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. 

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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A Parkie Speaks to Future Doctors

My phone rings and it is Adam, the Medtronic DBS Therapy representative from Tucson, Arizona. I met Adam during my DBS surgery and he was with me when I had the final scalp surgery a few months ago. I joke with him about only recognizing him when he is wearing a surgical mask. He appreciates my warped sense of humor. He has called to ask if I'd be willing to come to Tucson speak to a class of first year medical students about living with Parkinson's disease? I say YES! He asks if he may give my phone number to Scott Sherman, MD, PhD, who is the Associate Professor of Neurology at the University of Arizona. Again I say YES. He laughs and says he knew I would say yes and that he'll be back in touch with me after I hear from Dr. Sherman.  

A few weeks later, Dr. Sherman calls me. We talk about my Parkinson's, my DBS and his medical school students. He asks if I will be nervous speaking to a class full of students and I assure him that when it comes to public speaking, I am a pro. I ask him if I could become a patient of his and have him take a look at my DBS settings. I am convinced the settings are causing my mood problems. He says yes and will set up an appointment for the same day I speak to his class. He says either he or Adam will be back in touch to make all the arrangements.

A few days later, I hear from Adam and Dr. Sherman. Adam has made hotel reservations for me and my Wonderful Husband and would like to take us to dinner the night before I speak. Dr. Sherman has made an appointment for me right after lunch on the same day I speak to his students. He warns me his class starts at 9 am and he would like me there at 8:30 am. I say no problem, I'm up early.

My Wonderful Husband and I drive over to Tucson, get checked in to our hotel and a while later, Adam and his beautiful wife Liz, pick us up and treat us to a fantastic dinner at El Corral. He drops us off back at our hotel around 10 pm, and says he'll pick us up at 7 am. Seven? Yes, he says, seven. Dr. Sherman wants to meet me before his first classes start, which is 8 am. So, we set the alarm and go to sleep.

Liz, YumaBev and Adam

Adam is already waiting outside at 6:45 am, doesn't he ever sleep? We meet with Dr. Sherman in the campus coffee shop and everyone except me has coffee (I don't like coffee.) I have a big cup of ice water and a cinnamon roll. We visit for awhile and then Dr. Sherman heads off to teach his 8 am class. It amazes me how down to earth Dr. Sherman is. He's like the guy next door (only a lot more educated). The three of us visit and drink our drinks until it's time to find our way to the classroom. I find the tech guy and make sure my PowerPoint and videos will play and the mic is set for my voice. 

Adam and YumaBev waiting for class to start

The class starts with Dr. Sherman speaking about the medical basics of Parkinson's disease and then it's my turn. Within five minutes, I have the whole class laughing, including Dr. Sherman and Adam. I do my PowerPoint and show the class my before DBS video and then offer to answer any questions. Dozens of hands go up and I answer questions until time runs out and the students have to leave for their next class. After class, I sold a few books, mostly to students who had relatives with Parkinson's. My Wonderful Husband was supposed to be taking pictures, but he got too engrossed in my speech (even though he's heard it before) and forgets. Adam, who was sitting next to Dr. Sherman, tells me afterwards, that Dr. Sherman kept making comments like, "She's right" and "She's funny" and "She really knows about Parkinson's." 

Dr. Sherman's medical students

Dr. Sherman thanked me and headed off to his next class. Adam drove us back to the hotel and headed off to work. We checked out, ate lunch and went to Sherman's medical office for my appointment. I gave him a signed copy of my Parkinson's Humor book and he bought a extra copy for his staff. Then we talked about me and my problems and he adjusted my DBS, giving me a new "A" setting to try for my mood problems. 

I told him that I'd really love to speak to his neurology residents. He said he'd think about it. He thanked me again for speaking and we left and drove back to Yuma. 

Dr Sherman and YumaBev

I tried the new "A" setting and my mood changed back to the Happy Parkie I used to be. The difference was amazing! Come to think of it, so is Dr. Sherman.


My favorite quote of the day? Dr. Sherman, "Well, you have either just convinced them all to become neurologists or scared them so they won't!" Hopefully I encouraged them to become more than neurologists, hopefully, I encouraged them to become Movement Disorder Specialists! 

Parkinson's is a Little Disease

In my bio, I reference Parkinson's as a little disease and even though Parkinson's disease has a HUGE impact on the lives of those affected by it, it is, in many ways a "little" disease. Let me explain. 

Parkinson's disease is caused by the death of little neurons in the little kidney bean sized areas of our brains called the substantia nigra. Neurons are little, very little; it would take hundreds to form the period at the end of this sentence. 

See how little the area is?

With Parkinson's, you tend to get little. Your handwriting gets little, your steps get little, your movements get little and even your voice gets little.

You don't wake up one morning with full-blown Parkinson's disease; it sneaks up on you a little at a time. Michael J. Fox, probably the world's most famous Parkie, noticed that his little finger twitched a little, not a whole bunch, just a little.

Parkinson's makes it difficult to do little things, like button buttons, thread a needle or shave your underarms. 

If you ask the experts, and they give you an honest answer, they will say little is known about Parkinson's. I asked my primary care physician how much he learned about Parkinson's in medical school, and his answer was, "Very little."

Every EMT and paramedic knows the signs of Heart Attack and Stroke, but most know little or nothing about Parkinson's. Heck, even hospitals know so little about Parkinson's that the National Parkinson Foundation created a little Aware in Care kit to educate them.

Holding my Aware in Care kit

When I went for the consultation for DBS surgery, the Doctor said, "We will drill two little holes in your head and insert little leads, which will be connected to a little generator."

When I started writing these little stories, I had no idea they would be read by so many people on this little old planet in the middle of a huge universe. So, I promise not to let this little disease take away my big sense of humor.


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Time will Tell

Today, August 30, 2013 is the six year anniversary of my Parkinson's disease diagnosis. Many things have happened during that time; some good, some bad, and some I can't remember.

Time seems like it's flying by, and my concept of time has diminished. When my Doctors ask me questions like, "When did these symptom start?" or "How long ago was this test done?" I have no idea whether it was last month, or six months ago. I have to go home and look it up. I have a medical file on my PC, so the tests are easy to find. I have kept a daily journal, something I have done for years, so I can go back and see just when that particular symptom started. Without these, I'd be lost. 

It's not just medical things that I can't remember. I can't remember when I last saw friends or when I went to see a show and this concerns me. I'm sure my Parkinson's has progressed, even though my motor symptoms haven't; due to the Deep Brain Stimulation surgery I had done in October 2012. 

I have been through a lot this year; breast cancer surgery, three other surgeries, and way too much stress. Has this caused my "time" problems or is it something else?

I don't know, but maybe, come next August 30th, I won't remember any of 2013 and that might be a good thing. Time will tell...

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DBS: Oops, We Have a Scalp Problem

My final visit with Dr. Norton, the neurosurgeon who did my DBS surgery in October of 2012, should have been in January of 2013, but life got in the way. My Wonderful Husband had some health issues and couldn't drive, then there was a freak blizzard in Tucson which required cancellation of an appointment and then I caught a bad cold and had to cancel another appointment. I finally got to see him in late March 2013. Dr. Norton checked my DBS settings, took a quick look at my incisions and declared me "done with him." He said I should have any follow up programming changes done with Stephanie or with Adam, the Medtronic representative when he comes to Yuma. I gave him a hug and we headed back home.

April of 2013 came and all hell broke loose. I had an abnormal mammogram, which required an ultrasound and then a biopsy. No big deal; this had happened before, so I wasn't concerned. I guess I should have been, because on April 15, 2013 I was told I had cancer in my right breast, and the tumor was just below the DBS generator in my chest. The surgeon I met with in Yuma had never seen a DBS generator before and that made me nervous, but surgery to remove the tumor was tentatively scheduled for May.

Then on April 20, 2013, I felt something "gooey" on my scalp, near the right cap from the DBS surgery. It wasn't blood, just oily. My Wonderful Husband looked and couldn't see anything, until he got out a magnifying glass. There was a very tiny, pin head size spot, where he thought he could see wire or a screw. Phone calls were made, photos taken and enlarged and then emailed to Tucson. 

The spot was really very small, this has been magnified.

Dr. Norton called me very early on Monday morning, April 22, 2013 and said we'd better come right over. So we packed some clothes and took off. He took a look at it and decided it was a wire showing, but that it hadn't come through the skin, yet. It needed to be fixed so surgery was scheduled the next day. 

While I was there, I told him about the cancer and my nervousness about the Yuma surgeon who'd never seen a DBS unit before. His answer, "I'll take care of it and get you the best breast surgeon in Tucson." Dr. Norton called me later in the day to say he'd made an appointment for me on Wednesday with a Dr. Roeder. 

Tuesday, April 23, 2013 I was back in the Operating Room with Dr. Norton. He re-shaved the right side, cut me open, re-arranged the wires and sutured me closed.

On Wednesday we met with the breast surgeon, scheduled the cancer surgery for May 7, 2013 and headed back home to Yuma.

We went back to Tucson on May 3, 2013 to have the scalp sutures removed. Since my cancer surgery was scheduled for a few days later, we just stayed in Tucson. On Monday morning, my Wonderful Husband looked at my scalp and there was a spot that didn't "look right," so back to Dr. Norton's I went.

My scalp had pulled apart between where two of the sutures had been, so I was scheduled to have it fixed, again, on May 9, 2013; two days after my cancer surgery.

Dr. Norton once again, re-shaved the right side, moved the wires some more, and put in even more sutures. This time, he let the sutures in longer and I went back on May 20, 2013 to have them removed. 

I also had a follow up with Dr. Roeder the same day, she said they'd gotten all the cancer, so I decided against any follow up treatment. The oncologists I saw were recommending radiation, but that would have required moving my DBS generator, but after all the scalp problems I had, I said NO.

All went well for about ten days, then my Wonderful Husband spotted some tiny whitish things sticking out of the incision on my scalp. More photos were taken, enlarged and emailed to Tucson. Dr. Norton decided to call in an expert, Dr. Ley, a plastic surgeon to fix my scalp this time.

The white things are Vycril sutures working their way out

On Friday, May 31, 2013 we went back to Tucson and stopped to see Dr. Norton and then went to see Dr. Ley. It seems the tiny white things sticking out of the incision were Vycril sutures, ones that are put under the skin and should have dissolved. Only in my case, they didn't. Instead, they tried to work their way out through the now closed incision.

Dr. Ley said he should be able to fix it and surgery was scheduled for the following Friday, June 7, 2013. Since he had never operated on a person with wires under their scalp, one of the Medtronic representatives, Adam, came to the hospital to show him where the wires were located. My surgery was done on Friday night. Dr. Ley did what he called z-plasty and used a different type of under-suture, just in case my body was rejecting the Vicryl sutures from before. So, once again the right side of my hair was shaved, a little bigger area than the previous times. This time it was much more painful, plus not only did he suture the incision closed, he also used a surgical glue called dermabond.

Z-plasty with sutures and dermabond glue on my head

It was close to 11 pm before I got out of the hospital, so we stayed in a hotel right next door and met Dr. Ley on Saturday morning at his office nearby. He gave me the all clear to head back to Yuma, told my Wonderful Husband what to look for and scheduled a follow up appointment for June 24, 2013.

Dr. Ley and YumaBev at his office Saturday morning

Everyday my Wonderful Husband would look at my incision and it all looked good. As my hair grew back, it lifted the glue off my scalp and itched like crazy, but I didn't touch it. Finally, June 24, 2013 came and we went back to Tucson. Dr. Ley very carefully cut away the glue and removed the sutures. It took more than an hour. After he was done, he said he thought it would be just fine, and it was! There was an occasional piece of blue suture that would pop up, but within a day, it would fall out on it's own. 

The reason this happened was no one's fault, I just didn't have any extra skin on my scalp. Dr. Norton has done well over 700 of these surgeries and I am the only patient he has had this problem with. However, he now uses a different method of opening and closing the scalp, just in case. There was NEVER any infection.

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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.

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Saying Goodbye

My beloved Dr. Zonis is retiring and closing his practice. I am very happy for him and his beautiful wife Perla. They will have lots of free time; to travel and spend time with their family. He has been my "superhero" for almost six years and has been helping other patients for over 38 years, so he really deserves his retirement, but at the same time I am sad.

I will really miss both of them. He has been more than a Neurologist to me; I think of him more as a friend (even though I only saw him as a patient.) I gave him a big hug at my last appointment, as always, but I didn't know that might be the last time I would see him. And that makes me sad, too.

Bev and her beloved Dr Z

As a patient with Parkinson's disease, my choices for a new Neurologist aren't too difficult because there are Movement Disorder Specialists in Phoenix, Tucson or San Diego (3+ hour drive each way.) At least for now, I can drive to see one of them, however many others here in Yuma can't make that kind of a drive, so I have been calling other Doctors in Yuma (familiar with Parkinson's), trying to put together a list for those support group members.

I'm not sure how to say Goodbye to a couple like Dr Zonis, his wife Perla and his wonderful staff. I guess I really don't want to.

PS Dr. Zonis got bored being retired and re-opened his practice in January 2014.

23andMe; Why I Spit for PD

23andMe is a personal genetics company based out of California, and as a research partner with the Michael J Fox Foundation, they are trying to find genetic markers for Parkinson's disease and those already diagnosed with Parkinson's can get their tests done for free. 

I ordered my free testing kit more than a year ago. It was easy; spit in a tube, send it back, fill out some surveys online. My results were surprising though. There is absolutely no doubt that I have Parkinson's disease and yet my results came back saying I was "Below average" risk for Parkinson's. My results also said I have a "Below average" risk for breast cancer as well. Looks like even my genetic profile has a warped sense of humor!

YumaBev's DNA results for Parkinson's 

How can this be? Well, it just means that my Parkinson's isn't due to one of the known genetic mutations, such as LRRK2 that has been making the news lately. So, how did I end up with Parkinson's?

My Mom

Soup. Yes, soup. When my Mom's egg and my Dad's sperm got together, a pot of genetic soup was created from combinations of each of their respective DNA. My DNA soup dictated that I would get my Mom's hourglass figure, button nose and her phenomenal sense of humor. Unfortunately, it also dictated that I would have my Dad's thin straight oily hair, his big crooked teeth and quite possibly HIS Parkinson's as well. Things could have been worse; I could have had his nose.

My Dad

As for my breast cancer, I'm pretty sure my genetic soup had nothing to do with it. I think my breast cancer was caused by a hormone replacement therapy drug prescribed to me by a local gynecologist back in 2010. 

I am not complaining about my soup. Sure, I wish I didn't have Parkinson's, I wish I had thick curly hair, too. But I do have Parkinson's and my hair is getting thinner every year. As for the breast cancer, I am upset, I was NEVER told this medication could cause breast cancer!

So, if you have Parkinson's, won't you consider spitting for 23andMe? Maybe, just maybe, our collective giant pot of Parkie soup might one day, lead to a test for Parkinson's or even a cure. 

IF you haven't been diagnosed with Parkinson's and are still interested in getting your DNA soup analyzed, you still can by following this link 23andme for non Parkies! There may be an extra shipping fee if you are not in the USA.

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A New Challenge for Bev

It's been awhile since I've written a new story and I apologize to all my readers. 

In February of last year (2012), I had an abnormal mammogram, which is not unusual for me. I can't remember ever having a "normal" mammogram. Just prior to my DBS surgery, I found a lump in my right breast and told no one, not even my Wonderful Husband. Why? I was afraid it would make me ineligible for the DBS IF it turned out to be cancer. As soon as I had my final DBS follow-up (March 2013), I went to my primary Doctor, told him about the lump and had another mammogram and, of course, it was abnormal, again. This time they ordered extra testing and I found out it was cancer on April 15th. 

Do I regret not doing anything about it sooner? Absolutely not. Why? Because to me, QUALITY of life is way more important than quantity and I don't think I could face what's ahead without the DBS and how much it improved my quality of life. However, keeping this secret almost destroyed my marriage. My Wonderful Husband's first wife never woke up after brain surgery and it turned out she had cancer. I didn't want to put him through that again, so instead, I tried to push him away. I said mean and hurtful things to him and actually told him to leave.

Fortunately, for me, he's just as stubborn as me (maybe more so) and he didn't leave. Keeping my secret took it's toll on me as well, the stress of not knowing is worse, I think, than the cancer itself. 

SO, here's the plan, for now. My lumpectomy is scheduled for May 7, 2013 in Tucson. Dr. Thomas Norton (my DBS surgeon) got me the best surgeon he knows, Dr. Roeder and we have requested Dr. Robin Kloth to be the anesthesiologist (she got me through the DBS, so I trust her). Once the lumpectomy is done and all the bits and pieces Dr. Roeder removes are examined, in detail, I will find out if it has spread to my lymph nodes. My guess is it will be a week before we know more. More stress of not knowing to deal with. After that, radiation of some kind or another and maybe chemo (let's hope it's just radiation). 

Because of my Parkinson's, the recovery time will be longer and because of my allergy to anything sticky, I decided against a mastectomy. Did I make the right choice? I don't know. That's the problem with breast cancer. You have to decide which surgery you want and then find out if it was the right one.

So, wish me luck, say a prayer or two for me and say three or four for my Wonderful Husband and hopefully I will be back being silly very quickly. Besides, my Wonderful Husband treated me to a new sequin gown,  so I have to get well enough to actually wear it somewhere.

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