A note from my mom:

While Parkinson's has obviously had a tremendous effect on my dad's life, it has also impacted all of our lives individually and life as a family.  The things that most people would do without thinking twice -- walking around at the mall, dialing on a cell phone, flying a kite with a grandchild, taking an airplane trip -- are things that people with advanced Parkinson's either do with great difficulty or don't do at all.  

My mom has been the person there for my dad, making it possible for him to continue to do all of the many things he loves to do.  When I asked her to write a few paragraphs for this project, she got back to me a few days later and said that she was working on something with a positive spin.  I'm sure most people - Michael J. Fox excepted - would have a hard time putting a positive spin on Parkinson's Disease, but I admire my mom's spirit.  And, I agree with her that HAPS has been an incredible support network for my dad and for so many others struggling to stay physically active and independent.

Here are my mom's thoughts, in her words:

"The first clue I had that Aubrey had a problem, in 1982, was that he carried one arm rigidly at his side, instead of swinging it when he walked. “Don’t carry your arm like that, try to look normal,” I said.  When he was diagnosed with Parkinson’s Disease later that year, at the age of 42, he was told he would probably be able to work only another five years, and live another ten.  Now, twenty-seven years, two brain surgeries, and several improvements of medication later, he has thankfully outlived that prediction.

I credit Aubrey’s doctors at Baylor College of Medicine and the VA in Houston, the Houston Area Parkinson’s Society, and Aubrey’s spirit of never wanting to give up for his success in holding back the effects of this debilitating  disease.  After several years of not being bothered much by his symptoms, Aubrey entered into the many programs HAPS offers free of charge around town.  He currently takes water therapy, land exercises, speech therapy, and Tai Chi.  The exercise not only keeps him moving, but the support of the instructors and other people in the classes has been extremely beneficial.  HAPS provides transportation to the classes for anyone who needs it."*

*One of the major issues that we have struggled with as a family is driving.  Many Parkinsonians are excellent drivers (my dad believes he is the best driver in the family, and he may be right), but we no longer feel it is safe for him to drive.  We worry that he will fall somewhere while he is alone, or be attacked by someone who perceives that he is an easy mark, or any number of other scenarios that are of concern.  He does not think that any of these are good enough reasons for him to quit driving, and we've had more than a few go-rounds with him over it.

Giving up driving has been very hard on my dad, as he rightly feels that he has lost much of his independence.  It has also been hard on my mother, who spends a large part of every day behind the wheel of her car - driving to her office, driving home to take my dad somewhere, driving back to the office, back to pick up my dad, back to the house, and so on, and so on.  Any of you familiar with Houston know that this is no easy task, as traffic conditions around Houston vary from terrible to absolutely make you want to tear your hair out.  Hopefully, one of these days we can convince my dad to avail himself of HAPS' wonderful transportation service, but until then, we are glad that it's there for those who do need it.  

Matt weighs in ...

I don't like to run.  I am not very good at it.  About 6 months ago Claire talked me into running the Nashville half marathon.  It was very uncomfortable.  At one point I was passed by a gentleman who was running backwards while juggling.  The juggler was followed closely by a man in a bear costume.  I was a little disgusted with my performance and it planted the seed to run the Houston marathon (we tried to sign up for the half but it was full).

During medical school we often referred to a patient's battle with certain diseases as a marathon.  With Parkinson's I think this analogy is very fitting.  In my training thus far the most I have run is 13 miles.  The idea of running twice that fills me with a little despair.  The next 13 will be that much harder.  As I have watched Aubrey battle with Parkinson's over the years I know that he knows that there are harder challenges to come.  The relatively little bit of will power that it will take Claire and I to quiet the despair and plow through this race,  I think is probably similar to the will power that Aubrey has to employ each day to do things that he wants and needs to do.

I hope that running this race and Claire making this blog helps to raise awareness of what is, in my opinion, one of the most difficult diseases out there.

I hope that I run faster than the guy in the bear suit.

Halfway there ... sort of

We ran 13 miles this weekend, and it really hurt.  It was a perfect day for running -- sunny, cool, no humidity.  Our friend Paige ran about 5 miles with us, and then we did the rest of it on our own in about 2 hours and 15 minutes.  There was definitely a little walking in there towards the end, but overall I'm proud of us.  I have read on the Houston Marathon website that if you are not on pace to finish the marathon in 6 hours by the half-way point, they divert you to the half-marathon course.  I can't decide whether that would be terribly embarrassing or really good luck.  Probably both, but I'm hoping it won't befall us.  Plus, the idea of running for 6 hours is really awful.  Next time you are doing something like watching a movie or driving a long way, imagine that you were just running the whole time.  Plus a few hours.  So, we're hoping to finish in 4:30 - 5 hours, but we'll see.

After we finished, we had to rush home, shower and get ready to go over to a friend's house for dinner with the kids, and both of us were sort of out of it for a while once we sat down on their couch and everything caught up with us.  At one point, I was positive that I was going to throw up all over the coffee table.  This was my body's way of saying, "I really did not like that."  My response to that subtle message was to eat a huge, delicious dinner, and I think my body was slightly mollified by that, but it's definitely still holding a bit of a grudge.

So we'll keep at it this week and then have a "rebuilding" weekend next weekend where we only run 8 or 10 miles.  But I can see a 20 mile run in the near future, and it's been stalking me in my dreams.

A note from my dad:

As I mentioned in my first post, my dad has been living with Parkinson's since he was 40, and now, at almost 70, he is remarkable strong and functional considering the length of time he's been dealing with it.  Parkinson's is a degenerative disease, so each day and each passing year bring about new difficulties and take away a little more independence from the sufferer.  For the last 30 years, I can attest that my father has fought tooth and nail for every inch of ground he's given up to Parkinson's.  He is nothing if not stubborn, and that has served him well in this situation, even though it sometimes makes him a pain in the butt for the rest of us!

When I started this fundraising blog, I asked my family member each to write something about their experience living with Parkinson's, so that for those of you who happily are not afflicted or aren't closely related to someone who is, you can get a picture of the life of a Parkinsonian.  My father sent me an email in response which I'll share in part here:

12 Weeks and Counting!

Today marks 12 weeks to go until the big race!  We are a little behind in our training program since we had to take a few weeks off for various reasons, but today we are heading back out for our first long run in a while.  It is raining, cold, the day after Halloween, and we are both wishing we could just lay on the couch and watch a movie (me) or Eagles football (Matt), but when the babysitter gets here at 4, we're doing it.  Ten miles today, then 14 next weekend - yikes!  At least I can put Halloween candy in my pocket for a little pick-me-up along the route.
Thanks for your support!
Claire