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

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

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 GoodRx.com app, and found her a price of $172 at Walmart. (One of his competitors.) RxOutreach.org 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 RxOutreach.org 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.

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!