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 is...how 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 2.59V, 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!

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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.


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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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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 Five...me 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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A Cure for Parkinson's Disease?

I get them weekly. They come via email or through social media but most arrive as comments on one of my blog stories. They usually send several with the exact same wording, because the sender doesn't understand why their "comment" isn't showing up at the end of the story. 

They don't know that I read every comment before approving it to be published. This is not to filter out any negative comments, but it is to filter out obscene (yes, I do get x-rated comments!) or predatory ones.

They usually start like this:

I was told by doctor that I had Parkinson many year ago with horrid shaking. I was given medicines that caused bad problem. Then I found Dr. X's herbal treatment and within days, I was completely cured. Dr. X tried to market his cure but was refused by the government. I will share secret with you. Go to website or call this number. 

These messages always have misspelled words and improper grammar and the cure always seems to happen within days of taking this 'treatment.'

IF you go to the website, you will see that this same treatment also helps every other ailment out there. Notice I said 'helps.' The website will be very careful about using the word cure. You have no idea what exactly is in this herbal treatment. If you spend the money (which is never inexpensive) to buy this stuff, you may be ingesting harmful ingredients. And if you do feel better, it's probably just a placebo effect that won't last.

Don't be an April Fool, beware of snake oil salesmen.

If there ever is a proven cure, trust me, the Michael J. Fox Foundation will know about it.

How to Track Your DBS Generator Battery Life Using the Programmer

The Medtronic DBS generator in my chest has a battery life span that varies depending on my individual settings. The higher the settings needed to control your Parkinson's symptoms, the shorter the life span. My battery is over four years old and still doing good. Others I know had to have theirs replaced after two years. Many don't realize you can check the battery life using your patient programmer.

It is a very simple process. All it takes is a few clicks and I will show you the steps below. I will use the word GENERATOR when I am talking about the surgically placed unit in my chest that delivers the therapy to my brain. 

This is my DBS programmer. It has a small white button on the bottom right side that turns the programmer on and off. There is also a larger white button at the top left that is used to turn the generator on or off. I will be using the ORANGE button with the check mark on it for this tutorial.

Place the programmer, or the attached antennae on top of your generator and press the orange button. When I do it, this is what my screen looks like.

Now, see the box outline around the center line where it says OK? The OK means that my generator battery is OK. But what if I want to know how much life is left? I use the arrow buttons on the bottom of the programmer and push the right arrow once. This is what my screen looks like after.

It says OK and 2.89 V. 

When my generator was brand new, my reading was 3.20 V. A year ago, it was 2.98 V. In January, it was 2.91 V. When it gets down to 2.61 V, I will get an ERI message warning me it's time to contact my doctor to schedule surgery to replace the generator.

Sometimes the outline is around the top line. 

This line tells me the generator is ON. If I use the arrows and move it to the right, it will display the programmer batteries. The AAA batteries in the patient programmer. 

It says Low and 25%. So I need to put new AAA batteries in my programmer. PS I use rechargeable ones.

You can use the up & down arrows at the bottom of the programmer to move the outline box on the screen. 

I check my generator battery once a month. That way, I can see how quickly it is discharging. In my case, I should be good for at least another year. 

An easy way to remember is....generator life is always displayed as V and programmer batteries as percentages.

PS This tutorial is for the Medtronic DBS non-rechargeable generator.