Tuesday afternoon was a complete blur. I babysat the girls until 3:10 P.M. (not that I was watching the clock), sped home (not my usual "grandma" driving), and sent the hubby out to gas up the car, while I jumped in the shower and dressed. I was ready in a record time of 35 minutes. I didn't want to be late, not for this event, and the thought of having to drive the 405 freeway during commute hours had me completely frazzled.
The hubby graciously put the pedal to the metal and before we knew it we were in Beverly Hills, pulling up to the valet at the beautiful Montage Hotel. As one of the attendants helped me out of the car, the hubby and a second attendant went to the open tailgate of our vehicle. I looked on completely confused as the hubby pulled out his overnight bag that just so happened to have our kitchen cutting board protruding from it. "What are you doing?" I was mortified at first, and then ask, "Are we staying the night?" Of course, the answer was yes; he didn't want me to miss American Idol. My heart melted.
Standing just inside the hotel entry, a very polished looking young man offers a warm welcome (by name) and escorts us directly to our room. The room was amazing, beautiful in design and very spacious. With no time to waste, we were off to the hotel bar for a glass of wine. I have to be honest, I needed something to calm my nerves. I was a wreck, and anyone with Parkinson's knows that the symptoms of the disease increase during stressful moments.
Next we were off to the meeting. Michael J. Fox gave the opening speech, and he was followed by two of the Foundation's key members and a panel of physicians with expertise in the field of Parkinson's Disease research and treatment. Here's what I gleaned from the meeting:
- Parkinson's Disease research is suffering due to a lack of enrollment of patients in clinical trials. The economy has affected this area greatly as most people do not have the time nor money to commit to the programs.
- I do not qualify for the recently funded 40 million dollar Biomarkers clinical trial. (This news was devastating to me.)
- There is great frustration amongst the Parkinson's community, both patients and caretakers. In some cases, a cure is needed now.
- PD patients are friendly. I met a man who runs marathons, and he's been dealing with PD since '83. (The hubby and I will meet up with him in July at the San Francisco Marathon.)
- Young patients (43 is considered young in PD terms) like me are rare. I met a couple of ladies in their mid 50's, one of which lives in So Cal. We are planning a date together.
After the meeting concluded, the panelists made themselves available for one-on-one time. The hubby took the opportunity to ask a few questions, and I love him for that. I, on the other hand, chose to speak with a few patients and exchange personal and treatment information. Then we were off to our room to watch Idol.
The hubby prepared cheese, fruit, and crackers and together we ate and watched Crystal and Lee's final performances. What a romantic my hubby is!
I went to the meeting feeling very optimistic about PD research and possibly a cure, and I left feeling a little sad after hearing about and personally witnessing the effects of the disease. It's a horrible disease, and I wouldn't be human if I didn't feel a little fear.
I want to thank everyone for their support and I hope you'll hang in there with me even when my smile fades here and there. To my hubby, thank you for attending the meeting with me, thank you for the hotel stay and Idol, but most of all, thank you for your dedication and love. I'm not sure where I would be without you.
kj
