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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YumaBev and Her Shoe Shopping Adventure

A few months ago, I diagnosed myself with plantar fasciitis. My feet were improving somewhat, but I went to see my Doctor just to be sure. She confirmed my diagnosis and added prescription strength naproxen to my daily drug regimen. Then she looked at the brand new shoes I was wearing and said, "You NEED to wear better quality shoes, or your feet will never heal."

Sounds simple, right? Wrong.

I have worn the same type sneakers for DECADES: Velcro, wide-width, plain white, boring and cheap. My feet are short, but they are also wide, so my current shoe size is 6.5 W.

Kmart sneakers

The name changed, but the shoe didn't

I used to buy Kmart brand. It was simple; walk in, grab my size, try them on just to be sure they felt okay, pay for them and I was done. Over the years the size grew a little larger and the "brand name" changed, but they were the exact same shoes. During our traveling years, I would buy them whenever we were near a Kmart. If they were on sale, I'd buy two. A few years ago, the closest Kmart to Yuma, which was 80 miles away, closed, and I was stuck. I could no longer easily get my beloved sneakers.

So, I started buying the Walmart brand, interestingly named "Betty" which was my Mother's name. They fit okay, not the same, but okay. They didn't last as long, but were half the price of the Kmart brand, so it was a good deal. Or so I thought. I was wearing these brand new shoes when my Doctor scolded me.  

Betty sneakers

I left the Doctors office in a quandary. I haven't shopped for shoes for decades. I didn't know how or where to begin. 

First I went to a store with the word Famous in their name. It was a Monday morning and the store was almost empty. There were shoes everywhere and to be honest, it was a bit overwhelming. I started at the far end and looked for shoes in my size range. The few boxes I found with size 6.5 on them were way up high, beyond my reach. I asked the only employee, who was busy gossiping with the mall security guard, if she could help me. She looked down at my shoes and said, "I hope you don't need Velcro, because we don't carry those." I assured her that I could tie laces, but needed wider width shoes. She went and got two boxes down from the shelves and went back to gossiping. I tried them on and both were way too tight. Since all the smaller sizes were way up high and I got no additional help, I left.

From the Famous store, I walked next door to Kohl's, but ran into a similar problem finding my size. I did try on one pair of Skechers at Kohl's, but they were too big. They didn't have any smaller sizes so, I gave up and went home.

The next day, I went shopping again. This time, I headed to the Skechers Outlet store. As I walked in the door, I felt overwhelmed once again. Too many choices can cause anxiety for some people with Parkinson's and apparently I am one of them. 

The Manager of the store came right over and asked if I needed help. I told her what I was looking for and my size. She said, let's go sit down and measure your feet to make sure. She then went and brought two pairs of shoes to try on. After I tried them on, I told her what was "wrong" with each pair. She then went and brought two more. Within 20 minutes, I had shoes that fit my feet perfectly! 

I really liked the brightly colored ones, but the only ones that fit my feet were rather plain. I had my choice of gray or white. Since gray is the color of the Parkinson's Awareness ribbon, I bought the gray pair. 

My Parkinson gray Skechers

The Manager said I could get a second pair half off within 45 days. After wearing the gray pair for a few weeks, I decided they fit better when I wore thin socks, so I went back and bought the second pair, a size larger, to wear with my thicker socks. The price was reduced, so by waiting a few weeks, I actually saved money! 

The shoes were not cheap. The gray pair cost about six times more than the Walmart Betty's, which would start to come apart after 2 months. I've been wearing the Skechers all day, everyday and 6 weeks later, they still are like brand new. 

2nd Pair of White Skechers

Now all I need is some colorful laces to brighten them up. Maybe pink for Breast Cancer Awareness? 

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You've Gotta Learn to Walk This Way

Exercise is a necessity if you have Parkinson's disease and walking is a great way to keep moving. One of the realities of living with Parkinson's disease is that your gait will change. These changes happen so slowly, you may not even notice that your arm no longer swings or that you walk like you have a ten pound weight attached to one ankle. 

Medications can reduce the rigidity, but if you've been walking this way for a long time, it can be difficult for your brain to learn a more normal gait. 

Prior to diagnosis, I had a very distinctive gait. I lurched. Neighbors could tell it was me from four blocks away.  

My right leg was very rigid, my right hand was always clenched into a fist, my right arm didn't swing and my right foot seemed to thud down as I walked. People, including medical folks, thought for sure I had a stroke. 

After diagnosis and medications, my gait slowly changed, and I lurched only when my meds wore off. One of these times, made for a humorous story involving a dance contest. 

As the disease progressed and I began to take more and more medications, my gait changed again. My movements became slower and my left foot would cramp. Gait changes can cause pain in your knees, hips, feet, back, neck and even shoulders due to postural misalignment and in my case, I had left hip pain that woke me every morning along with occasional charlie horses. Not fun.

Fortunately, the last foot cramp I had was the morning of my DBS surgery and as the settings got optimized and I reduced the amount of medications I was taking, my gait slowly changed again. The charlie horses disappeared but I now added left knee pain in the mornings. I would get out of bed and within ten minutes, I'd be out walking. It seemed the only way to relieve the hip and knee pain.

Sometime in the last year or so, I realized that my left knee and hip had stopped hurting and therefore, I was sleeping longer. Yippee! Hooray! 

However, I began to notice something new a few months back. When I would first get out of bed, the bottom of both feet would hurt for the first three or four steps I'd take. Since walking seemed to relieve the pain, I began walking even longer distances. But each morning, the pain was worse and then, throughout the day, if I sat for more than 15 minutes, the first few steps I took were very painful.

I considered going to a foot doctor, but decided to ask others with Parkinson's first. They came up with a possible answer: Plantar Fasciitis. It seems my gait had changed again and my feet were slapping the ground as I walked instead of rolling normally from heel to toe. The more I walked, the more I aggravated my feet. 

I had my DBS settings adjusted, bought brand new walking shoes, reduced the amount of time I walked and paid close attention to exactly how I took each step. If I get distracted, I begin slapping my feet again, especially my right foot. It's been a few months now, and my feet are slowly getting better, but I am still walking.

Here I am, at age 55, trying to learn how to Walk This Way.


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Parkinson's Disease; Fall in Winter

A few weeks ago, my Wonderful Husband and I were sitting on our back patio when we spotted something large and orange in the desert behind our house. We sat there trying to figure out what it was. We came up with some humorous possibilities, such as a discarded prison jumpsuit, or an inflatable Halloween pumpkin or perhaps a child's swimming pool. Whatever it was, we decided to go get it and put it in the trash. 

I was extra careful climbing over our low back wall and my Wonderful Husband held my hand as we negotiated a steep ditch created by runoff water. All that was left was a very shallow secondary ditch. The next thing I know, I was lying in the sand and my glasses were a few feet away. 

The steep ditch

The shallow ditch 

I was okay; I just had some scrapes on my leg and the palm of my hand, but my glasses weren't damaged. I was achy for a few days, but at least I fell in soft sand and not into rocks or on gravel. But why did I fall?

I've been replaying the fall over and over in my head; there was nothing for me to trip over and I was watching what I was doing, so how did I end up in the sand? The answer I have come up with is ... brake failure. 

Yes, brake failure.

It seems that if I get some forward momentum, I can't stop! Since the fall, I've noticed that if I step off a curb, due to the forward momentum, it takes a few extra steps before my gait returns to normal. The same thing happens if I walk down an incline. I have trouble stopping. No brakes! 

So, that's what happened when I tried to navigate the shallow ditch; my brakes didn't work and I fell forward into the sand. Now that I realize my brakes don't work, I adjust how I handle steep driveways, curbs and ditches. 

The large orange thing out in the desert? Yes, we went ahead and got it. It was a section of temporary construction fencing that probably got swept away in a rainstorm. We untangled it and put it in our trash. Just because I took a tumble, didn't mean we shouldn't pick it up, right?

May Flowers

There's an old saying: 
April showers bring May flowers. 

We seldom get ANY rain in Yuma, Arizona, and this year we got none in April but we still have the May flowers.

I, however, grew none of them. While my Mom had a green thumb, mine is brown. I can even kill fake plants. Many of my neighbors do have green thumbs and since most of them have already left to go back North for the summer, I get to enjoy the fruit of their labor on my morning walks. It's a shame they do all the work and never get to see the blossoms.

All of these beautiful cacti have bloomed in the last few days. The flowers open very early in the morning and by mid-afternoon, they are already dying. The flowers are huge, but only last one day. Some will bloom again in the next month or so, others won't bloom again until next year. If I didn't walk every morning, I would miss seeing them. 

This is the Sleeping Cactus from a couple years back. It sure has grown and to think the nursery was going to throw it in the trash.

This is the cactus that my photo won a Facebook Contest and was featured in the University of Arizona's Co-op Extension brochure a few years ago.

I have to be very careful when I take these photos, because one false step and I'd end up with prickly needles stuck in me. OUCH!

Today, on my walk, I noticed a different kind of tree, one that perhaps, even I could grow myself. It's a bottle tree...

Have a Happy Parkie Day!  

PS:
As luck would have it, the neighbor with the bottle tree left a few days ago. As he was leaving, I jokingly said, "I'll keep an eye on your bottle tree while you are gone." We both laughed and he headed north for the summer.

Well, guess what? I walked past his place today on my morning walk and this is what I saw:

Yup, all the bottles were gone off his tree! 

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Walk Quietly and Carry a Big Stick

My Parkie friend Rick lives in northern Maine and makes walking sticks in his spare time. Last Spring, I traded him a copy of my Parkinson's Humor book for a walking stick. I didn't get to use it over the Summer. Since my DBS surgery, I sleep later and I have missed many sunrises. By the time I would get up, it was just too darn hot to walk.

However, now that the weather is cooler, I started walking again. Usually, I walk late in the afternoon, about 4:30 pm. My neighbor, Freida, walks with me. 

Sometimes I walk by myself, in the morning, and the one day I forgot to take the walking stick with me, I needed it. Not for walking, but to fight off a fierce dog that decided to chase me; barking and trying to bite me. So, I turned around and in my gruffest voice possible, I barked right back at it and then stomped my foot and finally, it decided to run off back home. Needless to say, I don't walk past that house anymore, but from now on, I always remember to carry my big stick.


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Parkinson's Disease: Marching to a Different Beat

In the summer before I started Junior High school, I decided to play clarinet. Why? Because of Barbie. Barbie was my best friend and lived next door. She was a year older and had everything this twelve year old did not. She was pretty, with thick wavy hair and straight teeth. And while I was still wearing clothing sized for first graders, she wore teen size clothes and needed a bra . Barbie played clarinet, so I wanted to play one, too.

Barbie

The school held a band camp. The first thing they taught us was how to march, not how to play anything, just how to march. We had to take two steps for each yard line on a football field. I marked lines on my driveway with chalk and practiced until I could step off exactly eighteen inches, even with my eyes closed. I never was a good clarinet player, but I was an excellent marcher. For years, I could accurately step off how many yards something was, until Parkinson's Disease affected the way I walked and stole my built in yardstick.

In my ongoing effort to learn how to undo what Parkinson's has done to me, I attended a Music Therapy program at the Parkinson's Conference in Irvine, CA, a couple weeks ago. The speaker stated that music could be used to improve your gait and help your brain re-learn how to walk normally. I was already doing Treadmill exercises recommended by another speaker at the same Conference, so I decided to add some music. I picked out some favorite tunes, including some I used to play in my school band days (Louie Louie and Tequila) and concentrated on walking to the beat. I noticed a big difference right away. My gait evened out and my arms began to swing like normal, plus it was fun thinking about those teenage years. 

I actually enjoy Marching on my treadmill and the improvement in walking seems to be lasting all day. Maybe I'll get my built in ruler back. (Honey, where's the chalk?) 

Bev playing clarinet

Hmm, I wonder what ever happened to that old clarinet?

This is video of me walking on treadmill, and then adding music. Click on > below. 

So, my Parkies friends, put on some Marching music and get walking to a different beat.

You can find all my videos on my YouTube channel:

https://www.youtube.com/user/ParkinsonsHumor

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Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon or your favorite online book seller. Thank you and have a Happy Parkie Day!

Senior citizens .......... I love them!

Parkinson's Disease has a sense of humor and likes to sneak up on you if you aren't paying attention.  Sure, I noticed the tremors, but the rigidity or slowness, not so much. The first time I noticed how slowly I moved was on a cruise ship filled with seniors and I was completely shocked. My Wonderful Husband was taking the stairs two at a time and then I noticed that almost everyone was walking faster than me, even the folks with walkers and canes! 

Click to enlarge

The real kicker came when I went to visit my Aunt who lived by herself in an upstairs apartment. I hadn't seen her in years and yet, when my Wonderful Husband and I got to the door, she asked me if I could make it up the stairs. Somehow she knew that those 13 stairs would give me trouble. So there I was, 46-years old and being helped up the steps by a tiny and almost blind 94-year old  woman. We joked about it every phone call after that. She lived to be 97 and could still take those stairs better than I could.

I look healthy, and except for the Parkinson's, I am healthy and I can sometimes fool younger folks but I can't fool the older ones. If there is one thing I've learned in life, it is never under-estimate senior citizens. They watch over me and know instantly whether I am doing good or bad.

I used to live in a RV Park filled with seniors, and if they noticed that I was having trouble, they would come rescue me in a golf cart. Of course, they would never say they were rescuing me, they would come up with a good excuse to give me a ride home.  

The ladies were more creative:  "Hey I need your advice, can I give you a ride while we talk" or "Can you show me where Ann lives, she's near you, right?"  

But the men were more fun. They would say things like: "My wife isn't looking, can I give a ride to the prettiest girl in the park" or "Let's stir up some gossip, will you ride with me". These were extremely funny to me, since I knew their wives had sent them to get me, but I played along. I no longer live there and I miss all my friends and the golf cart rides.

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Now I live in a new housing community and I walk every morning with George, a neighbor of mine who is 78-years young.  Some days we walk for 45 minutes, some days we only do 10, it all depends on how we feel.  We watch the sunrise, check out the new construction and see how people have decorated their homes and yards. Sometimes, we even get to see a cactus blooming. But the best part of all is sharing stories and laughing!  What a great way to start the day!  

Beautiful metal wall decoration

 

Arizona Loch Ness Monster

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parky Day!