It’s been a busy couple of months since I last wrote. In my zeal to keep moving and to stay busy, I may have overdone it slightly in the past few weeks. Since February, I’ve been to Washington DC twice, Buenos Aires once, and to Austin and New Braunfels more times than I can count. I tire easily and I fall occasionally, but at least I’m falling forward.
I was very fortunate to be part of a group of new friends and colleagues in Washington, DC at the end of February, as part of the Parkinson’s Action Network (PAN) Annual Summit. We visited with United States senators and members of Congress to discuss legislative support for Parkinson’s research initiatives, as well as to tell our stories about living with Parkinson’s. Although it’s a tough time for spending increases of any kind on Capitol Hill, we were warmly welcomed, treated with genuine courtesy and respect, and given the chance to speak about several important issues. This year, many representatives from the biomedical research community around the nation joined us on Capitol Hill to help our legislators understand how important these programs are from the perspective of both the researchers who do the work and the patients who benefit from it. I think we did good work together this year, and once again I’m deeply grateful to Amy Comstock Ricks and her wonderful team at PAN who all work tirelessly for the entire year to make the summit as successful as it is. It’s only one of about 1000 things they do during the year, but it’s an important one.
I was also fortunate to be able to travel to Buenos Aires, Argentina with my brother in March. I had no real driving need to go to Buenos Aires, especially since it lies at the far end of a 10-hour plane flight from San Antonio, but I’ll take any opportunity to go someplace with my brother. In the last few years, he’s been kind enough to take me with him to Daytona Beach to see the Daytona 500 (a truly awesome experience in many ways, and well worth doing at least once), Maui, and Istanbul. This coming fall, he promises to take me to Paris, and I’ve promised my wife (who is a French teacher and a lover of world travel also) that I absolutely will not have a good time, I will speak no French, I will eat no good food, and that I will frown and mumble “I hate it here” the whole time. She finally agreed to the trip, but she wants pictures that document my unhappiness.
We had a great time in BA, although I think my brother and I could have a great time stranded in a swamp surrounded by alligators; before very long, he’d have the alligators sitting around a campfire listening to stories about his family and his new race car.
We took a cooking class, where it turned out that my job was to chop onions. This required more than just a little concentration on my part, since no one else in the class was really all that eager to find a finger in one of their empanadas. All of my fingers are still accounted for, so I can’t be blamed. The meal turned out well, and I even managed to flip a crêpe without sticking it to the ceiling.
I have to say, though, that the highlight of the trip occurred on the 1st day we were there. After traveling for roughly 24 hours, we arrived at the hotel, settled into the room, and then had to choose whether we would rest for the afternoon or look for something to do. I was under strict instructions from my beloved wife not to overdo it, so I meekly suggested to my brother that we just hang around the hotel and get some rest. He said, “well, yes, we could do that. OR, we could go see if we could find a car race or a soccer game. I’ll call the concierge. Don’t whine; you can rest on the bus.”
We settled on the soccer game. Citizen of the world that I am, I had heard a vague rumor that soccer was somewhat important to the citizens of Argentina, in the same way that breathing is important to some people. It turns out that I was wrong; soccer is vastly more important than breathing to Argentinians. The hotel concierge arranged for a guide to pick us up and take us, along with a group of other tourists from local hotels, to a soccer match between two local teams: San Lorenzo and Boca Junior.
For this particular game, San Lorenzo turned out to be the home team, even though Boca Junior has an international reputation as an excellent soccer club. As we drove to the game, which was being held in a stadium seating 40,000 in the San Lorenzo neighborhood of Buenos Aires, our guide began to explain the situation to us.
“I was able to obtain tickets for us in the San Lorenzo portion of the stadium. So, today you are San Lorenzo fans. You may have heard of Boca Junior before, but please remember: today you cheer for San Lorenzo.” Foolish Americans that we were, we laughed and made jokes. In serious tones, our guide re-emphasized how we were to behave.
“No, you must understand. I am serious –if you forget and cheer for Boca Junior, it would be bad.” At this point, we asked for more specifics about the definition of “bad” in this context.
“Well, you would perhaps be severely beaten. You might be thrown from the stands. You would certainly be verbally abused and asked to leave the game. And it is possible that we would have to call your embassy and have them come to identify your body.” Ahh, so THAT’s what bad means. Well, that settles it; today I support San Lorenzo.
We arrived at the game and filed into the stadium along with 36,000 of my new closest friends. I whispered to my brother, “how do you say, ‘ I love San Lorenzo” in Spanish?” He whispered back, ” I think it’s best if you just don’t speak. And, try not to look anybody in the eye.”
The “San Lorenzo section” of the stadium turned out to be almost the entire stadium. The Boca Junior fans were brought in under heavy guard to sit in a 4000 seat section that was completely separate from the rest of the stadium, and surrounded by police in full riot gear. As both sets of fans settled in, the noise level began to rise in the stadium, and it just kept rising. For the entire game, the San Lorenzo fans shouted, stomped, and hurled insults at the opposing team like University of Texas Longhorns do in Memorial Stadium immediately after scoring one of our many touchdowns against the Texas Aggies (that is, back in the day before the Aggies ran away to another conference). The difference was that San Lorenzo didn’t let up for the entire 2 hours of the game. They were tireless and completely focused.
As the game started, the fans lit smoke bombs in the stands , filled the air with confetti, and unrolled banners that covered entire stadium sections. It seemed as if they had practiced at being good fans as hard as their team had at being good soccer players. It seemed important to try to blend in, so we began to sing in Spanish, make gestures, and shout things without having any idea what we were saying. I’ve lived in San Antonio for 18 years, so I had a vague notion that I was not being complimentary of Boca Junior, but since there were 4000 of them and 36,000 of us, I felt safe.
I love a good soccer game, but this was unprecedented. The sheer energy, the intensity of the fans, and the skill of the teams made this the best soccer game I’d ever seen. We must have done a good job of protective coloration, because we lived through the experience, even though San Lorenzo lost 2 to 0. We even started to feel a little bit at home as we waited for the required 30 minutes after the game was over, so that the Boca Junior fans could escape without being molested.
I enjoyed the rest of the trip just as much, although I may never eat beef again. There just doesn’t seem to be much point in it after having had a steak in an Argentinian restaurant. They’re almost as serious about beef as they are about soccer.
I eventually made it back home, and after a brief rest headed back to DC with my wife and our CyberPatriot team. That’s a story for another time, but for now suffice it to say that I’m very proud of the MacArthur High School AJROTC Cobalt Crusaders and their 7th place finish in the national finals of the CyberPatriot competition. They started with no experience and no knowledge, and in 6 months they built themselves into contenders in a national cyber security competition out of an initial field of over 1000 teams. I’m very grateful to my wife for creating this opportunity for me to mentor these kids.
On a more sober note, I just completed assessments for speech therapy and another round of physical therapy, and the therapists have recommended occupational therapy as well. According to them, my PD has progressed somewhat since my last set of assessments. That’s the way this thing works, of course, but I keep foolishly hoping that I’ll be the one guy for which this is not a progressive disease. The DBS has done a great job for me; I know it’s not for everyone, but my experience has made me an advocate for the procedure. I’m taking less of the medications that cause my most severe side effects; no more little furry creatures running around at night, and a good solid 5 to 6 hours of sleep every night and sometimes even more. I’ve even come to realize that having 14 helicopters is probably not necessary (they’re on eBay if you want one). But, my speech is starting to be affected, I’m beginning to have difficulty swallowing, and I fall more often than any of the therapists are comfortable with. I still have a long way to go, but this is not a plateau. It’s not surprising, but I find it makes me sad.
On balance, however, life is good. I have a wonderful family, meaningful volunteer work to do, and I’m renewing relationships with old friends and making new ones with whom I’m finding a true sense of joy. I honestly never thought I would miss working, but I do. However, between volunteering as a Parkinson’s advocate and helping to teach the CyberPatriot team, I have more to do than I honestly have the energy for. I still count myself fortunate.
There are many who are less fortunate, though. April is Parkinson’s Awareness Month, and this past month has been a time to consider all of those with PD who don’t have enough of any of the things they need, as well as the special burdens and challenges of Parkinson’s care partners. People with Parkinson’s, like others with chronic, incurable diseases, don’t have it easy by any stretch of the imagination, but at least we’re usually acknowledged as the ones who need support. Care partners of those who are chronically ill with diseases like PD, Huntington’s disease, Alzheimer’s disease, ALS, multiple sclerosis, muscular dystrophy, cerebral palsy, Fragile X syndrome, and all of the other diseases that are currently incurable and that require significant care often don’t get the support they need. To make matters worse, they’re often burdened with a sense of guilt for even thinking they might need help too. As a result, caregivers commonly experience burnout, develop health problems of their own, and experience every bit as much a reduction in quality of life as those for whom they provide care.
As Parkinson’s Awareness Month comes to a close, please take the time to support the care partners of those of us with PD and other chronic diseases. A kind word, a day of respite, an acknowledgement that they’re hurting, too – all of these help lessen the toll PD takes not only on PWPs, but on the people who love us and care for us every day.