Team Parkinson®

July in San Francisco…an odd combination of foggy, cool mornings, and occasional warm afternoons, interspersed between the cold, damp, and sometimes windy days they call summer here in the city. All in all, it’s a good time for a marathon in the city by the bay. Team Parkinson has been participating in a major running event in the city for seven years now, beginning with the US Half marathon in 2003, later transitioning to the San Francisco Marathon in 2005. Our longevity there is entirely due to the commitment of Jennifer Bugnatto and her family to honor the memory of Jennifer’s father, George Bugnatto, who died due to complications of Parkinson’s disease. Jennifer is a runner, normally preferring the ½ marathon, but this year she is recovering from a foot injury that has prevented her from training. Though she was unable to race this year, she managed to put together a truly memorable weekend for the rest of the team.
The weekend started for Edna and I when we left Whittier on Thursday morning and drove the not-so-scenic route I- 5 through the hot Central Valley of California to Tracy where the freeway splits. There you must make a choice to go either west to San Francisco or northeast to Sacramento. The difference between the two is staggering. We went west, of course, toward the afternoon sun which shone bright and clear all the way to Treasure Island, which divides the two segments of the Bay Bridge between Oakland and San Francisco, at which point we disappeared into the fog-shrouded local eco-system known as THE CITY.
Edna and I feel very comfortable in the city. Our two kids both went to college here, David to San Francisco State, and Sarah to the San Francisco Art Institute. Fortunately we were able to attend both of their graduation ceremonies. I’ve been visiting the city since my own college days, back in the 1960s – a brief, but magical time in the long history of this place – and, yes, I’m talking about Haight-Ashbury, and Stanyon Street, and all those other sorrows. And one of our favorite artists, one we’ve actually collected a few pieces from, still lives here in Pacific Heights. So let me repeat myself—we love it here. We love both the setting and the people we get to be with. I’m not sure what all the subtle differences might be, but our team in San Francisco has a different feel from our team in LA. Perhaps the difference is as simple as the fact that Jennifer does most of the work to get ready for the event in San Francisco, while in LA the bulk of the work falls to Edna and I help out as I can. All I’m really called on for in SF is to set-up at the Expo, give a brief speech at dinner and run a race on Sunday morning. It doesn’t even seem to matter which race I run, since I’ve done everything from walking the 5K to running the full marathon and I have found pleasure in each. Last year I ran the marathon in a solo effort since my regular training partners were all injured at the time, and I surprised myself with my fourth best time in the marathon, a 4:23:22. Now that I have turned 65, I was hoping that a similar time might put me near the front of my age group. But each marathon is different, and each has its own set of conditions.
One of the things that Edna and I love about the city is the food. There are an endless number of high quality restaurants to choose from and Team Parkinson will eventually sample them all unless we can stop this routine by finding a cure for PD. Thursday evening we ate dinner with Carol Walton at a terrific spot called the Waterfront, a seafood establishment on the Embarcadero. Carol is CEO of The Parkinson Alliance, our parent organization, and is, therefore, our boss, but acts more like a social director and gourmet tour guide. Thank goodness her tastes are impeccable. Dinner was nearly perfect, with just one small delay in serving Carol’s entrée. The waiter tried to fill the delay with a special appetizer for her, but the maitre d’ had already treated us to the same shrimp on a biscuit. Had her delayed crab cakes not been so good, she might have been a little “crabby.”
The next morning, Carol, Edna and I had breakfast at the hotel and then we set off to set up the Team Parkinson booth at the expo. It was at a new location this year. In fact, it has been at a new location each and every year. I hope they can find a permanent location that meets everyone’s needs. This one was a little too crowded. The traffic felt dense for most of the two days, particularly since we were right next to the Sobe booth where they were giving away free drinks. Their crowds kind of overshadowed us. By mid-day on Friday I was feeling beat, and Carol and Edna sent me back to the hotel to get some rest. It was a good idea, and the walk back to the hotel kind of cleared my head a little. By the time they came back to get me for dinner, I was pretty much recovered. It was a good thing I was rested, because dinner was once again formidable. This time the venue was an Italian restaurant called Chiaro Scuro, which may mean something, but even after two years of Italian lessons in grad school, I am helpless to translate. The food, however, needs no translation. It was fabulous, as was the service!
The next morning after an enormous buffet at the hotel (I could have eaten less, of course) we returned to the expo, where we once again greeted old friends and made some new ones for Team Parkinson. The day went by fairly quickly, and after we had wrapped up the expo, broken down the booth, and packed everything away in the minivan, we headed off to the South Beach Café for our Carbo-load dinner. Once again we feasted on fabulous food, received marvelous service, and listened to some truly top-notch speakers on the state of Parkinson’s research in America. Carol Walton presented information about a significant consensus conference on Deep Brain Stimulation, and Dr. Bill Langston, head of the Parkinson’s Institute in Sunnyvale, gave us a terrific review of the week’s big breakthroughs in PD research. And believe me, they were significant! We touched on stem cells, the genetics of PD, and the scientific confirmation that exposure to Agent Orange has a high correlation with congestive heart failure and Parkinson’s disease…I could have told you that 30 years ago. Mercifully, I kept my remarks briefer than normal. The total evening proved to be upbeat and tasty.
Sunday morning arrived earlier than I would have liked, but I was up before 5 AM in order to get my medication flowing through my body for a 6:30 start time. Mark Saxonberg, my faithful running companion, met me right on time and we headed off to a comfortable start in the sixth wave of the marathon. This is the only place I know that uses the wave technique, where runners are grouped by predicted finish time and started at 10 minute intervals. I think it’s necessitated by the narrow traffic corridor available to and from over the Golden Gate Bridge. Without the spacing, runners would be running head-on into each other with no place to go.
Mark and I left precisely at 6:30, an hour after the elite runners had departed, and the race leaders were nearly 10 miles into the race by the time we even got onto the bridge. It was a little cooler up on the bridge in the fog, and with the traffic so dense, I just pushed ahead as fast as I could muster without our usual walk breaks. That lasted nearly to mile 10, and then I knew I was not going to get anywhere near a PR or a Boston qualifier. My body temperature was too high and I was sweating heavily…so I had to slow the pace. Mark did his best to pull me for the next 16.2 miles, but it was a futile effort, because my body was basically maxed-out. I simply hadn’t trained hard enough to go any faster. Still, after all was said and done, it was a good race and a steady pace, just under 11 minutes per mile, finishing in 4:46.
The other other Team Parkinson athletes did splendidly, including some really strong performances from Greg Hallahan, Dr. Susie Ho, and Ken Reichel in the marathon; and from Frank Markowitz and Kurt Fielder in the half-marathon. Special recognition needs to go to Ruth Gimple, Carol Walton, Lyle and Dewey Richardson, Susan Saxonberg and Edna Ball for their gutsy performance in the 2nd half-marathon! This was a first time effort for most of them. They now know what it feels like to sweep through the Team Parkinson cheering station near the end of a long, sustained race, complete with high-fives all around. I wish I could name every participant in the weekend for Team Parkinson, but there were nearly 100 people involved, who together raised over $50,000 for Parkinson’s research.
We wrapped up the weekend’s activities with one more fabulous dinner at a Peruvian restaurant on the Embarcadero. We swapped race stories and made plans for next year while enjoying a seafood dish called “ceviche”. I tell you, San Francisco is the place to go if you really want a great gourmet experience, or if you are looking for a place to race for a good cause and enjoy the company of very special friends.

Well, it’s Wednesday July 1st, and I’m going to run this morning – one of my mid-week 3-5 mile runs in the hills of Whittier. Last Sunday, Doug MacGlashan and I ran 13 miles, or at least we completed the distance, although neither of us ran the whole time. I was just slow and tired after the half-way point, and Doug ran out of gas somewhere around the 8 mile mark. We both struggled in the heat, so we walked far more of the workout than we normally would. Even though it was slower than planned, and we didn’t feel good afterward, I’d have to call the workout a success because it stretched us beyond our previous recent distances.
It’s now just 25 days to the San Francisco marathon and I have to decide if I need a really long run next weekend, or if I’d be better off with something shorter, faster, and less punishing. I’ll have to talk to Mark and Doug about that.
I haven’t been actively trying to raise money for this race because it follows the LA marathon so closely, but if you didn’t make a contribution during the LA campaign, now would be a good time. I’ve added my name to the list of runners representing Team Parkinson in the San Francisco Marathon. Check it out here on our website.
(I never got around to posting that message; but rather than delete it, I’ll simply include it as part of this update.)
It’s now July 7th, and we are closing in on the upcoming race. I’ve got less than 3 weeks to get ready. Last Sunday, Mark, Doug and I ran in Palos Verdes, and for the first time in a few workouts, I was able to keep them in sight throughout the 15-mile run. I didn’t quite stay up with them, but I didn’t drop so far back that I could no longer see them up ahead. I guess at 65, with Mark nearly 10 years younger, and Doug closer to 20 years younger, I’ll be lucky in the future just to keep them in sight. The best part of the run was that it was a run from start to finish. I took my regular walk breaks, but I didn’t break down and walk when I should have been running. Now I’ve got to extend that capability for another 5 miles on my next long run, and then I’ll feel ready for the marathon.
I’ve been trying to find additional ways to support the Parkinson’s community, and today I got a call from Dr. Abe Lieberman asking if I’d be available to speak on a Parkinson’s cruise to the Caribbean next February. I said, “I think I can do that.” I do hope it works out. I was able to participate on a Parkinson’s cruise to Alaska a couple of years ago and loved it. In any case, this time I’m not going without Edna.
I’m going to get back to work on some wood projects in the garage, and see if I can get my son David excited about learning how to turn wooden bowls on the lathe. He’s working on one now, but I want to make sure I set the hook deep enough to reel him in.
I’m aiming for at least one more post before race weekend, so stay tuned, and check the website when you get a chance.
John

I’ve been in training for the San Francisco Marathon for months now, years actually, because I try to run at last two to three marathons a year, so I don’t have to work my up from the bottom each time I want to take on another race. 

My last big race was on June 6th in Norway, at the Norwegian Mountain Marathon.  I ran the  half-marathon with my friend Roar Eikenes, who I  first met at the San Francisco Marathon in 2006.  Roar has had Parkinson’s for about ten years and has finished more than 50 marathons, ten of them after his diagnosis.  I ran hard and finished in about 2 hours. 

Now I’ve got to start cranking up  my mileage and my speed both if I’m going to try to match or better last year’s race in San Francisco.  My time last year was 4:23.22, just 8 minutes over a Boston  qualifying time.  So if I can knock just 30 seconds per mile off last year’s effort, I’ll have a qualifier…without needing the “charity exemption.”  Today, however, wasn’t a good start. I pulled a muscle in my thigh and it was painful just walking the dog., so no run today.  I’ll give it another day tomorrow and see if it gets better on its own.  Til next time, see ya.

John

So . . . my journey ended with neither bang nor wimper, but with splash and stagger.   Marathon Day dawned cool and gray, perfect running weather – until it started to rain.  And then it rained a little bit harder.     And then a bit harder still.   And . . . well, you get the picture.

If I’m going to be honest with myself (and I am), I didn’t enjoy  the half-marathon at all.   It was probably the hardest run I’ve ever had, and not in a good way!   But two parts of the race were terrific.  The first came  moments  before the start, when a drizzle turned torrential, and the shivering mass of several thousand runners (clad in trash bags, which make excellent temporary, disposable raincoatsd) huddled together waiting to run broke into  impropmtu song: the Star Spangled  Banner.  The second came at the finish, when I saw my friend Geoff cheering me on, and then my wife and kids  doing likewise.  Everything in between those two moments — i.e., the race itself — was pretty miserable.

I don’t really want to dwell on the misery stuff.  Suffice it to say that I was still sick — sick en0ugh to affect my breathing – and probably shouldn’t have been running; I was never able to get warm; I had no energy because I didn’t bring any snacks (i.e., Cliff Blocks, gel, Gu, whatever); and my leg muscles started cramping at about the fifth mile, and didn’t really let up.  I stopped to walk several times, and was very tempted to just quit, but I stubbornly persevered.

So those are all of my excuses for my final time — 2:47, about a half-hour slower than what I had hoped for.  Over the last two days, I’ve had to keep reminding myself that pace didn’t really matter (ha!), and that I did achieve my fundamental goals — finished the race, no injuries, and raised some $ for Team Parkinson.   

I think there’s another aspect of this which made the 2:47 time hard to accept.  Though I didn’t acknowledge this consciously, I, like many Parkinsonians, look often  for little windows into the disease’s progress (or, hopefully, lack thereof).   So if I could run the Pasadena half in about the same final time as my previous two half-Mars, or even a bit faster, I’d have felt better about my P.D.   Which means that my slower final time does bother me, at least until I remind myself of all of the reasons (excuses?) listed above. 

And the bigger picture is much less bleak.  I finished a half-marathon run in brutal conditions — not bad for a Parkinsonian.   And while I’m going to take a little break from running, I’m  now determined to try another half-Mar.  I’m foolish enough to believe that the next one will go well.  (It couldn’t be any worse!)    And finally, it is, after all, all about the journey — not the 13.1 mile one on Sunday, but the whole training process, the exercise in self-discipline and pushing one’s limits, and the growth in my sense of community — the Parkinson’s community, the running community, my friends, my family.

Thus endeth the blog.  But not my running career, and not my struggle with Parkinson’s.   I intend to fight on, on both fronts, and rather than remember March 22nd as a day of weakness, use it as a learning experience to the extent possible, and otherwise, just let it go.

I haven’t posted all week because I wanted to wait until I was sure that I’m actually going to do this run tomorrow (Sunday).  In brief — I got sick this week (again!); fever, chills, sore throat, etc.;  my doc said it was either the flu or pharyngitis (?); he gave me some new antibiotics on Thursday; I took ‘em; and I feel a bit better today, though not completely better; and now Geoff is picking  me up at 4:30 a.m., and we’ll head up to Pasadena and run and see how it goes.  I’ve done all I can, not under ideal circumstances, but when do you ever have those? — and am excited about this half-marathon.

Just one week  until the half-marathon, and I’m feeling pretty good about it — and am really looking forward to it.  I ran 3.2 miles on Thursday, and 6.0 miles in 62:30 on Saturday.  (The last time I did the six mile neighborhood run, it took me 66:00.)  So, for the week, just over 20 miles.   And  my training has made me confident that I’ll certainly finish the half-marathon, and may run pretty well (for a Parkinsonian!) in doing so.

Researchers are doing some very interesting work on the effects of exercise on Parkinson’s Disease.  I believe exercise is very beneficial, though my evidence is anecdotal (for instance, I know that it’s helped me, and it’s clearly helped John Ball, as well).   Scientists studying the subject have been able to show that laboratory animals who had Parkinson-like symptoms were able to “recover” almost completely when given vigorous exercise every day.  Now the question is whether this, or something like it,  holds true for humans, as well. 

The direct cause of Parkinson’s is the death of critical dopamine-producing neurons in the substantia nigra region of the brain.  But there is no easy answer as to why these cells have died, though it seems likely that a combination of genetic and environmental factors are involved.  I’m especially intrigued by the idea that exercise can help us grow new brain cells, including replacement dopamine-producing cells.  If this is true, then exercise may not “merely” treat the symptoms; it might actually help to reverse the course of the disease.

But regardless, I also know that for me, and for many others, exercise improves my mood, reduces stress, helps me sleep better, and gives me more energy.  If someone offered you a pill that provided these benefits, you’d take it every day.  So I try to take the exercise pill every day;  exercise, for me, is the best medicine.

What a difference one day makes.  On Monday, I was having trouble doing anything.  Yesterday, though, I ran 11 miles.  I was on my own (John was unavailable to join me), and I didn’t want to miss the opportunity for a long run, so I just ran in my neighborhood, and then kept going.  I did 4 circuits of my local 2.35 mile loop; the dog opted out after the first 2, so I put him back in the house and then kept going,  which puzzled him. (Many things puzzle him, though.) Then I added a 1 .6 mile loop, for a nice round total of 11 miles.  Total time: 1:58:45.  Average pace: 10:48.  My pace slowed gradually, which is fine:  for the first  four loops, my pace was 10:15, 10:45, 10:51, and 10:58.  Then, for the final 1.6 miles, 11:15.   (By the way,  think I’d need a 10:42 pace to run the half-marathon in 2:20.)

Today, I’m a bit sore — especially in my hips and thighs — but my spirits are high; I’m very excited about the race.  I still must decide whether to do one more long run before the half-marathon.  My inclination is not to do another 11 or 12 miles, but instead to do an 8 mile trail/hill run at Westridge Canyon, a lovely spot and one that I haven’t been to in a very long time.  And, of course, I’ll continue to do the shorter maintenance runs.

Did the trail/hill run (Runyon Canyon) on Thursday, about 4 miles in about 48 minutes.  An off day on Friday; then the short weekend loop (3.0 miles) on Saturday and again on Sunday.  So — 21 miles total for the week of March 2nd.  As expected, while I had hoped to do a long run (10 miles) over the weekend, various events celebrating my  daughter’s 4th birthday made that impossible.   So I’m planning to try to run 10 tomorrow (Tuesday), which also is the concluding day of the Festival of Lucy.

I’ve said previously that my goals are to finish the race, avoid injury, raise $ for Team Parkinson’s, and have fun.  That’s not entirely true — the glaring omission from that list is time.  On the 22nd, I will certainly be aware of my race pace.  My two previous half-marathon times were 2:24 (about an 11:00 pace) and 2:27 (about an 11:15 pace).  John Ball told me recently that he thought I could run a sub-2:20 half.  That would be wonderful, though I’m not counting on it.  I’d certainly be satisfied w/ achieving my other goals, regardless of my final time.  (“Not bad for a Parkinsonian.”)

And speaking of Parkinson’s — it’s rearing its ugly head again.  Today, for no apparent reason, my meds don’t seem to be doing their job.  More accurately, the reason could be any one (or combination) of many possibilities — lack of sleep, stress, diet, etc.   On the big-picture front, there’s been good news for the patients’ advocacy/pro-cures community.  Today, Pres. Obama reversed the prior administration’s ban on federal funding for almost all embryonic stem cell research (save research conducted using stem cell lines already extant in 2001).  Also, there is promising research news regarding the use of adult skin cells to create pluripotent stem cells.  Yet I feel very far removed from that now.  There are two distinct worlds for me and, I suppose, many others w/ PD or other degenerative diseases.   In the world at large, exciting things are happening; scientists and researchers are making progress; advocates are winning significant battles.  But in my own everyday life, none of this is relevant today.   Today my meds aren’t doing what they’re supposed to, which means I haven’t been able to do most of the things I wanted to accomplish.  So PD is winning this round.  But there will be many other rounds, and I”m in this for the long haul.

3.0 miles on Sunday March 1st, bringing my total for that week to 15 miles.  So, my training regimen before this week has been:

Week of 1/26 – - 14 miles.

Week of 2/2 — 4 miles.

Week of 2/9 — 9.6 miles.

Week of 2/16  — 13.8 miles.

Week of 2/23 — 15 miles

Not exactly the recommended training regimen for a 13.1 mile race – but I have to work with it.   And this week, I’m stepping it up a bit.  Most significantly, on Monday March 2nd, I did my first long run — 8 miles in Griffith Park, with John Ball.  (Didn’t bring the dog because he’d be too distracted by squirrels, horses, golfers, picnickers and their food, etc.)   It was perfect running weather — cloudy and slightly cool (by L.A. standards) –and I really had fun.  Ran 8 miles in 84:00, a 10:30 mile pace.  This was an unexpected boost — I had figured I’d run at an 11:00 pace (88 minutes total).  And I didn’t have to stop at all during the run.  Tuesday was an “off” day, then did an easy 3.2  miles in 33:30 today.  (Ran in the rain, much to my dog’s chagrin — but he’d rather do that than not run at all.)  So I already have 11.2 miles under my belt this week, and will certainly be over 20 by week’s end.   Planning to run a 10 miler, but not sure if it’ll be this weekend or early next week.    Schedule is a bit  uncertain because my daughter’s 4th birthday is on Sunday, so we have a slew of events scheduled for Friday, Saturday and Sunday.  And though I might grumble about it, I wouldn’t have it any other way — I can’t wait to see how excited she’ll be about all the birthday stuff.

So last week’s total mileage was 14 — just one mile longer than the half-marathon I intend to run in a few weeks.  But I’m not really concerned about that.  Tuesday’s 3.2 mile run (mentioned in my last post), Wednesday’s hill run in Runyon Canyon (about 4 miles up and down a fairly steep hill) and today’s 4.7 miles (48:30, well within myself — i.e., I had plenty of juice left at the end) put me at about 12 for this week, and Sunday I’ll do at least 3 more.   More importantly, I just feel good about my running — mentally and physically. 

I’ll do my next — and arguably first —  long run (an 8 miler) on Monday rather than on the weekend, because that’s when my running guru is available.  His name,  by the way, is John Ball, and he and his wife Edna are Team Parkinson.   It would take a ridiculously long blog post to do justice to them and to their work, so I won’t do that.  But here are a few things that you should know:  John and Edna are two of the most generous, selfless, committed people I’ve met.  They founded Team Parkinson, with guidance and funding from the indefatigable Carol Walton of the Parkinson Alliance (Carol is a force of nature, and I’m so glad she’s on our side!), and with brainstorming help from the amazing Mary Yost, in 2000.  John has been diagnosed with Parkinson’s for at least 25 years, and he’s dealt with it by running, running, and running some more.  Edna essentially runs the business and operations side of Team P (Edna  and John — I hope this is accurate!), while John runs and trains and speaks and writes and inspires.  John got me to  acknowledge my illness openly, rather than try to hide it.  John  got me into distance running.  John helped me change my attitude  toward PD and running.  I recall vividly my first long training run with him.  I must have been griping before, during and after the run about how hard this was, how I couldn’t do this, etc.  John finally said, “somewhere within you there’s a runner, but you really need to change your attitude.”  I was taken aback, but attentive.  He explained that this negative “self-talk” was pointless and counterproductive.  He urged me to replace it with positive thoughts — I can do this, I’m going to do this, I’m running 8 miles with Parkinson’s, for god’s sake! 

I still get discouraged and negative sometimes, but I believe in myself and my ability to fight this disease, and I attribute much of my attitudinal (is this a word?) growth to John and Edna and running for Team P.  Unlike Michael J. Fox (for instance), I cannot say honestly that I’m glad I have Parkinson’s, and wouldn’t change a thing if I could turn the clock back to my pre-PD days.  I actually would rather not have the disease!  But that’s not an option.  And I have derived some benefit from P.D. — and among the greatest benefits are the remarkable people I’ve met, and John and Edna are at the top of that list.