Why DBS?

I am a week away from DBS surgery. I have had a lot of people contact me and ask why, specifically, I am considering such a step now. To most, it seems like an extreme measure; a last resort, but it actually is a quality of life decision.

Even though I was only diagnosed with Parkinson's five years ago, I have had the disease for at least sixteen years. I had excellent results from medication when I first started taking it. The change in my physical condition after just five pills was miraculous and I wish I had before and after video to show you. 

I got by on just three doses a day for almost four years, but then the disease progressed again. With Parkinson's; you develop symptoms then stay at that level for awhile; develop more symptoms and stay at that level for awhile; develop worse symptoms and stay at that level for awhile, etc. I am now in my sixth "get worse" period and my "stay at the same level" times are decreasing. A year ago, I was doing well on three doses; a few months ago, I was doing okay on six doses. Now, I am not doing well at all. (Every person with Parkinson's progresses differently.)

If a picture is worth a thousand words, then this video should explain why I am having DBS. This video is eight minutes long and shows a typical day for me. I repeat the same routine (typical things done daily) over and over again, every hour or so. Rigidity and slowness (bradykinesia) are difficult to capture, but I think I've done a pretty good job. Have a look:

If the surgery goes well, I expect to have an increase of six hours of ON time a day and hopefully eliminate some side effects (foot cramps) at the same time, which would definitely improve my quality of life. 

You can find all my videos on my YouTube channel:

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

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A Moonwalking Parkie

I remember watching, in the summer of 1969, the first moonwalk. We had a small black and white TV and the picture was grainy. You could just barely make out a bulky figure climbing down from the spacecraft and stepping on the moon. It was thrilling for this little nine-year old girl. I lived in Orlando, Florida back then and used to watch, from my front yard, the rockets blast off into space.

Fast forward to 1983 and I watched Michael Jackson moonwalk on the Motown 25 Special, this time on a color TV. Within a few weeks, I managed to do the tricky dance-step myself, but only if the flooring was slick and I was wearing the right shoes.

Fast forward to 2012 and I still moonwalk, but it's a very different moonwalk. I take my camera and try to catch the full moon as it sets. I was moon-walking at 5 am the other morning and snapped these pictures as the moon set. Not bad, considering I didn't have a tripod, or anything to rest the camera on and the fact that I have Parkinson's. 

The moon is almost touching the street

As I was shuffling back towards the house, I realized how much I walked like the astronaut from 1969, stiff and clumsy, like I was wearing a bulky spacesuit. Parkinson's has taken so much from me, but given plenty in return, such as this new kind of moon-walking.  Maybe I can't move like Michael Jackson once did, but I can still wear sparkly socks!

Things Not Known about Parkinson's

This is a Letter to the Editor that I wrote, it was published in the Yuma Sun newspaper in October of 2012. You have my permission to submit it, or your own revised version, to your local newspaper. Let's share the facts of Parkinson's disease with our communities.

This is addressed to all the physicians in my community. I have Parkinson's disease. Here are some things you might not know about Parkinson's:

1. Almost 35 percent of Parkinson's patients never get a tremor — that's right, no tremor. The rest may have action tremor and not resting tremor. The tremor may be on just one side of the body; Parkinson's doesn't have to be on both sides.

2. No one is too young to have Parkinson's disease. I know people who were diagnosed in their teens. It is not in our imagination, we are not faking symptoms, we aren't drinking too much coffee or just anxious. There is definitely something wrong. Help us.

3. Stiffness and slowness of movement are common symptoms. Changes in gait and lack of arm swing when walking are telltale signs. 

4. Parkinson's medicines can cause melanoma, so refer all your patients to a dermatologist for a complete skin check.

5. If a patient presents with upper back, shoulder or neck pain that you can't find a clinical reason for, it could be an early sign of Parkinson's disease. Don't dismiss it.

6. Parkinson's disease can affect our heart, and the medicines we take can affect our blood pressure. Your Parkinson's patient might just need their Parkinson's medications adjusted, not another prescription.

7. Changes in the ability to smell may be an early sign of Parkinson's.

8. Sleep changes, acting out dreams, vivid nightmares are all early signs of Parkinson's.

9. Changes in handwriting, letters becoming smaller and cramped are another early sign.

10. Changes in voice, slurring words and speaking softer are all signs.

11. Changes in facial expression or a blank look are signs.

12. Stooped posture or loss of balance is common.

13. Cognitive changes can be a side effect of the Parkinson's medications, so don't just assume otherwise and add another Rx.

14. Adding another medication to the tons we take isn't always the answer — it could be one of the medications we are already taking that is causing the problem.

15. Refer your patients to a movement disorder specialist preferably or at least a neurologist who knows about Parkinson's. Don't try to treat them yourself; Parkinson's is too complicated. I know, I have it.

Beverly Ribaudo

Do you smell that???

"Do you smell smoke?" "Do you smell gas?" "Do you smell (fill in the blank)?" I was like the Verizon cell phone commercial where the man keeps saying, "Can you hear me now?" I was driving my Wonderful Husband crazy.

I smelled things that weren't there and every non-existent smell was icky. I never smelled anything pleasant, like fresh baked cake or cookies. No roast turkey or pizza. Sometimes the smell would last for an hour; sometimes it disappeared in a minute or two. 

Yummy Cake

I was driving into town to do some shopping and all of a sudden I smelled the distinctive odor of burning wires. Was my car on fire or is it another fake smell? I didn't know, so I pulled into the nearest parking lot. I popped the hood and found nothing. I closed the hood, climbed back in the car and the smell was gone.

I was doing laundry and when I opened the dryer door, I smelled the "skunk" additive that they add to natural gas lines. "We have a gas leak," I yelled to my Wonderful Husband. He came running and said, "I don't smell anything." I took another sniff and the odor was gone.

While watching TV one night, I smelled bleach. We don't even have bleach in the house. I woke up one morning and my eyes were burning. I smelled raw onions. It smelled like someone was holding a whole bowl of cut onions right under my nose. While sitting at my computer desk, I smelled the awful burnt orange odor that was prevalent near the orange juice factories in Florida, but Florida was 2000 miles away. Most of the time, I knew the smells were fake, but with some, like gas leaks or smoke, I had to go and ask, "Do you smell that?" 

Raw onions

My sniffer had gone haywire. The technical term is Olfactory Hallucinations and I guessed that it was a side effect of a Parkinson's medication, but which one? I looked over my Charting Notes and saw a recent increase in one prescription. I asked my Neurologist if we could reduce that particular medication. We did and, for the most part, the "smells" disappeared. Oh, they pop up occasionally, usually in the morning, about an hour or so after I take the first dose of the offending prescription medicine. 

My latest icky smell: Wet dog!


Many people with Parkinson's have a diminished sense of smell. I am fortunate that my sniffer still works. It works too well sometimes. I can't go in to stores where scented candles or soaps are sold, the strong aromas overwhelm my senses and give me a headache. I try to purchase as much unscented home items as possible. Some people have olfactory hallucinations that aren't caused by medication, but by the Parkinson's itself. Every Parkie is different.

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Psyching Out the Neuro-Psychologist

The day of my Neuropsychology exam started at 4 am, since we had to drive 219 miles to Tucson, Arizona for my appointment. We could have gone the day before and stayed in a hotel, but I figured I'd sleep better in my own bed and since I'm usually up by 4:30 or 5, it wouldn't make much difference. I was wrong; I didn't sleep well at all.

The drive over was fairly easy, there's not much between here and Tucson except cactus and jackrabbits, and the rabbits were all sleeping. I did see some interesting signs on the way. The first one read, "Solar is the Answer," then there was, "Christ is the Answer" and finally, "Jesus is the Answer." Right then, I knew I had three possible answers to whatever questions the tester might ask.

We arrived a few minutes early and soon Karin (the Neuropsychologist) called both of us back to her office. The first part of the exam was an interview. I answered all of her questions and my Wonderful Husband bragged to her about my Parkinson's advocacy, this blog, my book and how I'd done a TV interview the afternoon before. I wore my "What's Shaking? Just Me!" t-shirt just for fun and Karin noticed it, so I was pretty sure I passed the "no signs of depression" part of the test. 

My Wonderful Husband was sent out to the lobby and the real testing began. She told me she was going to say three words and I was to repeat them back to her and try to remember them because she would ask me to say them again later. When she said the three words, which I won't repeat here, I smiled because I immediately thought of my good Parkie buddy Jim and his wife Penny.

After the three words, we did all kinds of memory tests. I drew my renditions of geometric shapes she'd shown me. I repeated numbers, forwards and backwards. I answered questions and tried to repeat back stories. I did well with the numbers in the stories, but not so well with the names, which didn't surprise me one bit. I warned her I was good with numbers and terrible with names. I did math problems and connect-the-dot games. 

shape drawings

Then it came time for the dexterity tests, the dreaded pegs-in-holes. I did terrible with my right hand and not much better with my left. No surprise with this outcome, I actually did better than I thought I would. Sometimes, I can't even pick up a fork right-handed, much less a tooth-pick sized peg.

We took a break for lunch, then two more hours of testing and we were done. She said I had an amazing memory and she didn't see any reason why I couldn't proceed with the DBS surgery. She asked me not to detail every single test, verbatim, in this story. I promised I would not and we left.

My Wonderful Husband and I headed back to Yuma, 219 miles away. All the way home, and most of the evening, I kept trying to remember the three words on a list of fifteen that I missed. Karin kept repeating these fifteen words over and over and I would say them back and only come up with twelve. It was driving me crazy.

When I walked with my neighbor Freida the next morning, I was telling her about the tests and how I kept missing three words. She asked me to say all the words to her, so I did. When I was done, she laughed. She said, "You just named off sixteen words, not twelve." Karin was saying sixteen words, not fifteen, and I was repeating ALL of them, not twelve. Apparently, I can't count and talk at the same time. Gee, I hope Karin doesn't read this and change my score.

By the way, I didn't get to use Solar, Christ or Jesus as answers to any of the questions Karin asked.

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Parkie Pizza Party

I am a very lucky Parkie. The counter on this blog hit 50,000 recently, so my Wonderful Husband decided to have a little party. He asked me what I wanted and I said, "Let's make it easy and have Pizza and Cake."

We invited a few neighbors and then I went to the store and found pretty paper plates and napkins (made in the USA), so I wouldn't have dirty dishes. Wonderful Hubby made up a nice salad, bought the cake and ice cream, and soon the doorbell rang. 

Nancy was the first to arrive, carrying a beautiful black vase filled with white daisies. She said, "I remember reading, in your book, that black & white are your favorite colors."

George and Freida, my walking buddies, arrived next, carrying a basket full of gorgeous flowers.

Phil & Ruth soon followed carrying a big vase of bright yellow and orange flowers. 

I was so excited, and overwhelmed, I almost completely forgot about the pizza. Fortunately, my Wonderful Husband did not, he ordered the pizzas, went and got them and we had a nice little party. We laughed and joked and were just plain silly and for a little while, I forgot I had Parkinson's.

Yes, I am a very, very lucky Parkie with a Wonderful Husband and Wonderful Neighbors. Plus I got to eat pizza, and have cake and ice cream. Life is indeed good.

Studying for My Psych Test

I am planning on having the DBS surgery and to qualify, I need to have what is known as neuropsychological testing. This is a big medical word that simply translated means: Is she alright in the head? 

They will check for signs of depression, dementia, cognitive and memory problems. Having any of these isn't necessarily a surgical no-no, but they might follow you more closely afterwards.

Some of my Parkie friends, who have had such tests, gave me advice. They warned me about lists and lists and lists, plus math problems and putting pegs in holes, so I figured I better study before I went.

I'm not worried about the depression part, I'll just show them my blog or sing one of my songs and pass that test.

I didn't have any pegs or holes to practice with, so I used a seven day pill container and a bowl of M&M's. The idea was to put the various colors in the separate sections as fast as I could, but I had a problem, I kept eating them (red is my favorite). 

The math problems shouldn't give me trouble, I was somewhat of a math genius in school and even wrote a computer program to do my homework. However, if they do those "Bob got on bus # 7 at State Street and there were 5 people on the bus, 4 got off at Main Street, 3 got on at Harley Street and 2 got on at Grover Street" and then ask, "What was the name of the guy who got on at State Street?" I will be sunk. I am terrible with names, always have been, always will be. Why do you think I always say Wonderful Husband in these stories? 

I was told they will say lists of words and ask you to repeat them back and the lists will get longer and longer. I can usually remember what is on my grocery list, until I get to the grocery store, then I promptly forget until I am back home. One person said they asked her to name as many items as she could that would be found in a grocery store and started with the letter B. So, I said, "Beer, beer, beer and beer." which is funny since I don't even like beer. The letter C is on my usual grocery list: Cereal, cereal, cheese, cereal, cookies, candy, cereal, croutons, cereal, carrots, cereal, canned veggies, cereal, chicken, cereal, chips, cereal. I eat a lot of cereal.

Well, I guess I have studied enough. I will let you know if I passed or not. 

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Minding your Peas and Carrots

I am not the only reluctant lefty in my neighborhood. Carol, who lives on the corner, had a stroke a few years ago, so she also has difficulty using her right hand. Before Carol left to go north for the summer, Ruth and Phil, who live next door, invited all of us over for dinner. 

We had kabobs, big chunky potatoes and peas and carrots. Carol and I did okay with the kabobs, the chunks of meat and large veggies were easy finger food, the potatoes stayed on the forks as we skewered them but the peas and carrots gave us both trouble. They were too small to pick up with our fingers and fell off our forks on the way to our mouths. We tried spoons, but spilled even more. 

Carol is like me, she jokes about her infirmaries, so we laughed every time a pea rolled onto the floor or a carrot went flying. We kept apologizing and were glad the dining room had tile floors. I think more ended up on the floor than in our tummies. I felt bad for Ruth; she had a mess to clean up after we left, though my Wonderful Husband did pick up all the pieces he could find.

I saw Ruth the other day and she said, "I found another pea under the sofa." and laughed. I had forgotten about the dinner and was glad she joked about it, because I was looking for a funny story. 

So, if you are going to have Carol and me over for dinner, make mashed potatoes. We can use it as glue and mind our peas and carrots. 

Parky in the Dark

Sunday, Sept 9th, 2012 started with a stunning sunrise. The color started slow, just an orange spot in the gap in the mountains. Within minutes, the orange color, now mixed with yellow, spread out and up to the clouds around. It was breath-taking and I was alone as I watched; everyone else was sound asleep.

I turned to head back inside and another stunning sight greeted me, a brilliant rainbow! Wow, this was a fantastic way to start the day.

Sunday rainbow

After lunch, I spent the afternoon trying to decide what photo to enter in my Camera Club's monthly contest (Old Cars was the theme). I chose one and just got it printed when there was a lightning flash and a loud clap of thunder. I checked the radar and saw a storm headed our way. I managed to power off the computers and unplug the electronic stuff when the wind began to howl, the rain came down hard and the power went out.  

Sunday rain

We live in the desert and it seldom rains, and when it does, it's usually what we locals call a ten-incher, one drop every ten-inches. This time, however, the wash behind our house, which is normally dry, looked like a raging river. Our cast iron patio set went tumbling across the yard; the street out front looked like a lake and one of the decorative pots in my front yard floated away. This was one of the worst storms I have seen and I was busy taking video and pictures; trying to capture it all.

Then it was over and we went out to survey the damage. There were many trees down in the neighborhood and lots of overturned patio tables and chairs, but everyone was okay. We had a broken ceramic castle and a washed out mess on one side of our driveway. The power was still out and there was no water. Someone came by and said there were downed power poles along the main road and houses with roofs off, so we considered ourselves lucky.

Washed out along our driveway

We got out the flashlights and then realized we had no candles. We ate sandwiches and sat on the back patio; it was much cooler outside than in. Pretty soon we were sitting in the dark and instead of being stressed out, I enjoyed it. No TV, no computers, no phone (I forgot to charge the cell phone and the battery was low). 

It was just my Wonderful Husband and me, holding hands in the dark, listening to the night sounds. It reminded me of healthier times, before Parkinson's, when we lived and traveled in an RV. Occasionally, we would camp in National Forests, where there was no electricity, and even though our camper had 12-volt lights, we would often sit in the darkness and watch the stars. 

Holding hands

The power and water were still off the next morning. We cleaned up our yard; then cleaned up ourselves. I found out I can wash my hair with a 16-ounce bottle of water! We went out for breakfast, then to our Parkinson's disease support group meeting. We came back home and since the power was still off, went out for an early dinner and then to the Camera Club meeting. My photo, a 1930 Ford Roadster reflected in the fender and hubcap of a 1940 Ford Truck, won People's Choice! 

1930 Ford Roadster reflected in 1940 Ford Truck

When we got back home, in the dark, I headed out to the back patio and the lights came on. I was glad the power (and especially the water) was back on, but I missed sitting in the dark holding hands with my Wonderful Husband. 

You can find all my videos on my YouTube channel:

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

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Parky Proof Packaging

Vise grips

I have been fighting with Kellogg's for almost ten years and I finally won the fight. In the last year of my Dad's life (he also had Parkinson's), I watched him struggle trying to open food packaging and for the last six years, I have had the same struggle myself. The Hunt's pudding cups were the worst, Dad finally resorted to using vise grips (YES, vise grips) to pull the tamper-resistant seal off the plastic containers. I wrote to them several times, complaining about how ridiculously hard they were to open. The response was always the same, "Thank you for your comments, we will forward them on to our product division." Then they would send coupons, so of course, Dad would buy that brand, again, and the fight would continue. 

It was the same with Kellogg's cereal. The plastic bags inside were nearly impossible to pull apart, unless you had Hulk Hogan strength. So, once again I wrote and complained and their response was similar to Hunt's. Well, after Dad died, I gave up the fight with Hunt's. I'm not a pudding fan and if I want some, I will buy another brand, one that IS easy to open. 

Kellogg's was different, though. I like cereal, and Kellogg's is my favorite. Granted, they have made me mad enough over the years, that I purchased other brands, but, just like my Dad, I wandered back to Kellogg's and cursed every time I had to open a new box. So, I kept on writing and complaining, and they kept on saying they would forward my comments on. 

My cereal cabinet

Well, apparently, someone actually read my letters, because this is what greeted me when I purchased my most recent batch of cereal. 

YES, it said Easy Open Bag, in bold print, right on the top of the box. I was thrilled. I couldn't wait to try it, and guess what, it WAS easy to open. Yeah, I won! 

My enthusiasm was short lived, however, when I needed to open a new bottle of Stalevo. I have been fighting this problem for years, so today, I decided to video tape just how difficult it is to open this Parkinson's medicine. Click > to play video.

One Parky friend got so aggravated trying to open a bottle of pills, she hit it with a sledge hammer. Maybe I could use a saw? Or run over it with the car? 

Guess I better write another letter .........

You can find all my videos on my YouTube channel:

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