage, and we would have to RUN to get to the gate, carrying all of our bags with us. We could hear them mispronouncing our names over the PA system as we sprinted down the meandering halls. Thankfully, I used to work at the airport, so I knew every shortcut. The plane was already backed away from the gate, but they opened the door, and we scrambled up the stairs. We were red-faced from running and embarrassed for holding up the flight. When we got to North Carolina, the group director apologized for not telling us about the time change.  
YumaBev in Paris

3. Wonderful Hubby and I decided to take a trip on our own. We would fly from Orlando to San Francisco, rent a car, drive down the coast to San Diego and fly back to Orlando. We had a hotel reserved near the airport and dinner reservations at The Brown Derby. We get to San Francisco and it's fogged in, so we land in Oakland. We had to take a bus to the San Francisco airport and finally arrived at 10 pm. We still had the hotel, but we had missed our dinner reservation. It was well after midnight before we got to eat. 

4. Two years later, Wonderful Hubby earned a trip to Hawaii. This time we would be flying out of Orlando with Hubby's boss and his wife. Let's call them Mr. & Mrs. Paul. We knew the Paul's very well and we socialized together often. We even drove to the airport with the Paul's

Also on this trip was another employee and her husband, we will call them Mrs. & Mr. Jones. We didn't know the Jones' at all, they lived in a different part of Florida. 

Our flights to Hawaii went okay, although the Island hopper plane from Honolulu to Kauai almost ran off the end of the runway. 

Four days into our weeklong trip, Mrs. Jones is sick and throwing up. It turns out that she is pregnant! Mrs. Paul plans an impromptu celebration. Yippee! And then everything goes wrong. Mr. Jones wants to know who the Father is, because he knows it isn't him.  

What we didn't know was that Mr.Paul had a thing going on with Mrs. Jones. Yes, you guessed it. Mr. Paul was the Father. Needless to say, the rest of the trip was rather tense, the flight back to Orlando with all of us sitting together was downright stressful and driving the Paul's back to their home after, well, thankfully, was very, very quiet. 

Wonderful Hubby retired shortly after this, and it was over a decade before either of us ever got on a plane again. 

5. The next time I flew was when we were working at a RV resort in western Colorado. It was just after the 2001 World Trade Center attacks and I wanted to go visit my Dad in Orlando. Most people were afraid to fly, and airfares were cheap. I'd have to catch a regional flight to Denver and from there, I'd fly non-stop to Orlando. When I got to Denver, I found my non-stop flight had been cancelled. I never knew exactly why, but my guess is that there weren't enough passengers to make the flight profitable. I still got to Orlando, by way of Salt Lake City, which is the opposite direction from Orlando. What should have been a four hour flight ended up taking over eight. 

6. It would be several more years before we dared to get on another plane. We had moved to Arizona and wanted to fly back to Orlando to visit family. We were not living in Yuma then, we lived about 30 miles away in a small town called Wellton. Friends offered to drive us to the airport and pick us up. Our flight left Yuma at 7 am and our return flight got in at 4 pm, so we accepted their offer and thanked them.

Come fly with me.....or maybe not!

Our flight to Orlando went perfectly. Our flights back went good too, until we got to Phoenix. As we sat at the gate waiting to board the 3 pm regional jet to Yuma, other passengers began to arrive. The plane was parked at the gate, but there were no employees to be found. Three o'clock came and went, still no one from the airline showed up. We checked the departures board and it said "delayed." We called our friends and told them not to drive to the Yuma airport until we called them back. 

Four o'clock came and went, then five and six. An employee showed up, made an announcement that there was a "technical" problem and disappeared. Meanwhile, the passengers waiting at the gate kept increasing, as the folks scheduled for the 6:30 pm flight arrived. 

Seven o'clock ticked past, as did eight and nine. The 10 pm flight passengers joined the rest of us waiting at the gate. We called our friends and told them we had no idea when or if the flight would leave. They said they'd wait to hear from us. 

At 11 pm the employee showed up, said there was still a "technical" problem but said our flight should leave at 1 am and disappeared again. IF the flight left at 1 am, it would be 2 am when we got to Yuma, way too late for our friends to come get us. So I called the Yuma airport to see if we could rent a car. Sorry, all the rental companies were already closed. I even asked the other passengers if any of them lived in Wellton, no was the answer. We had no choice, our friends would have to come get us.

Around midnight, several more "passengers" showed up. They were all similarly dressed. By the time the plane left at 1 am, it was completely full. The late arriving passengers were the flight crews for the next day's flights. This was the "technical" problem. We were aggravated, but it was comforting to know that there were several extra pilots, co-pilots and flight attendants on board. This was our first experience in learning how flight crews get to work...they fly!

PS It was 3 am before we finally got home, and yes, our friends are still our friends, although they never offered to drive anyone to the airport again. 

7. Flights from Yuma cost significantly more money, and with our previous experience, the next time we flew, we decided to skip the regional airport and drive directly to Phoenix, which is over three hours away. My still undiagnosed Parkinson's was quite debilitating by now, so we chose an easy to find, offsite valet parking with shuttle service. All went well until we got back. Our car was blocked in by another car and they couldn't find the keys. We had to wait for a tow truck to come move the other car.

8. The next time we flew out of Phoenix, we rented a car, one-way from Yuma to get there. We went to pick up our reserved small SUV (easier for me to get in/out of) only to find they had none available. We had to take what they had, which was a mid-size sedan. The passenger seat was so low, I couldn't see out the front windshield, I felt like I needed a booster seat. Wonderful Hubby had to pull me up out of the car at every rest stop. After this, we decided to give up flying, it was just too uncomfortable. 

9. Many years go by, I've been diagnosed with Parkinson's, started this blog, wrote the book and then I get invited to speak at a Parkinson's conference in New Orleans in April 2013. I am scheduled to have DBS brain surgery six months before the date, so I say yes. We decide to fly from Yuma again; the Yuma airport only has one gate, so it's easier. This time we fly from Yuma to Los Angeles and then to Houston and New Orleans. 

I am short and thin. Wonderful Hubby and I both book aisle seats, across from each other, so he can help me if needed. The airline seats seem to have shrunk since our last flight. My knees are up against the seat in front of me and I can't put my arms down by my side. The gentleman next to me is tall and he must sit with his knees wide apart. These airplanes are equipped with TV screens in the backs of the seat in front of you; probably to distract you from how cramped you are. 

All during our flights, they kept running a commercial on the little TV's for this airlines air cargo service. They kept showing expensive antiques, delicate flowers and exotic animals and stating how your items would travel in a safe and comfortable environment. I joked to the tall guy, that next time, maybe we should fly air cargo instead. I spend most of the flight standing up in the back of the plane near the flight attendants area. 

We decide that from now on, if we can't drive there, we won't go. 
But New York City is too far to drive and there's no place to park even if we did. So, I wonder what will happen on this upcoming trip?

My Wonderful Husband has challenged me to see who can raise $25,000 first! So, for all you Wonderful Spouses and Caregivers out there, here's the link to his TeamFox page:


And for all you Parkies reading this, here's the link to mine:


And for those who hate flying and want to join our Flying Foxes team, or just want to donate, here's the link to our team page:

Let the FUNdraising begin! Don't let the $50 or $100 buttons scare you, just press "OTHER" and choose your own amount! 

PS Our flights went well, we made all our connections and we had a fabulous time with the other Parkies. Thank you to all who donated to the cause. 

Tuesday, December 5, 2017

DBS Update: Five Years Later

Well, it has been FIVE years since I joined the DBS "Holes in My Head Club" for Parkinson's disease and the thing people want to know most am I REALLY doing?

I am still doing fairly well. There isn't much change from last year. My DBS settings are slightly higher; up .1 on my left side and .3 on the right. However, they are still much lower than the average DBS recipient.  
current DBS settings

My battery is reading 2.85V, so I still have a ways to go before it hits 2.60V, and will need to be replaced. 
Dr. Norton, my neurosurgeon, promises not to retire before then. Dr. Norton is 77, still working full time, and one of the best. 
Battery level

I now take one half of a carbi/levodopa pill on odd days and two halves on even days. I tried taking two halves every day, but it was too much.

Daily pills: Allergy, Sinemet, Thyroid 

I'm still a Happy Parkie and I try to find some humor every single day. I feel better when I laugh, so I laugh at cartoons, stories, neighbors telling jokes, funny TV shows, etc. But if you want all the details, please keep reading. 

Tremors: My intention (action) tremor is almost non-existent, except early in the morning before I take my first carbi/levodopa pill or if I am under duress. Resting tremor was never a problem for me. I still get bouts of internal tremor occasionally, but I am so used to them, I don't even notice. 

My rigidity is also well controlled, unless I stay seated too long, then it takes considerable effort to get to a standing position. Getting out of the passenger (right) side of the car is becoming more difficult, but the drivers side presents no problems. I also noticed that I have been hooking my foot off the side of the mattress to help me turn over in the past few months. Straightening up when first getting out of bed takes more effort than it used to, but then again, I'm another year older.     

My gait is becoming more shuffling. I also notice my right foot hits toe-first whereas the left rolls easily heel-toe. I can force the right foot to roll and take bigger steps, but I must concentrate totally just on that. As soon as I'm distracted, the shuffling returns.

If I grab a cart when I am shopping, pushing the cart seems to help with my gait. I don't know if it's the actual pushing, the way I'm holding my arms/hands or a mental thing, but it works. Look closely at my feet in this video.   

Adjustments of DBS settings help somewhat, but then cause other problems that are worse. Adding an extra dose of carbi/levodopa causes my right foot to kick out sideways and more dyskinesia, so I just live with it and am thankful I'm not worse.  

Bradykinesia (slowness of movement) varies during the day, but overall, my right side is considerably slower that my left. This is very noticeable during the finger touches, open/close hands and foot tap tests performed by my Neurologist. Not that I actually use any of those movements in real life! Does anyone?

My Wonderful Husband notices this mostly when I am trying to scratch an itch or use a knife to cut meat. It's as if my right hand refuses to move back and forth quickly. I have never noticed this, but I'm glad he does. 

That takes care of the Motor symptoms designed to be helped by the DBS. The Medtronic DBS is doing its job!

As far as the non-motor symptoms, I see some advancement of my Parkinson's disease:

I drool. It's embarrassing. I try to keep my mouth shut, but it re-opens and combined with a typical Parkinson's head down posture, saliva sneaks out. I tried chewing gum, but I have always swallowed the gum after a few chews, and I still do the same. I suck on mints, regular or sugar-free, and this helps. If possible, I sit with my hand under my chin, to keep my mouth closed. My Neurologist said we could try Botox, but I declined. I'll figure out a non-medical way to deal with it.

YumaBev with hand under chin

Constipation: If I eat my regular diet and drink plenty of water, I have no problems. If not, well, you know.

Speech: My voice is getting softer in volume. I use the speaker option when making phone calls and this helps me with the volume. My upper lip doesn't move correctly, and this causes some words to sound slurred. When I preview voicemail recordings I leave, no matter how hard I try to speak clearly and with inflection, I sound like a monotone drunk.   

I used to be excellent at reading out loud, and I enjoyed it, but now find I stumble on the words. 

When I speak, the words seem to have a difficult time getting from my brain to my mouth, even though they are both in my head. It's as if the words travel all the way down to my big toe first, then some take a detour to my other big toe, and then a few of the words stop and visit my pinkie finger. Well, you get the picture. 

Doing all the speaking at our monthly Parkinson's Support Group meeting, even with a microphone, is exhausting. 

I will be participating in a speech related clinical trial in early 2018, so I hope it helps.

Cognition: I can sit here and easily type out my thoughts. And by easily, I mean, the words flow easy; getting my fingers to type them requires using the backspace and delete keys often. 

If you ask me to subtract 7 from a starting number and continue, I can do it easily. (I wonder how the "new math" students would do with this?) But if you ask me to say as many words that begin with the letter "N" in 30 seconds, I probably won't name as many as I could last year. 

Multi-tasking: I used to be able to do many things at the same time. On a scale of 1 to 10, I was a 16. Now I have trouble answering a question while I am pouring milk on my cereal. It is frustrating. My neurologist dismisses this as age related, but I think it's a Parkie thing. My Wonderful Husband and most of my friends are all 20+ years older and none of them have this problem.

Driving: My built in GPS still works good though, and I am still the primary driver in our house. I know what exit to take, which lane to be in and where to turn when we travel to Tucson to see my Parkinson specialist. It's easier for me to just drive than for me to try to give the directions to my Wonderful Husband, especially with my speech delay. 

Sleep and fatigue: I sleep about 8 hours a night, but still seem to run out of energy every afternoon, so I take a nap. If I skip the nap, I find it difficult to stay awake while watching TV in the evening. 

Miscellaneous: I seem to have a constant stuffy nose and congestion in my throat, and my primary doctor recommended an OTC 24-hour allergy pill, which seems to help. 

The two smaller toes on my right foot randomly decide to curl under. I've tried to see if it's an on/off medication timing thing, but it never happens at the same time of day. It is not too painful, but it has caused the nails on those two toes to become thick and ugly. (This is my excuse for a pedicure!)  

All and all, year number FIVE with DBS has been very good and that keeps me a HAPPY PARKIE indeed!

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