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Monday, June 17, 2019

I Could Have Waited...

I could have waited to schedule my DBS for Parkinson's IPG replacement surgery. My battery was still at 2.57V and it might be months before it dropped to 2.20V and stopped working. Then again, it might drop really fast. It's the unpredictability that bothered me. 

Back in January of 2019, when I realized it would need to be replaced soon, I would have been thrilled if "soon" was in June or July. Why? The days are longer. You see, Wonderful Hubby would have to drive me back to our hotel room after surgery, and he can't see to drive in the dark. If I could just hold out until mid-June, we'd be okay. 

I was getting tired of putting off any kind of travel or vacation plans and tired of checking my voltage level daily. So, I got ahold of Vanessa, Dr. Norton's assistant and asked if anything was available mid-June or later. She said how about Thursday, June 13th? I could have the Noon time slot and should be out of there by late afternoon. June 13th?? Well, at least it wasn't Friday the 13th. I said okay. 

It's now June 12th, we'd driven over from Yuma earlier (240 miles,) visited our friend Mr Brooks in the Tucson VA hospital, filled up the gas tank in our car, had a early dinner and now we were relaxing in our room at the Varsity Club Resort in Tucson. Believe it or not, we got a one-bedroom suite at a better rate than the other not-as-nice hotels near Tucson Medical Center. 

Wonderful Hubby relaxing.

We were watching the movie Grumpy Old Men on TV. I'd forgotten how humorous this movie was. I was laughing so hard, I almost wet my pants. 

We went to bed early, and had the alarm set for 8am, since I had to be at the hospital at 10am for replacement surgery at Noon. I was sleeping really well, cell phone started playing music very early in the morning. 

I have different ringtones for my various groups of contacts: Kodachrome for Camera Club, Friends in Low Places for neighbors, Little Red Corvette for Corvette Club, Lime In The Coconut for Medical and Shake, Shake, Shake Your Booty for Parkies.

My phone on the nightstand next to me was playing Shake, Shake, Shake. I groggily answered hello.

"Hi, this is Stephanie, have you left yet?"

What? I mumbled.

"This is Stephanie, from Tucson Medical Center, have you left Yuma yet?"

What?? Huh?

Slower and more clearly "This is Stephanie, from Tucson Medical Center, Dr Norton is sick, he's canceling all of todays surgeries. Have you already left Yuma to come to Tucson? He wanted me to catch you before you drove all the way over here. That's why I'm calling you so early. Have you left Yuma yet?"

Dr Norton sick!? Now, I'm wide awake. Hi Stephanie, we are already in Tucson, at the hotel just down the street from the hospital. We came yesterday. What's wrong with Dr Norton, is he okay?

"You are already here? Can I call you back in a few minutes?" 

Sure, no problem.

Phone rings five minutes later. "Hi Bev, I just talked to Dr Norton, since you are already here and it's just a battery change, he's going to go ahead and do your surgery. He cancelled the others. He came down with a bad cold yesterday evening. He said he'd double mask, so you won't get sick. Can you be at the hospital at 9am, he'll do you at 10am?"

Sure, I said, by the way Stephanie, what time is it?

"5:45 she said."

I was beginning to wonder if I made a mistake choosing the 13th? And I was worried about Dr Norton. But we got up and I got ready. I had planned on putting my hair in a single braid. I figured it would keep it out of the way, but my fingers wouldn't cooperate. I went downstairs to the front desk, hoping maybe there'd be a lady on duty, but there was a man. I checked the fitness room, just men. I went back to the room and asked Wonderful Hubby if he could braid my hair. 

He said he'd give it a try.
Who knew Hubby could braid hair?

The phone rings at 8am, it's a Tucson number. It's the hospital calling, they want me there as soon as possible, so Hubby eats a quick breakfast, and I drive us there. 

Maybe I should have waited......

Friday, May 31, 2019

Decisions, Decisions, Decisions: Rechargeable or Not?

When I had my DBS surgery for Parkinson's disease in October 2012, I had a choice of either a regular Activa PC generator (the thing in my chest that controls the leads in my brain) that would last from 3-5 years or I could choose the rechargeable Activa RC with a 9-year lifespan, but it would require me to charge it up on a daily/weekly basis. 
Rechargeable on left, regular on right

I knew lots of people who had the regular one and most were getting it replaced every 2-3 years. I only knew one person with the rechargeable and she said the charging equipment was bulky and didn't even come with a cute carrying case (She has a great sense of humor too.) 

Dr Norton, my neurosurgeon recommended the regular one. He said you will get the newest technology with each replacement. So, I took his advice.  

Well, it's May 2019 (6.5 years later) and I will soon be facing this decision again. If I were to have replacement surgery today, I'd be getting the same technology that was available back then. As of today, there's nothing new for the patient from Medtronic, except the 9-year rechargeable lifespan has been increased to 15-years. I am told, however, that a new charging system, a new patient programmer and even a new regular generator will be coming to market soon. How soon? Your guess is as good as mine.

Can I wait? Maybe. 

While I wait and check my current battery status (2.57v) on a daily basis, I keep weighing the pros and cons of my choices.

The advantage of a regular unit like mine is you just forget about it for about 3 years and then you get a new one. Mine is over 6.5 years old, so mine lasted way longer than the average. There's no guarantee the next one will last that long.

The disadvantage, for someone as thin as I am, is that it really sticks out. 

This is my DBS IPG 

I am not a very vain person and just the fact that it shows doesn't bother me. What bothers me is that one top corner. 

IPG is sticking out 
Do you see how the skin is really tight in that one area? I worry that it may break through my skin one day. 

Close up of that corner

I must be very careful when buying shirts, there can't be any seams in that spot. The same thing goes for bras, the straps can't rub across that area. I have to carry my purse on my left shoulder or across my body from left to right. I have to be careful when I am in the right passenger side of autos because the seat belt goes right across that spot. 

If I want to give someone a hug, I have to watch out for glasses or cell phones in shirt pockets, purses hanging on their shoulders, sometimes even bulky jewelry can cause me pain. I even have to be careful about the position I sleep in. Sometimes I feel some discomfort in that spot when I am stretching my arms. I have to always be aware of it. 

I have held both choices in my hands, I have taken comparison photos. The rechargeable is definitely smaller and more importantly for me, thinner.

It's definitely thinner

And of course, now I know more people who now have the rechargeable unit. Some charge it daily, some twice a week, some less than that. Most agree the charging apparatus is bulky, especially if you travel often by air, which I don't. Most charge theirs when they are laid back in a recliner watching TV. It apparently just sits on top of the unit in their chest. This could be a potential problem for me because I prefer to sit up straight. I can't sit in a recliner, I find them very uncomfortable. 

The other advantage of the rechargeable is the now 15-year lifespan. This means less replacement surgeries and any time a Parkie can avoid surgery, it's always a good thing.

To further complicate things, I could also replace my Medtronic device with one from Boston Scientific or Abbott, but I have ruled this choice out. I have a good relationship with Medtronic and am happy with the way my device works. Switching might cause problems. 

I still have some time to decide, but I am leaning towards the thinner rechargeable. Maybe one of the new devices will be ready soon. 

Help me decide, what do you think?

Wednesday, May 1, 2019

Parkinson's Awareness is Targeting the Wrong People

Today is May 1st and Parkinson's Awareness month is over. Many people around the world have taken time out of their lives to visit their city mayors, county supervisors, state and national government representatives to have April proclaimed officially as Parkinson's Awareness month. 

A few years ago, I was one of those eager people. Then I realized it was a waste of my time. Having politicians create a document does nothing to help those of us who actually have Parkinson's.

Does this help anyone with Parkinsons??

The same applies to writing Letters to the Editor. Who does it actually help?? Oh, if you mention that there is a local Parkinson's support group in your town, one or two people might find out something they didn't know. But if they really wanted to find a support group, all they had to do is Google "Parkinson's support group" and the name of their city. That's how I found my group. If your town doesn't have a group, you can start one yourself or join an online support group. The friendly folks at the Parkinson & Movement Disorder Alliance can help you. 

If you want to really know how to help people with Parkinson's, educate the health care people we have to deal with. Give scholarships to medical school students to choose neurology as a specialty. Then convince the top neurology residents to become Movement Disorder Specialists. Then give these specialists incentives to set up their practice in smaller towns and rural areas.

My blog is called Parkinson's Humor, but there is nothing funny about having to drive 200 miles and deal with big city traffic to see a Doctor who knows about Parkinson's. 

And it's not just the lack of quality neurologists that is a problem. Most primary care providers and non-neurological specialists know zilch about Parkinson's. It is up to you to educate them.   

So instead of visiting politicians and writing letters to the newspaper, I decided to try to get telemedicine for Parkinson's in Yuma, so we don't have to drive 200+ miles.

It took me six years, but I finally managed to get telemedicine in Yuma with a Movement Disorder Specialist based out of Phoenix. I reached out to several MDS' until I finally found one who was willing to give it a try: Maria Ospina MD. Then I did the local leg work, I went and found a local doctor who would allow use of his staff and office space. Now, several local Parkies see her via a computer screen right here in Yuma.    

And that to me is the best Parkinson's Awareness campaign there is. 

Now it's YOUR turn. 

Wednesday, January 23, 2019

YumaBev is a VIDEO star??

After almost two years of editing, the Lights, Camera, Action video my Wonderful Husband and I did about Medtronic DBS therapy for Parkinson's disease is finally available to be viewed. 

Click to play:

I had watched some of the other Patient Stories online and was expecting mine to be 1 or 2 minutes long. I wondered which parts of the hours and hours of filming they would use. A lot of what they filmed that day was a blur.

I remember talking about my DBS experience and how they kept having to stop because the landscapers were making too much noise outside. 

I remember laughing and being silly and talking about my Parkinson's Humor blog.

I remember circling around and around the hotel trying to get a good shot of me driving my bright yellow Chevy Sonic. 

But most of all, I remember being able to share my story in my own words, just like I do in my blogs.

I was expecting a 90-second video, instead they made an eight minute movie that tells the love story of me and my Wonderful Husband. Enjoy it. 

You can also find the video by searching Beverly's DBS Story on YouTube.

I'd love to hear your thoughts about it. Email me at

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Monday, January 21, 2019

The Energeezer Parkie Will Need a New Battery...Soon

Several years ago, I wrote a story where I used rechargeable batteries as a way to describe what life is like with Parkinson's disease. Using my warped sense of humor, I changed the famous Energizer Bunny to the Energeezer Parkie. It thought it was a pretty good analogy. Once I had DBS surgery, my 'Parkie' battery was pretty close to 100% every day. 

I knew my Medtronic Activa-PC DBS generator battery would need to be replaced some day. The average lifespan is 3 to 5 years. Mine was six years old in October 2018. 

At the beginning of 2016, my battery level was 2.97v. At the beginning of 2017, my battery level was at 2.91v. At the beginning of 2018 it was 2.85v. It was averaging a drop of .06v a year, so I figured I'd have several more years until it reached the ERI (Elective Replacement Indicated) warning you get when it drops to 2.61v, I was wrong.

I had been in the habit of checking my battery level using my patient programmer about every three months. April was 2.83v and July was 2.81v, right on target. So you can imagine my surprise when I checked it at the end of October 2018 and saw that it was down to 2.76v.  

I started checking it monthly, then weekly and now daily and I wasn't liking what I was seeing. The amount of time between voltage drops was decreasing. 

As of today, January 21, 2019, it's now at 2.69v. That's a drop of .07v in less than three months. If the voltage drop continues to accelerate, I will get the ERI warning in a few months!!!

Jan 2019, battery at 2.69v

My neurosurgeon, Dr. Norton is in the same office as Dr. Bradley, my Movement Disorder Specialist and I have an appointment with her in mid-March. I have already contacted Norton's assistant because I didn't want to wait until March and then find out that he's going to be on vacation or something else that would make him unavailable. Norton's assistant said they could get me on his surgery schedule within two weeks, but I should call if I get the ERI warning before my March appointment. 

Looks like the Energeezer Parkie will soon be getting  a brand new generator. 

The generator won't stop working when the ERI warning appears. There's a built in cushion of time, it doesn't stop working until it gets to 2.20v.

If you have a Medtronic Activa DBS generator and don't know how to check it, click on the link above. You don't want it to suddenly stop working.

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Tuesday, October 30, 2018

DBS Update: Six Years Later

It has now been SIX years since I joined the DBS "Holes in My Head Club" for Parkinson's disease and I bet you are curious as to how am I doing?

There isn't much change from last year. My DBS device settings are exactly the same as they were last year (1.30 left, 1.90 right) and my generator battery level is 2.76V which is lower than I expected, but still a long way from the 2.59V replacement (ERI) warning. 

I have reduced my intake of carbi/levodopa to one half of a 25/100 pill per day. Yes! You read that correctly, I have LOWERED the amount of Parkie meds I take daily. 

My sense of humor is still there and I try to find things to laugh about every day. My slowness of movement and rigidity are well controlled. I have almost no visible tremor, except first thing in the morning. 

Settings: 1.30 left side, 1.90 right side

I am happy that I have had such amazing results from my DBS experience and am thankful to Medtronic for making this therapy a reality. 

If you want more details, read last year's update: DBS Year Five.

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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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Tuesday, July 17, 2018

Driving Mr. Brooks

It's no secret that I like to drive. Even though I have had Parkinson's disease symptoms for well over 20 years, thanks to Medtronic DBS, I am still a good driver.

Mr. Brooks is a friend of ours. We met him when he joined the Corvette Club several years ago. He's been single all of his 85 years and he was an only child, so he has no family. He also has a great sense of humor. When asked if he has any children, he winks and says, none that I know of. 

Mr. Brooks with arm in sling at Corvette Club dinner

Mr. Brooks was a rescue crewman in the Navy, which meant he spent most of his Naval career flying high in the air in a helicopter. Just prior to his retirement, the helicopter he was in, crashed. Over the years, he's had replacement parts put in his ankles, knees and shoulders, all damaged in the crash. After a 30-year military career, he went to work as a policeman at the US Army Proving Ground here in Yuma until he totally retired about 20 years ago. 

In the years that we have known Mr. Brooks, he's had to have all of his replacement joints replaced again. Usually, Mr. Brooks would drive himself to the Veterans Administration (VA) Hospital in Tucson, Arizona (250 miles away) and they would replace the part, then keep him there until he was well enough to drive himself back home. It seems like he's had something in a brace, cast or sling the entire time we have known him. Sometimes we would pick him up in my car and take him to the Corvette Club functions, so he was used to my driving. 

YumaBev's Sonic

In the Fall of 2016, Mr. Brooks was having a problem with his left ankle and it wasn't something the VA could fix. It would have to be outsourced, and he would need a driver. He asked me if I would be willing to drive him to a hospital in Tucson and drive him back home the next day. He would gladly pay for my hotel room. My Wonderful Husband and I said yes, as long as his surgery date didn't interfere with my own Tucson appointments. 

As it turned out, his surgery was scheduled for the same day as my appointment with Dr. Bradley. He needed to be at his hospital by 5 AM on Monday and my appointment wasn't until 1 PM. I was also scheduled to speak to the University of Arizona Medical School students early Tuesday morning and he wouldn't be released before noon, so all would work out just fine.

There was a small problem though. It was Thanksgiving weekend and there were no reasonably priced hotels to be found in Tucson and we'd need two rooms on Sunday night and one for Monday night. I contacted my Parkie friends Ken and Lisa and asked if all three of us could please stay at their Tucson home. I knew they were out of town for the holiday and Wonderful Hubby and I had stayed at their house in the past.

Luckily, they said yes. So, we packed our bags and I drove my car into Yuma to pick up Mr. Brooks, and we headed for Tucson. We got the keys to our friends house from their neighbor and then drove the route to hospital. I didn't want to be trying to find my way in the early morning darkness. We ate what Mr. Brooks jokingly referred to as his last supper, watched some football on TV and retired to our rooms early. 

I set the alarm for 4 AM and woke to heavy rain and very cold temperatures. Fortunately, we had parked in the garage. My Wonderful Husband hates hospitals, so I left him sleeping. Mr. Brooks was ready early, so I drove slowly to the hospital. I was glad we did a trial run in the daylight the day before. Everything looked different in the darkness and rain. I stayed with Mr. Brooks until they hauled him away on a gurney, made sure the staff had my cell phone number and that I had permission to check on him. Then I drove back to the house and went back to sleep.

After my appointment with my Parkinson's specialist and a quick chat with my DBS neurosurgeon Dr. Norton (they work at the same place), Wonderful Hubby and I went to see Mr. Brooks at his hospital. We walked into his room to find him crawling across the floor from the bathroom. He wasn't able to reach the nurse call button, the urinal or his crutches and he said he had to go. I scolded him and we called a nurse to help get him back in bed. And then I scolded the nursing staff as well. We stayed until they brought him dinner and then headed back to the house, stopping for something to eat on the way.

Tuesday morning, we returned the house keys to the neighbor. I went to speak to the Medical School students, then we drove to the hospital, picked up Mr. Brooks and headed back to Yuma. We made sure he was settled in at his house and came home.

This was the first of many trips to Tucson or Phoenix that I would make with Mr. Brooks. After that first trip, Mr. Brooks would drive one of his cars (he has several) to my house and then hand me the keys and I'd drive the rest of the way. Mr. Brooks always tells the staff at the Doctors office or Hospital that I'm his driver. "Doesn't everyone have a pretty blonde chauffeur?" Mr. Brooks says. When they ask me who I REALLY am, I say I'm his chauffeur. 

This is one of Mr. Brooks cars 

As we are cruising along, Mr. Brooks tells stories about his Naval career. He was part of the ocean pick-up crew for one of the Apollo space missions. He did mountain rescues in the Alps and while there, he travelled all over Europe in an Austin-Healey. He's lived an adventurous life and is still enjoying every day.

Mr. Brooks newest car, and YES, I have driven it too!

I know he must be in pain every day and yet he never complains. We just got back from an overnight stay for another early morning surgery on his left ankle. They had to take a screw out because it was bulging through the side of his calf. This was the third time Mr. Brooks had a 'Screw loose!' as he likes to tell people. I hope this is the last of his replace the replacements surgery and that he's finally done.   

It takes a lot of planning to make these trips. I make sure I know exactly where I am going and memorize alternate routes, just in case. I'm glad I can still drive Mr. Brooks. 

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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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