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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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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