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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. 

Tuesday, October 10, 2017

An Apple A Day...

My very first personal computer was a used Windows 95 laptop purchased in 1998. It served us well for many years while we travelled the country in our RV. It was small and didn't take up much space, but then it had a dreaded "blue screen of death" episode and crashed. I was lucky, I didn't have any files on it, we mainly used it for email and internet access. 

After that, I purchased a new 2004 Insignia Windows XP desktop at Best Buy. It was a black-Friday day-after Thanksgiving special. It came with a whopping 512mb of RAM and 112GB of storage and the whole set-up cost $700 (tower, flat-panel monitor and printer.)  A year or so later, I had the RAM increased to its maximum of 1GB.

'04 XP desktop

It takes the old pin-type keyboard and mouse and does NOT have wireless capabilities, no built-in mic and no webcam. In todays world of "I have to have the newest" it is a pre-historic dinosaur. And yet, it still works and I still use it. Why, you ask?

I like the Windows Movie Maker software that came with it. It's a very user friendly version, so I have refused every update. I also have Audacity sound recording software on it, which I used to record my song parodies. I added one of the earliest editions of Photoshop and use it to edit my photography. I have used all of these programs to create my YouTube videos. 

I added Office 2003 and used this to properly format the publishing files for my Parkinson's Humor book. I have greeting card software and a Kodak software which allows me to turn photos into cartoons or coloring book type pages. I combine these with PowerPoint to make my slides for my speaking engagements and also used these to create the book cover.

I even have a program that allows me to duplicate karaoke CD's, so I took my favorite ones and put them all on one disc, instead of taking my originals out with me where they might get damaged.

My old friend has served me well over the years, but it isn't good for online stuff. Even though I can create and upload a video to YouTube with it, I can't watch said video because it won't play without pausing. There just isn't enough working memory.

The same problem happens if I try to watch a webinar. Even doing simple things such as bill pay is difficult because every website has HD videos playing somewhere. When I joined in the chatrooms, no one could see me, I had to listen through headphones and reply by typing only. Skype won't work on it either. 

Positioning is tricky also, it must be connected to the internet via ethernet cable, so that meant the computer had to be physically close to the cable modem. 

I could have purchased a new tower, but then I'd have to learn all the new versions of the software and I didn't want to do that. And then what do you do with the old one? So, I just struggled along until my Parkie friend Kip called me one day. 

It seems Kip's wife Kitty had bought herself a new Apple iMac. Her old iMac worked just fine; he had an identical one to hers and was still using his. Kip wondered whether or not I'd like to have it. All I would need to do is come up to Las Vegas and pick it up. I said yes, even though I knew nothing about Apple products. He said it would be plenty fast enough for all my online needs.

Kitty, YumaBev, Kip

Since we were driving through that area anyway, we could just stop by Las Vegas and pick it up on our way home. Kip went ahead and cleared all her stuff off of it, and put it back in "out of the box" mode and then even installed all the updates. All I would need to do, when I got it home, was plug it in and connect to the wifi. 

We stopped by their place and Kip gave me a brief tutorial on his iMac, and then we loaded it in the car and headed back home. It was a little intimidating at first. I was used to Windows XP and this was different. But now that I have had it for awhile, I never use the old one online. It's still set up, and I still use the programs on it, but if I'm online, like I am right now, writing this blog story, I'm using my "new to me" iMac.

New to me iMac

An Apple a day...keeps YumaBev connected to the online world.

Thank you Kip & Kitty.

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

Sunday, August 20, 2017

The 10-Year Anniversary of My Parkinson's Diagnosis

To be honest, TEN years ago, I wasn't feeling very optimistic. I still had my sense of humor, but I was becoming very discouraged. I had been sending out "The Letter" to neurologists for weeks and weeks and had not received even one reply. Since I had been previously told, by multiple neurologists, that my problem was NOT Parkinson's disease, I was completely clueless as to WHAT was wrong with me. There were only three names left on my alphabetical list of neurologists within 500 miles of home. Two W's and a Z. I almost gave up, but I decided to go ahead and mail those last three letters.

My symptoms were getting worse every day. I needed more and more help with normal daily activities. Whatever I had was progressing at an alarming rate. I knew that within a matter of weeks, I would no longer be able to walk. 

My Essential Tremors were being managed fairly well by the propranolol, unless I was upset, then my whole body shook uncontrollably. It was the stiffness, lack of dexterity and coordination and the feeling of being completely tensed up that was getting worse. 

I could barely bend my leg to put pants on. Walking was becoming more and more difficult. My right leg felt like someone had put a 50-pound concrete cast on it from hip to toe. I didn't have enough dexterity to fasten the hooks on a bra. Buttons and zippers? Forget it, no way! I had to stand with my arms above my head, like a two-year old, and have Wonderful Husband take my shirts on and off. (He actually seemed to enjoy the taking off part!) It was almost impossible for me to get my right arm behind me to get my arm in a sleeve. I could no longer get up from a chair without help. My neck was frozen in a forward position, I couldn't turn it left or right. There was no pain, it just wouldn't move.

Anything that required any skills of my right hand were gone. I now did everything one-handed using my left. Wonderful Husband cut up my meals into bite size pieces. I could no longer even manage to put my hair into a pony tail. My right hand was balled into a fist and my right arm curled up against my abdomen. If I forced them straight, they curled back up as soon as I stopped concentrating.
I was so tense, every time the phone rang or a passing train blew its horn, I jumped. Sometimes, even my Wonderful Husband saying "Hey, Honey" startled me. If he came up behind me and touched me on the shoulder, I'd startle so badly, I'd almost fall over. The only thing that gave me any type of relief was sleep. It seemed like I felt best first thing in the morning or just after waking from a nap. 

Days went by and I had heard nothing from the last three letters. I didn't know where else to turn. Everything orthopedic had been ruled out, as had a brain tumor. 

Then on Tuesday, August 28th, 2007, the phone rang, and I jumped. Wonderful Hubby answered it and handed the phone to me. It was a woman's voice, saying they received my letter, and that the Doctor thought he could help me. Could I come in on Friday at 3 pm? I said yes, and handed the phone back to Wonderful Hubby so he could write down the doctors name and address. The doctor was in Yuma, only about 35 miles away. 

The next day, the phone rang again, and again I jumped. It was the same woman, saying they had a cancellation and could I come in tomorrow, Thursday, August 30th, 2007 at 11 am instead? I said yes. The Doctors name? Dr. Zonis, the last name on my list. I would later find out the woman who called was Dr. Z's wife. 

I wasn't holding out much hope, I had doctors tell me before that they knew what was wrong...and then they didn't know after all.

We went and Dr. Zonis gave me a quick neurological exam (finger touches, foot taps, touch finger to nose) and proclaimed Parkinson's. He wrote a prescription for generic Sinemet, told me to get it filled at Walmart and to come back the next week. I asked if he was sure. He said he was positive but that I would know within a week. He said he KNEW it was Parkinson's from just reading my letter. 

YumaBev and Dr. Z 

He asked about my work history and I told him I'd been unable to work for several years. He told me to go to Social Security TODAY and file for disability. His office person told me where it was located. 

We left his office, dropped the script off at Walmart and went straight to the Social Security office and filed for disability. We had some lunch, went back to Walmart, picked up the medicine ($35) and went back home. I took 2 pills that day (Thursday), and 3 the next. While watching TV on Friday evening, I noticed my neck wasn't stiff. I still remember saying, "My neck feels like jello, I can move it."

It's hard to believe that was 10 years ago! A lot has happened during those years. Dr. Z retired, changed his mind, re-opened his office and then retired again. The medicine helped me greatly, then it started not helping as well, so I had DBS surgery

I started this blog, wrote a book, took over running the local Parkinson's support group and I made it to the World Parkinson Congress last year in Portland, Oregon.

If you had asked me 10 years ago today, where will you be in 10 years? I'd have answered, "Dead or completely bedridden." But here it is, 10 years later and I am neither. 

As for the Essential Tremor, turns out I didn't have it after all. Apparently the neurologist who diagnosed me got that wrong, too. 

And it is all thanks to one Doctor, whose wife took the time to read a letter, show it to him and then decide to help me. I often wonder what happened to the other dozens of letters I sent out. Did anyone actually take time to read it? 

PS Dr. Z knew I didn't have insurance, so he wrote the prescription for double strength and had me cut the pills in half to save me money. Later on, he gave me samples and would get extra from the various pharmaceutical reps for me. He only charged me $30 a visit. Now that I am on Medicare, my co-pay to see a specialist is $40. I'm afraid there aren't many people out there in the medical field like him, which is sad. I hope he's enjoying his retirement, he deserves it. 

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Wednesday, May 31, 2017

Lights, Camera, Action

So, my phone rings and it's Adam, one of my favorite Arizona Medtronic representatives. He asks, "How would you like to be a movie star?" I answer, "Sure, as long as it's not an x-rated movie." We both laugh.

Adam says Medtronic is looking to do some patient stories about DBS and Parkinson's and wonders if I would be interested. "Heck, YES!!" I say.

Adam says filming will take place in Phoenix, Arizona, gives me the potential dates and says Anna, the Marketing Manager at Medtronic will contact me.

We hang up and I turn to my Wonderful Husband and say, "I'm going to be in a movie!" He says, "What have you done now?" Poor fellow, I'm always volunteering for some thing or another.

 Anna calls and gives me the details. It sounds very exciting. She sets up a conference call for a few days later with us and the film people. They ask a lot of questions about my DBS surgery, if I will be nervous in front of a camera (NO!), if my Wonderful Husband would be willing to be part of it (he says yes, reluctantly) and various logistical type things. I warn them about my weird sense of humor, but they have already checked out my blogs.

Anna and the film crew are coming from Minnesota; I hope the Phoenix temperatures don't melt them (predicted high on film day is 108°F.) A few days later, I get an email with directions on where to go, when to arrive and what to bring along (laptop, DBS controller, extra wardrobe changes.) 

The day comes and we drive to the resort hotel in Phoenix, got checked in and the first thing they do is feed us Mexican food for lunch (yummy.) And the first thing I do is spill beans on my jeans! Wardrobe change! It's a good thing I brought extra clothes.  

During lunch, we get introduced to the film crew.
From Blue Moon Productions of St. Paul, Minnesota:
Will, Director/Producer
Jeannie, Producer/Interviewer
Jeff, Audio Engineer
Eli, Director of Photography

and from the Phoenix area:
Dori, Stylest/Makeup
Jarrod, Gaffer/Grip 
Abel, Production Assistant

Then it was hair and makeup time: by the time Dori was done, I didn't look anything like the YumaBev you are used to seeing. Jill, another Arizona Medtronic rep was there and she asked my Wonderful Husband, "Doesn't she look beautiful all made-up?" His reply, "She always looks beautiful." (Good answer!) 
Dori applying makeup to YumaBev

YumaBev after makeup

Part One would be me talking about my life before Parkinson's, after diagnosis and medications, before DBS and my results after. I would be chatting with Jeannie and following her prompts. We went upstairs to a different suite and were set up to start filming when I heard a whirring noise. It was landscaping day at the resort, so the sound guy had to stop us every time he could hear the noise of leaf blowers or lawn mowers in his headset. Occasionally, it would happen mid-sentence and they'd ask me to start over. (I guess they don't realize I can't remember what I just said.) 

Jeannie, Jeff listening and YumaBev

I tried my best to speak clearly and to not touch my face or hair. Dori would come over to apply more lip gloss, adjust my blouse or tame a flyaway hair. When they were done, Will the director, took some still photos with a camera.

Jeff (in headphones), Dori (adjusting my hair) and YumaBev

I got out of the way while they moved items and reset for Part Two: Wonderful Husband's turn. He got makeup too. Afterwards he says, "If George Clooney wears makeup, so can I."

Jarrod getting lighting right for Wonderful Hubby

Part Two was similar to Part One, complete with the leaf blower interruptions. Jeannie would prompt Wonderful Hubby as he told his side of the story.

Jeff, Eli and Jeannie

From where I was sitting, I could see both him and what was actually being filmed on a monitor. I don't know how I did, but Wonderful Hubby looked great! It was very educational to watch all this. Now I know why it takes a year to make a two-hour movie!

Director Will watching Wonderful Husband on monitor

Part Three was me blogging, so they had to move items and reset the lighting. I went downstairs to change into a different blouse and get my laptop. Dori retouched my makeup. We had a problem though. I could not get my laptop to connect to the wifi and I must be online to blog. Anna said, "Use mine." Great! Except I couldn't remember my password. After a brief delay, I reset my password and went back upstairs. Anna's laptop was different than my old one, but I think we made it work. And yes, I was starting to compose this story!

Eli filming YumaBev blogging

Part Four was to be my Wonderful Husband and I preparing a meal while making small talk. I was supposed to chop veggies for a stir fry while Hubby helped. After some discussion, it was decided that Hubby would be in charge of the knife and I would help him (smart move, unless they wanted a blood filled horror film.) He diced the provided veggies quickly while I rinsed them and dropped them in a pan all while talking about karaoke songs. And we were done with the inside filming. All that was left was Part driving.

The film crew moved to the hotel entrance and I went to get my bright yellow car. I was to put my drivers window down, drive up to the reception area, exit the car and walk inside without looking towards the film crew. Keep in mind, it's 108° outside! 

I drove around the building, stopped, climbed out and...I didn't pull forward far enough. So, around the building I go and...this time I pulled forward too far. So, around the building I go and...another guest pulls in right in front of me. Around the building again and...I finally get it right! Yippee!

I wonder what the front desk staff and hotel guests thought of this bright yellow car going around and round? It reminded me of the car chase scene in The Pink Panther movie, all I needed was a gorilla suit!

We posed for some candid photos, gave and got lots of hugs and we were done. The film crew started packing up and we went and parked the car. Anna invited us to go out with them for dinner, but to be honest, I was exhausted. They had a small complimentary buffet in the lobby, so we walked over there to eat...guess what? Yes! Mexican food, again! 

YumaBev and Anna from Medtronic

After eating, we walked back to our room. It took several makeup remover wipes to get my face clean. We watched a movie and went to sleep early. It had been a very long day.

The next morning we see Jeannie at breakfast, pose for a selfie and as soon as the traffic cleared, we headed back home to Yuma. 

Jeannie and YumaBev

I don't know if they will use our story, if they do, I will let you know. If they don't, it was an enjoyable, educational experience and we both had a good time. 

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