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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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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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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Partners in Parkinson's

Yesterday, Jan 30, 2016, my Wonderful Husband and I got up at 4:20 am, left our home in Yuma, Arizona at 5 am and drove 185 miles (300 km) to attend the Partners in Parkinson's event in Phoenix. 

We have been to many Parkinson's disease conferences over the years and have even helped plan some in our own hometown, so why get up early and drive so far to attend yet another one? This event was being sponsored by the Michael J. Fox Foundation and I wanted to see if it would be different. I was also hoping to see some Parkie friends.

When we got inside, one of the first people I saw was Carl Ames. He was staffing the Davis Phinney info table. As I looked around, I noticed there were no pharma or Medtronic tables. The info tables were for PD foundations, speech, occupational and physical therapy providers, exercise & wellness programs, research facilities and other resources for Parkies. 

We got checked in, got some breakfast and went to find a seat. The place was packed. They announced later that this event had the highest attendance so far, over 1100 people!

The event started with a moderator, Dave Iverson, a nationally known journalist who has Parkinson's himself. He interviewed three local people with

Parkinson's on how & when they got diagnosed, and how Parkinson's has changed their lives since. One of them was Brian Baehr, who I met several years ago, at a Davis Phinney event. Brian believes that exercise and challenging himself has helped him a lot. Another one was Jean Burns, a humor blogger like myself, and an ambassador of the upcoming World Parkinson's Congress in Portland, Oregon (Sept. 20-23, 2016.) I met Jean several years ago as well. The third person was new to me, but like Jean and Brian, refused to let Parkinson's beat him. The audience members were encouraged to write down questions for them. 

The next session was a re-enactment of an appointment with a Movement Disorder Specialist using a recently diagnosed man, his wife and a Phoenix area physician named Holly Shill, MD. Since many people with Parkinson's are treated by their primary care physician or a general neurologist, this session gave some insight as to why seeing a Parkinson's specialist could be beneficial. A short break was taken after and many people went up to speak to Dr. Shill. I introduced myself to her and was surprised when she said "I've heard about you from my patients."

The next session was Dave interviewing three people directly involved in research. We learned about potential new therapies in development and some trials that ended in failure (CoQ10 and Glutathione.) They all stated the known fact that so far, there is nothing out there that can slow down, stop or cure the disease and warned people not to be exploited by hucksters proclaiming a cure. Many clinical trials end abruptly because the people taking the placebo (sugar pill) show the same or more improvement than the ones who actually get the therapy being tested . Why is this? It is because just thinking that something will work, can cause your brain to produce more dopamine. This extra boost can make it seem like it is working, but unfortunately, the effect doesn't last. 

The event had a very patient centered format. There we no physicians using big fancy words, no complicated slides designed to impress other physicians. Just a Parkie interviewing people who answered in terms everyone there could understand. They weren't pushing drug A or a particular surgical intervention. They talked about all the various choices of symptomatic relief, but just in general terms. In my opinion, Dave Iverson did an excellent job of moderating this event. He asked the kinds of questions that I myself might ask if I was ever given the chance to speak to these type experts.  

They provided us with a tasty lunch and because of the long drive home, we left right after the next session, which was how to go about getting a team together to help you navigate this journey. On our way out, we saw Mick. Mick met us in the hospital cafeteria the day before my DBS surgery back in 2012. Mick &  I have been online friends for years, but rarely see each other in person, except at Parkie events. It was nice to see him looking so well. 

I gave out a few cards promoting this blog, and we headed back to Yuma. We got home just before dark. If there is a Partners in Parkinson's event near you, do yourself a favor and go. You might learn something, meet some nice people or find a new Doctor. If you go, be sure to tell Dave Iverson that YumaBev says hi.  

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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?

Let's Talk About Parkinson's Medications

This blog story is about MY experience with Parkinson's medicines.

Since my DBS surgery, I take a lot less Parkinson's disease medications, but I still have people asking me questions about side effects, drug interactions and what particular meds I take or took. Everyone reacts differently, so only YOU and YOUR Neurologist can figure out what works best for you. 

I am not a Pharmacist or a Doctor, I am just YumaBev, the Happy Parkie, so I will share only my personal experiences. You should ALWAYS consult your own Neurologist or Pharmacist regarding medication dosages and side effects. 

That being said, here are some useful tips I've learned over the years:

1. Use the alarms feature on your watch or cell phone as a reminder to take your meds. In my warped sense of humor, my "drug alarm" ringtone is the song, I Want a New Drug by Huey Lewis. 

2. Never start a new medication (or increase the dosage) on a Thursday or Friday, because if you have a bad reaction over the weekend, you won't be able to get in touch with your Neurologist before Monday.

3. Some side effects, like nausea or sudden sleepiness, may go away within a month or two.
Other side effects, like dyskinesia, edema (swelling of legs, ankles or feet), cognitive problems (some have referred to this as brain fog), insomnia or obsessive or compulsive disorders may take a while to show up or become worse with age or the longer you take a medicine.

4. Ask your Neurologist exactly what times you should take your meds and what other things, including over-the-counter medications, supplements or foods such as proteins, aged cheeses, alcohol, caffeine, etc. you should avoid. Also ask what kinds of over-the-counter cold medications or pain relievers are safe to use. 

5. Make sure your Doctors know EVERY medication you take, including supplements and over the counter meds. Don't lie about how much alcohol you drink or how many pain meds you take. A friend nearly died because he lied to a Doctor about how much prescription pain medication he was taking prior to an outpatient procedure and he had a severe reaction when they gave him anesthesia. If you use cannabis, make sure your Neurologist knows this, too.

6. If you need to be hospitalized, ask the admitting physician to put in writing that you may take your OWN Parkinson's medications while hospitalized. If you can't do this, make sure YOU know exactly WHAT you take and WHEN you take it and tell EVERY medical person you encounter that you NEED your Parkie meds on time. Check with the nurse to make sure they are giving you the CORRECT medication and dosage EACH time. Do not let them substitute unless your Neurologist okays the change. A lot of neurologists don't have hospital privileges, so be careful. 

7. If a medication begins to make you feel worse or the side effects become unbearable, tell your Neurologist as soon as possible. Don't stop taking meds cold turkey, unless you are advised to do so by your Neurologist. Many Parky meds require weaning off.

8. Some Parkinson's medications (or the disease itself) MAY increase your risk for certain cancers, including melanoma skin cancer, breast cancer (men can get it, too) and prostate cancer, so have regular screenings.

Okay, now here's my medication story. Keep in mind that my reactions to various medications may not happen to you.

Back in 2004, a Neurologist thought I had Essential Tremor, so the very first medication I was ever given was a beta blocker called propranolol. It is used to treat high blood pressure and irregular heartbeats as well as prevent migraines and chest pain (angina). It can also help reduce tremors. It worked fairly well at controlling the action tremor in my right hand, but didn't help anything else. My normal blood pressure is low, and the medicine slowed my heartbeat so much that, over the years, I became winded just walking to our car. The dose was lowered and I could walk without wheezing like a 98-year old man, but the tremors returned. 

In 2007, a different Neurologist figured out I had Parkinson's and I was given carbi/levodopa 25/250 and told to stop the propranolol, unless my tremors got worse. They didn't. I was told to take 1/2 a pill three times a day on an empty stomach, so I took them at 8 hour intervals. Nausea was an early side effect, mostly when I took my first pill of the day. I found, by accident, that if I took my pills with lemonade instead of water, the nausea disappeared. Then we adjusted the times I took my pills and found, for me, taking them at 8 am, 2 pm and 8 pm worked better at controlling my symptoms and made scheduling meal times a lot easier for my Wonderful Husband. Later on, the nausea disappeared completely. After approximately three months, I began waking very early. The nights of only 4-5 hours of sleep continued until after I had the DBS surgery. 

After about 6 months, my Neurologist tried prescribing Stalevo 100, which is a combination of carbi/levodopa and entacapone. I didn't see any difference and I had the unpleasant side effect of a burning sensation when urinating and my urine was dark yellow, so we went back to the plain carbi/levodopa.
   
Later, he added pramipexole which is a dopamine agonist and I started with the 0.125 mg dose, three times a day. When he upped the dose to 0.25 two weeks later, I made the mistake of starting it on a Thursday. By early Saturday morning, I felt like I had taken a bottle of No-Doze followed with a pot of coffee. My heart was racing and we ended up driving to the local fire station, waking up the EMT who was on duty and having him check my blood pressure. It was sky high as was my heart rate. Needless to say, I stopped taking it and called my Neuro first thing Monday morning. 

I went back on the 0.125 dose and after a few weeks, the sleep attacks began. All of a sudden, I just had to go to sleep. I just could not stay awake. I once fell asleep while eating lunch. Fortunately, that side effect went away and I stayed on the 0.125 mg dose for a couple of years.

Later, I went back on the Stalevo 100, and got used to the burning sensation when urinating, and after a while, I started taking Stalevo 150, still three a day. Later, we tried Stalevo 200, but the dyskinesia was terrible, so we went back to the 150's. We tried the 150's four times a day, but that was too much also. 

Since I couldn't tolerate higher doses of pramipexole, we tried a different agonist, ropinirole. He started me out on a low dose, 1 mg, three times a day and all seemed to be fine. No racing heart and my blood pressure was normal. A few months later, I began spending hours and hours online, mostly in a Parkinson's chat room. This was also the time when I started this blog. I was glued to my computer screen all day and half the night. I had to be dragged away to eat. The worst part was I didn't even realize that I had become obsessed with all things Parkinson's. The only good thing about my obsession, is this blog and the creative song parodies I wrote while on ropinirole. 

Later on, my "off" times were increasing, so he upped the dose of ropinirole to 1.25 mg, still three times a day. All was good for a few months, then my ankles started swelling and the olfactory hallucinations started, so back down to the 1 mg we went. 

As a last result, he prescribed Stalevo 100's five times a day (a lower dose, but more often). My symptoms were better controlled and all was well for a month or so, then my cognitive functions started diminishing. Within a few months, I couldn't even answer simple questions because by the time my muddled brain could formulate an answer, I'd have forgotten the question. This was a very scary time for both myself and my Wonderful Husband. Why the extra doses caused problems is unknown as I had been taking 3 a day for years with no problems, but my Neurologist has had several patients who had the same complaint. 

Finally I'd had enough, I went back on plain carbi/levodopa 25/100's five or six times a day, and told my Neuro maybe it was time to consider DBS. After about two months, most of my "brain fog" was gone and I was able to pass the neuro-psychological testing with flying colors. 

During my overnight hospital stay for my DBS surgery, a nurse tried to give me the wrong medicine, he tried to give me 1 mg of pramipexole instead of ropinirole. Since 0.25 mg had sent my heart rate and blood pressure through the roof, can you imagine what FOUR times that amount would have done? And they had just drilled holes in my head! Their pharmacist had it listed as an equivalent substitute. Before I left, another nurse tried to give me the wrong dose of ropinirole, but I caught that mistake as well and refused to take it. So, you need to know EXACTLY what you take.

Since DBS, I no longer take the agonist ropinirole and I doubt I will ever take it or any other agonist again. I just take plain old carbi/levodopa 25/100 as needed, which is usually half a pill 2 or 3 times a day.

Just because I had the above listed side effects, doesn't mean you will. You should be aware of all the potentially serious side effects of ANY medications, not just Parkie meds. Discuss ALL medication changes with YOUR DOCTORS. 

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Knowledge is Power with Parkinson's Disease

Today, July 10, 2014 marks the 11th anniversary of my Father's death. Even though he didn't die of Parkinson's disease, it was a huge contributing factor. 

Back then, I didn't understand when the staff at the hospital said, "Parkinson's makes everything worse." I didn't understand that his dementia may have been caused by the many different medications he was taking. I didn't understand why he seemed to have lost his sense of humor. Why he no longer made witty, sarcastic quips. Why he no longer laughed like he used to. 

I didn't understand why it was painful for him to put his arms behind his back to put on a jacket or raise his arms above his head to take a tee shirt off. I didn't understand why he would just sit and stare off into space when he used to love to play golf or read books or go to shows and plays. I didn't understand why his nose would run or why he'd sometimes drool on himself and not seem to even realize it. I didn't understand how he could fall just by turning around in the kitchen. I DO NOW.

Back then, I didn't understand a lot of things because I didn't know much about Parkinson's. I only knew that people with Parkinson's had shaky hands. That was it. I knew nothing about the rigidity, slowness, cognitive problems, facial masking or balance issues. I was totally clueless. 

Heck, I didn't even realize, way back then, that I already had Parkinson's disease myself, for at least 5 years. I remember asking my Father's neurologist, if maybe my problem with my right hand was Parkinson's and his reply, "Don't waste my time, your problem is orthopedic not neurological." He was totally wrong and it makes me wonder, just how much about Parkinson's HE knew? 

The point of this story is knowledge is power. As a Parkie or their care-partners, you need to learn about this disease. You need to know that Parkinson's will even make getting over a cold take longer. You need to know that the medications we take can have serious side effects and that other medications can interact with them as well. You need to keep learning and fighting and laughing and forcing yourself to keep moving and interacting with others. If you don't, then Parkinson's will win.

I miss both my parents every day, and I have photos of them on my walls. When I look at their smiling faces, I remember the good times. I will not give up, I will not give in, I will not hide in the dark. If I can still do it after having this damn disease for more than 15 years, you can to. 

YumaBev's Mom and Dad

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Apathy and Parkinson's Disease

Definition of Apathy: 
   1. Lack of passion, emotion, excitement
   2. Lack of interest, a state of indifference
   3. Lack of motivation

Apathy can be a major non-motor symptom of Parkinson's disease. Combine it with fatigue, another major non-motor symptom, and it's no wonder we Parkies can be seen as lazy, disinterested or uncaring by friends, family and even strangers. 

What causes apathy in people with Parkinson's? It is believed to be due to chemical changes in the basal ganglia part of the brain. Dopamine is not only the primary neurotransmitter for motor control and movement, but it is also necessary for goal-oriented behavior, enjoyment and motivation. In other words, dopamine is our "feel good" chemical and as the dopamine levels in our brain get less and less, we no longer enjoy the things we used to and we become more apathetic. It's not that we DON'T care, it's that we CAN'T care. Our dopamine deprived brains just don't work like they used to.

I am just as apathetic as the rest of you. I used to enjoy going to karaoke, but it's in the evening and by that time of day, I don't feel like going out. After dinner, it's easier to put on my pajamas and watch TV instead. I was never into card playing or crafts, and I'm not a reader, so I am bored, a lot. I have a problem with my neck/shoulder which is aggravated by computer use, so I don't even spend much time online anymore. I'm not a cook and cleaning also aggravates my shoulder, so mostly, I do nothing (thank goodness my Wonderful Husband cooks and helps with the cleaning.) I have closets full of clothes I don't wear, so I can't even get interested in going shopping. 

I did, however, start walking again. I walk alone in the mornings and with a neighbor in the afternoon. I used to enjoy talking on my walks, but now I mostly listen, as I have developed some speech problems and I can tell people have a hard time understanding me. 

About the only things I DO look forward to are social interactions with friends and neighbors. I usually don't say much (the speech thing), but I enjoy listening. I have always enjoyed being around people and I still do. 

So, next time a social invite comes your way, say YES! Force yourself to get up and get out and get moving. You might actually find yourself ENJOYING it. 

The Good, the Bad, the Ugly and My Sequin Dress!

I never had any problems writing humor stories about my life with Parkinson's disease. I'm not sure why, but I think it's because I felt terrible prior to getting diagnosed and within a day or two of taking carbi/levodopa I felt a whole lot better, so sharing my happiness was easy.

Breast Cancer is different. I am having a hard time finding anything funny about it. Prior to my diagnosis, I felt fine. I didn't have any pain. Sure, I had the lump in my breast, but I assumed, like most of the Doctors who examined me, that it was scar tissue from a previous benign biopsy. It wasn't, of course, so like Paul Harvey would have said, "Here's the rest of the story."

May 7th, 2013 started way too early; we went to the hospital, where I got into the lovely surgical gown and way too big surgical socks. A nurse did the usual list of medications, allergies, weight, blood pressure, have you eaten, blah, blah, blah and then the fun began...

First, I went to radiology, where they injected radioactive stuff into my right breast. From there we went a few blocks away to another building where they put a locator wire and some blue dye in the same breast. A mammogram was done to make sure the wire was in the right spot and then it was back to the main hospital.

Next we were off to the obstetrics department where they normally deliver babies, I'm not quite sure why I went there instead of the main operating room, but I didn't ask. A nurse started an IV in my arm and within minutes, I complained that it felt strange, so she took it out. The anesthesiologist came in, said she'd do the IV in the surgery and off we rolled. 

The next thing I remember is waking up and feeling like I was in an oven. They had hot blankets piled on top of me, trying to stop what they thought was me shivering uncontrollably. I wasn't shivering at all. I was having internal tremors from being off my Parkinson's medicines and having my DBS unit turned off all day. They quickly removed the blankets, but I was over-heated and ended up getting sick to my stomach. Guess I have to add one more thing to my "hospital" list, or better yet, I think I'll just stay away from hospitals altogether. 

While I was still in recovery, I went to reach for something with my right hand and my arm wouldn't move at all. This was very bad. You should have seen the faces of the Doctors and Nurses, they went completely white. They didn't know what to do. The surgical staff couldn't get in touch with any of the local neurologists or neurosurgeons because they were all in Phoenix watching a new DBS procedure. I had them go get my cell phone from my Wonderful Husband and call Dr. Maria De Léon, a Movement Disorder Specialist who also has Parkinson's. Thankfully, I had her personal phone number and she told the Surgeon what had happened to my arm.  

Fortunately, the feeling slowly returned and now, three months later, my right hand and arm are back to pre-surgery normal. What caused this, who knows? But it's another reason for me to stay away from hospitals.

We left the hospital that evening and came home a few days later. The Doctor called on Friday and said something like, "The margins were clean and so were the lymph nodes, so we think we got it all." This was very good news. 

The ugly bruise on my arm from the "strange feeling" IV is still visible months later, but the blacks and blues from the breast surgery disappeared within a month. How strange is that? By the way, I was showing off my newest sequin gown at a party for the APDA in Arizona just 10 days after surgery!

Ugly bruise is still visible months later

YumaBev in her newest sequin gown.

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

So, Sew, So

I made my first outfit when I was nine or ten. It was a simple pattern; shorts and a matching top. I learned how to sew in a Girl Scout class and soon made many of my own clothes; a tradition that continued well into adulthood. 

First outfit

I liked having outfits that were unique. I also found; because of my size and shape, I had trouble finding clothing that fit. I was forever altering skirts and pants to fit my very tiny waist. Even when I worked at Disney World, which had the largest inventory of uniforms in the world, my skirts had to be altered to fit. Mostly I made clothes for myself but I did make a blouse for my Mom.
  

Blouse for Mom

As I grew older, my shape evened out somewhat, though I still have trouble finding pants and skirts that fit. I loved making evening clothes; sparkly dresses, silky blouses, wild print skirts. It was not uncommon for me to drop my first husband off at work (he worked in a nightclub as a deejay) at 8 pm, stop at the fabric store on the way home, make myself an outfit and be back out at the nightclub at 11 pm wearing it. After his death, I went back to work in an office and switched from making evening wear to business attire.

My Bridesmaids dresses

When I met and later married my 
Wonderful Husband, I made my Bridesmaid's dresses and a matching one for myself. No hideous dresses for my girls; I wanted them to be able to wear their gowns for other occasions and they did! I stopped sewing about seven years ago; my manual dexterity had deteriorated to the point that I couldn't even thread the needle. I almost sold my machine, but couldn't bring myself to do it. It was an expensive machine and I made weekly payments on it when I was just 19, so I covered it up and put it in a closet.

Look alike dolls

After my Parkinson's diagnosis and medications that gave me some relief, I dug the machine out again. I couldn't do the really fancy stuff I used to. Most of my clothing these days is designed to be easy on and off. I did manage to make look-a-like dolls for our 23rd wedding anniversary and a basic quilt for our bed, but other than to shorten pants, my creating clothing days were over, until this summer.

My shirts before project

I had a closet full of shirts that I loved, but could no longer wear because I couldn't do the buttons. So, I started a project. I was going to cut off the excess and make all these blouses tie in front style. In my old sewing days, this would have been an afternoon project. Instead, it took three months, but I finally finished them. I took the extra fabric I cut off and made hatbands for my cowboy hat, so now I can match my hat to the shirt. It was fun to make something unique again and even more fun when people say "I love your top and matching hat." Here are a few of my creations.

Living with Parkinson's can be a challenge, but instead of focusing on what you can't do, or what you used to be able to do, focus on what you CAN do. Have a Happy Parkie Day!