How Long have You had Parkinson's disease?

I get asked this question, a LOT and I really don't know how to answer it correctly. I was OFFICIALLY diagnosed at age 47, on August 30, 2007. But is THAT the correct answer?? 

The Judge at my Social Security Disability hearing decided my Parkinson's began a year earlier, on August 1, 2006, but was she correct?

I used to THINK my Parkinson's started in the summer of 1999, when I couldn't make my right index finger double click my computer mouse at work, but was it THEN?

Or did it start EARLIER? Like back in 1995 when my handwriting suddenly got smaller.

My Wonderful Husband says my right hand had a very slight tremor before we got married, and that was back in 1985. So, was it THEN?

Or does it date back to my childhood? I was acting out dreams (and scaring both my parents or the neighbors I would awaken by ringing their doorbell at 3 am) when I was about nine or ten.

Does it have to do with the big crack in my skull I got when I attempted to occupy the same intersection at the same time as a UPS truck at the ripe old age of six?

Does it date back to my birth? My Dad had Parkinson's. Is it a family thing?

The answer is: I DON'T KNOW.

NO ONE KNOWS. Not my Doctors, not the experts, no one.

But does it really MATTER?

Except for the purposes of determining the amount of my disability check, I'd say NO, it doesn't really matter.

BUT, how do I answer the question when I am asked?

I usually say since 1999, because that's when I became AWARE that there was a problem. Prior to that day when I went into work and couldn't double click my computer mouse, I was OBLIVIOUS. 
I didn't even NOTICE that my handwriting had changed. I only realized it a few months ago while researching a story for my book, Parkinson's Humor.
I didn't KNOW I had a tremor when we got married until hubby mentioned it to my Doctor a few years ago.

So, maybe the best answer is...


TOO LONG!

A Parky Christmas Wish

'Twas the night before Christmas, and all through my home,
This Parky was stumbling around in the dark, alone;
The stockings were hung by the chimney askew,

Because that’s the best this Parky could do.

The children were sleeping, I heard sniffles and sniffs,

As I was struggling, to wrap their Christmas gifts;
And hubby was sound asleep, I could hear him snore,
As my foot cramps made me, hobble across the floor.

When out in the kitchen there arose such a clatter,
As I dropped and broke the big turkey platter.
I tried to pick up the pieces, to put in the trash,
And ended up giving myself a nasty old gash.

I tried to bandage my hand, to stop the blood flow,
But it was difficult, because I move so slow,
As I was trying, I felt a sensation,
Was someone else here, or just another hallucination?

Over by the chimney, carrying a walking stick,
Stood a man who looked very much like St. Nick.
Was I dreaming, was I awake, had I gone insane?
I wasn't sure, then he called all my symptoms by name;

"Now, TREMORS! now, FALLING! now, INSOMNIA and STIFFNESS!
Now, FOOT CRAMPS! Now DROOLING! Now, MASKING and SLOWNESS!
To the top of the porch! To the front lawn!
I am telling you, symptoms, from this girl be gone"

As a dust storm caused the leaves to fly,
I watched as my symptoms disappeared in the sky,
So up to the heavens my symptoms they flew,
And I knew I would have a good Christmas, too.  

Before I knew it, he had turned and fled,
And I, quite dazed, went back to bed.
But I heard him exclaim, as he drove out of sight,
"Merry Christmas to all, and to all a good night!"

You can find all my videos on my YouTube channel:

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

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!

The Writer's Club

Write on the Edge -Yuma, a local writer's group, meets every Tuesday afternoon at the Yuma Foothills branch library, which is near my home. I don't really consider myself a writer, I think of myself more as a storyteller. Is there a difference? I don't know, but I attend almost every Tuesday. The group is made up of various writers, some published, some still working on their "Great American Novel." Most write fiction, from Biblical Stories to Murder Mysteries to Paranormal Romances and everything in between, and a few write non-fiction, but not autobiographical like my stories. 

I am fascinated by their creativity and dedication to writing. Some write thousands of words a day, others are still editing stuff they wrote years ago. I only write when something happens that I find funny. Most of them are avid readers as well, which I am not. I grew up reading the Reader's Digest at breakfast and lunch and if I can't finish a story by the time my cereal bowl is empty, it's too long for me. I don't have the patience to read a book that will take me four days to finish, besides, I don't know where they find the time? I barely get done what I need to get done in a day.

YumaBev's book

I was looking for help in turning these stories into book form, and for that, they were invaluable. I enjoy their company and talking about something other than Parkinson's disease, so I keep coming back. When asked if I am going to write another book, I don't know what to say, since I try to add eight or nine stories to this blog every month. Plus I am trying to market, promote and sell the book I already wrote.

We usually do what is called a prompt each week. The idea is to write a story, in ten minutes, from a given starting line or idea. I use a laptop to write my stories, since even I cannot read my own scribble. Every story I write is humorous, I'm not sure I know how to do serious. I usually manage to finish my prompt in the ten minutes (I think it's the Reader's Digest thing again). Here are some of our prompts and the stories I composed for each.

Prompt 1. Write a story using the phrase "When I turned the corner"

When I turned the corner I was completely surprised by what I saw. Standing there, blocking my driveway, was a huge bull elk. He just stood there looking at my little Geo Storm, like it was a errant calf. He wasn't about to budge and I needed to get past. What was I to do? I know, I'll honk the horn. BEEP. Didn't faze him one bit. BEEP BEEP  Still nothing, so I inched closer. Nope, he wasn't moving. I got out of the car and waved my arms at him, shouting "shoo,"  but nothing, he wasn't budging. Then my cell phone rang, playing a loud rock song and he cocked his head for a minute and then took off running. Well, that's ironic I thought. Why? The song was Running Wild. I guess he was just waiting for some motivation. I went into the driveway, put the groceries away and thought how lucky I was to be spending the winter in Colorado. It's not everyday you go to a rock concert with an elk. Well, not a four legged one, anyways. 

Prompt 2. Write a story about waking up with magical powers


When I woke up at 5 am, I knew something was different. I didn't know what it was until I looked at the dull brown chair and thought, I really need to re-cover it. A nice floral print would be nice and poof the chair was now a pretty yellow floral print. I blinked my eyes and it really had changed. So, I looked around and thought about what else I would change. I didn't like the coffee table, and pictured a more modern style, but only the color changed, it was still old fashioned looking. Hmm, this could be interesting. I went into the bathroom and tried all different hair colors, but blonde looked best, red was fun but just made my face look redder. Then I redecorated the whole house; wouldn't hubby be surprised when he woke up. Those old green dishes, were now bright red. My car: zebra striped. I was having a great time. I changed the gray gravel yard to ocean blue, and made the desert sand bright white, then I painted big  puffy clouds in the sky. I now had ocean front property in Arizona. 

Prompt 3. Write a story using these words: ring, garden, magnifying glass and priest 

It was the morning of my wedding and things were hectic. The groom was late and I was panicking. Finally, the phone in the rectory rang and the priest appeared moments later with a smile on his face. He said, "Don't worry dear, your new husband is on the way. He was out in the garden at his Mother's house picking a fresh flower for a boutonniere when he sneezed and as he grabbed his handkerchief out of his pocket, he dropped your wedding ring. So there they were, the groom and his mother, crawling around on their knees with a magnifying glass looking for the ring. Well, they found it, got cleaned up and are on their way here."


As you can see, my stories generally tend toward humor, but what really amazes me is the completely different stories we compose using the same prompts. I guess we "writer's" all have very active imaginations.

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