Sunday, September 27, 2009

Just Okay

I remember what I used to say
When someone asked "How are you today?"
I used to shrug and say "okay"
That's all I had to say; "okay"

And now that I am not okay,
When someone asks "how are you today?"
I smile and say "Doing GREAT today!"
"And thanks for asking, by the way"
Because I know that one fine day,
I'll wish I had today's "okay"

I guess what I really mean to say,
Is there's no such thing as "just okay".

So, how is everyone today?

Sunday, September 20, 2009

A Dubious Anniversary

Three years ago today I sat in the neurologist's office holding my husband's hand and receiving the news that I had Parkinson's Disease. It was surrealistic; we talked calmly about treatment options and disease progression and symptoms, and all the while a little voice in my head was screaming "You've got to be kidding me!". On the one hand, I was a little relieved to know what was wrong with me, and to know that it was most likely not something more serious, like ALS or a Parkinson's Plus syndrome or something like that. On the other hand, I felt that my future had been suddenly taken away from me. I always pictured myself growing old gracefully; staying active and strong, enjoying life with my husband, learning new things. I thought I would be one of those people that others look at and say "I can't believe she's 80!". Now, I suppose that in ten years or so, people will look at me and say "I can't believe she's only 60!".

The thing is, though, that the future was always uncertain. Nothing has changed. To think that you know what your future holds is just self-deception. Since I've realized that, I look forward to the future again, but I also enjoy the present maybe just a little bit more...

Friday, September 18, 2009

To Medicate or Not to Medicate; That is the Question

When I was first diagnosed with Parkinson's, my neurologist and I discussed the various medication options. To my surprise, one of the options was no medication at all. That hadn't occurred to me. Why would you NOT want medication for a condition that was interfering with your life? Well, I've since discovered that some people (and some doctors) feel that the first 5 or 6 years that you're on medication are considered the "honeymoon" years, when the drugs work really well. They feel that you might want to wait until your symptoms are severe before you start this "honeymoon" period, and not waste it when you're feeling relatively well. Also, the sooner you take levadopa (which pretty much all PD patients will eventually), the sooner you will experience side effects like dyskinesias; those uncontrollable writhing motions that we've all seen Michael J. Fox and others exhibit.

I've thought about this a lot, and I know it's a very individual decision, and there are pros and cons either way, but personally, I am SOOO glad I opted to get medication right away. After all, what am I saving the experience of feeling better for; a rainy day? It's raining NOW. Why wait until I'm older and less capable of doing the things I want to do anyway? Why not NOW? Maybe I'll end up with dyskinesias a few years earlier, but who cares? Right now, I'm working full time, I walk every day, I take ballroom dancing lessons every week, and I was able to dance until past midnight at my brother's wedding. I'm more fit than I have been in ten years or so, and I feel better than I have in at least 5 years. For me, it was the right decision. We put things off and say to ourselves "Someday, I'm going to.....". Then we run out of "somedays".

Wednesday, September 2, 2009

What a wonderful world...


I just got back from NY after the most wonderful wedding. I think that's the most fun I've ever had at a wedding, including my own! Beautiful ceremony, smiles and tears of joy, lovely music, great food, lots of dancing; what more could one wish for? But the best part was to see my brother standing there under the canopy with his beautiful bride, wearing the happiest expression I've ever seen on his face. I was trying to hard not to cry during the ceremony, and what happens? My calm and phlegmatic brother starts crying while saying his vows!


Drew and Debra at their wedding rehearsal dinner at a really cool Brazilian restaurant in NYC

I was very pleasantly surprised, too, to find that I was not only able to stay up past midnight, but also to dance almost every other song! I really didn't think I could do it, but I just gave it a shot, and it turns out I could. I'm still paying for it with aches and pains, but it was SOOO worth it!

During the week, we also got a chance to visit with friends and family, some of whom I haven't seen in... forever. In fact, my cousin Elaine was there, and I don't think I've seen her since we were both kids. Yes, that was a LONG time ago, but let's not go there... I also got to visit with my aunt and uncle (fun and fascinating people; my aunt is a successful artist and art teacher and a real hoot as well), and my other cousin and his family (he has a 13 year old daughter who's taller than me!). I was reminded of what an extraordinary family I am part of, and I'm so happy that we're now part of another incredible family, too. What a combination!


Drew and Debra at the wedding reception.


My Dad and Bob try on their tuxedos

About Me

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I'm a lucky lady. I have a wonderful husband of 27 years, a fantastic 25 year old son (I'm so proud of him!) a loving and supportive family, the best friends in the world, a job that I love, and... Parkinson's Disease. I was diagnosed in September 2006. That was a jolt, but I'm learning to deal with it.