Bragging Rights

I am so proud of my daughter! Yesterday, Sunday, she auditioned for the quiz show, Jeopardy. She and her husband drove to Detroit for the try-out, which was actually not her first! A couple of years ago, they drove to Lexington, KY, and a few years before that, she tried out for the College Tournament in Cleveland. She hasn't made it on to the show - yet. I suspect it's only a matter of time.

So the bragging continues. Read on.

A Bit of Bragging, 8/14/09

Please forgive me as I boast about my daughter just a bit. After a long time spent soul-searching, she’s going back to her first love. Teaching is all she’s ever wanted to do, but some bad experiences made her wonder if it was right for her. Time and distance, though, help. And today she accepted her first teaching position, at her old high school! I’m really proud of her.
 

Motion

As I was reading today's post, I was reminded of those famous, and infamous, people who suffer with Parkinson's disease. People like Janet Reno, Muhammad Ali, and Michael J. Fox. I think us young-onset Parkies relate well to Fox because, after all, he's going through what we are.

I just took my third dose of pills for the day, and I hope they kick in quickly, cause I ain't moving too well.

To Move or Not To … (You know the rest), 7/27/09

I’ve been reading Michael J Fox’s new book, Always Looking Up, and really enjoying it. I like his style of writing because I can relate to so much of what he says, and I also feel that he can relate to me without even knowing who I am. His description of the dyskinesias that shake his body, for example, is dead on. The opposite, bradykinesia, he again describes well. Being a self-proclaimed optimist, he chooses the dyskinesia over the bradykinesia; to move versus not moving. He relates the story of the commercial he shot for Claire McCaskill, the candidate running for Senate in Missouri, and how the dyskinesia was such a part of him that he didn’t even realize he was shaking. He also tells of his reaction to Rush Limbaugh’s comments after the commercial aired.
So why am I writing all this? As I said, I can relate to what he’s going through. One day, I won’t be able to move with any certainty that I’ll make it across the room on my feet. I took my pills, same time, same dose, but you wouldn’t know it. Then the next day, I can’t seem to hold still. I totally exhaust myself with wild flailing. So the question is (to paraphrase Shakespeare): to move or not to move. Whichever day I’m having, I’d gladly trade for a little of the other. For the most part, though, I’d have to pick moving over not moving. Does that make me an optimist? Not in and of itself. Especially when I’m shaking so much that I can’t manage to eat without making a mess. But moving is preferable to sitting like a lump in a chair, staring out the window because you can’t do anything else. Would you agree?

Mixed Blessings

Have you ever had a day when nothing seemed to go right? A day you just knew you should have stayed in bed? But before that day is over, something good happens that makes you realize there is justice and niceness in the world.

I remember this day despite it having been four years ago. Not all the little details like the young woman's name, but the bigger stuff like her help. Today, I probably could manage the climbing and turning required of a massage. Probably. But, even if I couldn't, the deeper message still remains.

A Day of Mixed Blessings, 7/13/09

Today I finally decided to take Ken up on his offer of a beauty spa treatment for my birthday. I know, it only took me 3 1/2 months to do it, but, hey, I was holding out hope that he would forget about it. He kept asking me when I was going to make an appointment, so I did.

This treatment was to consist of the following: being brushed all over to remove dead skin cells, then scrubbed from head to toes with a sugar and mango butter scrub, having that showered off, then off to the mud room to be covered with mud and a Mylar blanket, and finally to a half-hour massage. Sounds great, huh?

Well, thanks to my PD, I was only able to get as far as having the sugar washed off. Katie, my massage therapist, was very understanding of my disability, and did all she could to accommodate me. We decided, after showering the sugar off, that my trying to get onto the mud wrap table would be too difficult, and opted instead for a 60-minute massage. Faced with attempting to climb onto the massage table made me cringe, though, so we called it quits. Katie was good enough to go downstairs to the locker room to retrieve my clothes. Then, faced with the ultimate indignity, she had to dress me.

So it was a day of mixed feelings and blessings. On the one hand, I was disappointed at not being able to partake of the entire treatment, and really aggravated with this damned illness. But, on the other hand, I feel fortunate that there was a young lady who went out of her way to make the little time I spent with her enjoyable, and to make me realize, yet again, that there are angels among us.

4th of July

Seems appropriate that today's post be about the Fourth celebrations:

Happy July 4th, 7/4/09

I’m sitting at the computer musing about our nation’s birthday and the ways we celebrate it. For Ken and I, it’s just another day. I don’t do crowds or drive at night, and Ken hates loud noises, so fireworks are not really an option for us. I’m watching my neighbor trim the roses by the door and sweep off her driveway. Looks like a quiet day for her too. My daughter had hoped to go to Red, White and Boom in Columbus last night, but she wasn’t feeling well. She is going to a wedding today, for which she and I made a new dress last weekend. Now a wedding on the Fourth of July seems to be an excellent way to celebrate the day. (Not to mention ever forgetting one’s anniversary!) The rest of the neighborhood is quiet, for now. I suspect it won’t be for much longer. How did you mark America’s birth? Cook-out and beer with friends? Sparklers and bottle rockets? Whatever it was, I hope it was safe. Happy Birthday, America!

A Peaceful Oasis

I find it interesting that just two days ago, Ken (the guy I'm living with) was remembering the walk we took to Cataract Falls and said he wants to go again. That walk is the subject of today's post.

A New Discovery, 6/16/09

Ken and I went for a walk in one of the local metroparks last night, and discovered the tallest waterfall in Cuyahoga County. Cataract Falls is located on Mill Stream, which runs from the east side of Cleveland and eventually ends up in the Cuyahoga River (yes, the one that burned) and then Lake Erie. These falls are small by Niagara standards; they are 48 feet tall. But to find them on a summer evening, when there’s no one else around, in the middle of a busy city, was like finding our own little oasis.

Diagnosis

So, on this the second day of this undertaking, my post comes from June 15, 2009. Entitled "The Lesser of Four Evils," it details my diagnosis of Parkinson's disease. It's probably been 15 years now since I first started noticing symptoms. I feel blessed that I am still able to walk and talk and communicate with the world.

 The Lesser of Four Evils, 6/15/09

 

Why are you dragging your leg?” “Why are you limping?” “I can’t read your writing. Is something wrong with your hand?” I was asked these questions and many others more frequently as time sped onward toward the end of the 20th century. Most of them came from the residents and staff at the nursing homes where I worked. Some came from friends, others from family, especially my mother-in-law. She had Parkinson’s and she was convinced that I did too, based on my symptoms which were similar to her early ones.

I found that I had increasing difficulty taking care of my residents, having to do things with my left hand instead of my dominant right one. My handwriting was becoming illegible, looking more like chicken scratch. Finally admitting that something wasn’t right, I went to my doctor. Thus began a 2-year journey to find out what was wrong with me.

I had x-rays done, I went to a doctor of physical medicine, and I had an MRI done. Finally I ended up in the office of a neurologist in February of 1999, one month before my 40th birthday. He said, “It’s rare that we find Parkinson’s in someone so young. It could be worse: you could have had a stroke, you could have a brain tumor, or you could have MS. If you had to have any of these four, Parkinson’s would be the lesser of four evils.”

Once the shock and the anger wore off, I began to accept that I had an incurable illness that would slowly rob me of my independence. I began searching the internet for information about PD, and soon discovered a whole new world of others who were coping with the same thing. I became a regular in the chat rooms, trading stories and tips with fellow “Parkies.” I attended a symposium in Canton, OH and became hooked on the opportunity to meet them in person. I have been to Canton twice, as well as Albuquerque and Chicago, and value the friendships made.

Sadly, my Parkinson’s took its toll on my marriage, and I was divorced at the end of 2003. I moved back to my hometown of Cleveland, where I now live with a wonderful man who has taken on the role of caregiver for me. I don’t know some days how I would get along without him.

Medications were effective in controlling my symptoms for several years. I was soon stuck between being too “on” with wild dyskinesia, or too “off” with bradykinesia, freezing, and balance issues. In July 2006, I had bilateral Deep Brain Stimulation, and it has changed my life significantly for the better. I feel like I’ve gotten back the past four years that PD has taken from me. I danced at my daughter’s wedding, and look forward to holding grandchildren without fear of dropping them.

There is a song by the country group Sugarland that I have adopted as my personal anthem. “Stand Back Up” says just what I feel:
You’ll know just the moment when I’ve had enough.
Sometimes I’m afraid and I don’t feel that tough,
But I’ll stand back up.