Ray D’Alonzo, Ph.D., is an Associate Director of Research and Development at Procter & Gamble Pharmaceuticals where he has worked for 29 years and led research programs in bone metabolism, infectious disease, respiratory disease, arthritis, and nutrition. He has published scientific papers on a wide variety of topics from the chemical composition of fats and oils to the pharmacoeconomics of osteoporosis. Dr. D’Alonzo is the recipient of the Chancellor’s Medal from the University of Massachusetts, Amherst, in part, for his contributions to the development of new pharmaceutical agents. As both a patient and scientist, he has made a personal effort to increase the awareness of Chiari in the health care sector and to assist others afflicted with the syndrome.  He has published the story of his personal struggle with Chiari in a book, Contents Under Pressure, with 100% of royalties going towards Chiari education, awareness, and research programs.

January 31, 2007

Ed. Note:  As many of you know (judging by your support), last fall Ray, Annie, and Adele all ran marathons to raise Chiari awareness and money for research.  Here are their marathon stories...

Ray D'Alonzo

Columbus Marathon October 15, 2006

     I left Cincinnati for Columbus on Saturday, October 14, about 3:30 in the afternoon.  I needed to pick up my racing packet at the Expo Center in Columbus by 7 p.m.  On the way up I listened to the Ohio State/Michigan State football game on the radio as I am a Buckeye fan.  My wife, who planned to accompany me caught a cold earlier in the week and opted to stay home.

     When I arrived at the Expo Center about 5 p.m. it was fairly crowded.  I had to locate my name and bib number on the bulletin board and then get in line to pick up my instructions and bib.  From there, I had to get in another line to pick up my timing chip.  Each racer is given a timing chip on a strap that must be worn around the ankle.  The chip records the exact time that the racer crosses both the start and finish lines to get the accurate total time to complete the marathon.  It took about 15 minutes to get my chip and then I walked around the exhibits looking at everything from running shoes and apparel to power bars.

     I then proceeded to the LaQuinta Inn about 10 miles south of Columbus in Grove City.  I had waited too late to make a room reservation and could not get a reasonable room rate in down-town Columbus so I decided to stay just outside of the city.  After checking in, I went to Grandstand Pizza in Grove City for dinner and pigged out, eating an entire 14 inch pizza with ground beef, bacon and mushrooms.  The waitress was a bit surprised that I finished the entire pizza.  I returned to my room after dinner, watched the Michigan/Penn State game and then went to bed.

     I woke at 5:30 a.m., washed up and went to a nearby Waffle House for breakfast.  I wanted to eat a substantial breakfast 2 hours before race time.  Being a large man and weighing about 225 pounds, a substantial intake of calories is critical to avoid fatigue in the later portion of a marathon.  I had 2 eggs, 2 slices of raisin bread, grits, a waffle with lots of maple syrup, and an orange juice.  I knew that the large dinner and breakfast before the race would result in some discomfort at the beginning of the event but would pay off towards the end of the course.

     I returned to my room, changed into my running outfit, checked out of the Inn and drove into the City.  After parking in a garage near the finish line, I proceeded to walk to the start line area which was about a half mile down High Street.  It was chilly, somewhere in the low 30s.  I arrived at the start line a little after 7 a.m.  I went into the lobby of a high rise office building to stay warm.  I was surprised that it was open and it was pretty much packed with runners.  At 7:45 a.m., the runners started to assemble on the street.  I looked for the 4-hour pacer and joined the group.  The pacer’s name was Catherine.  She appeared to be in her mid thirties and in excellent shape.  I couldn’t help but notice that the group was predominantly middle-aged women and then I realized that the qualifying time for women age 45 to 49 for the Boston marathon was 4 hours.  They all shared the goal of wanting to qualify for the Boston marathon.  I kind of liked the idea of running with a group of young women.

     Columbus was my 5^th marathon and by far the largest.  Approximately 7,000 runners were entered to run the marathon and half-marathon.  It was very crowded at the start line.  About two minutes before the gun, a large 4-engine military cargo plane passed over head just above the high rise buildings setting off a loud cheer from the crowd.  It was perfect for psyching up the runners.  The gun, actually the horn, went off at 8:00 a.m. sharp.  It took about 3 minutes to get to the start line from our initial starting position in the crowd.  It was very crowded but the runners did a good job for the most part at staying courteous to one another.  After about 2 miles, I decided to get ahead of Catherine, the 4-hour pacer.  I knew that I would have to use a port-o-let about half way through the race that would cost me a couple of minutes in time. 

Past the Governor’s mansion

      About 5 miles into the race, we turned into a beautiful neighborhood.  I heard another runner remark that the governor’s mansion was just ahead on the right.  Sure enough, when we got to the mansion, Governor Robert Taft was standing on the corner alone cheering on the runners.  I recognized him instantly, ran over to him and gave him a high 5 slapping my right palm against his left.   Governor Taft is the great grandson of President W. Howard Taft (1909-1913).  Most of the other runners had no idea who he was but many were from out of state.

     Most of the race was uneventful.  The weather was perfect once the sun came up and took the chill out of the air.  I didn’t speak with any of the other runners.  I was focused on breaking 4 hours and it would take my best.  Sure enough at mile 13, I needed to use the port-o-let.  When I came out of the port-o-let and got back into the race, I could see the 4-hour pacer about 100 yards in front of me.  All the pacers held a stick with balloons on them.  I gradually caught up to her and then passed her as I felt fairly comfortable. 

Half way home

     I began to feel a little tired at mile 17 as we approached the Ohio State University campus but I still had plenty of energy left thanks to the big meals.  My legs began to hurt at mile 20 which is normal for many marathon runners.  It seems like we are engineered to run about 20 miles but after that sheer willpower needs to take over.

     I continued to tough it out over the next few miles fighting the generalized leg pain and continuing to hold a respectable pace.  At mile 25, while on track for a 3:57 finish, I felt a sharp pain in my right ham string and the back of my thigh cramped up.  I tried to walk it out for a couple of tenths of a mile and then jog slowly to the finish.  The 4-hour pacer passed me but indicated that she was running a sub 4-hour pace.  I continued to struggle with the leg cramp.  Coming down the last two city blocks of the home stretch right in front of the crowd, my ham cramped again and I stopped dead in my tracks.  I rubbed my leg for a few seconds.

Hamstring snap two blocks from the finish line

      The announcer called out on the PA system.  “Looks like 947 just pulled a ham string.”  The crowd went wild cheering me on and encouraging me to prevail.  I heard someone call out, “Use your good leg!”  With that, I hoppled the remaining two blocks and crossed the finish line.  The crowd erupted into a huge applause.   

Hopping across the finish line in 4:03:48 

     A medic approached me and asked if I needed medical attention.  I told him it was just a cramp and they let me go when they saw that I was able to walk OK.  I missed breaking my 4 hour goal by 3 minutes and 48 seconds but I was still pleased with the race I ran.

     Like the last two marathons I completed, I immediately recalled when I was in a wheel chair waiting for decompression surgery in October of 1999.  The compression to my brainstem had made me weak, first in my upper body and then in my legs making it too difficult to walk.  My arms were so weak I was not able to push my own wheelchair.  The weakness was of an unusual nature.  I had strength upon command but any attempt to use it beyond a few seconds made me terribly sick and nauseous and the muscles in my arms and legs decreased considerably in size from the disuse.  In addition to the weakness, I had a multitude of other symptoms ranging from facial pain to frequent urination.  I was close to total despair.  I had no hope of ever having an active life again.  With that memory vividly fixed in my mind, I closed my eyes for a second and thanked God for giving me another chance as they placed a finisher medal around my neck. -- Ray

Annie Sharich

      I woke up at 4a.m. excited and ready for the day. I ate my French toast and eggs (a somewhat big breakfast for some runners, but just right for me!) and was out the door. I made it to the bus loading station by 5a.m. and was on a bus up the canyon by 5:20a.m. The bus ride up the start line was great! I sat next to a 55 year old man who was from Maryland who had been training for over a year, 40 miles a week! He told me about how he had tried to run a marathon the year before and was unable to finish. He had really picked up his training to be able to finish this marathon and he even wanted to qualify for Boston! Talking to him made me even more excited to get going and see what I was capable of.
     After the long bus ride to the top of the canyon, we finally arrived! It was still dark outside and very cold!! They had a few fires for people to bundle around but everyone else was snuggled up in small groups and was wrapped up in anything they could find from blankets to plastic garbage bags!
     The time came near to starting and I was ready to go. The horn blew and runners were off. It was a slow start because there were thousands of runners all trying to get going at the same time but eventually I got in my groove. It felt great to get going. I was singing along to my music and I was so happy to be there. Because 23 miles of this course was in a canyon, there were not very many spots for spectators so I knew I had to stay focused with my music.
     At mile 7 the sun started to peek over the mountain tops and it was a perfect day. By mile 10, I had finally warmed up enough to take of my jacket! The whole time I was running I just kept thinking to myself, “I can’t believe how good I feel!” This particular course had quite a few hills and they were very scary at times.
     At mile 18, I hit a breaking point. My knee was killing me. I had hardly seen any spectators to cheer and push me forward and I was facing a mile long hill I did not want to go up. I remember thinking to myself that this is the most self-inflicted pain I have ever caused myself. For those people that run, they understand that running is 90% mental. At this point in the marathon, it took all of my mental drive to keep me going. I thought about how I am in pain, yes, but I have been in even more pain, from Chiari, and there are others out there suffering from that very thing right now. I kept telling myself that this run was for them. I pushed up that hill and didn’t look back!
     At mile 23 we got out of the canyon and into the city of St. George, Utah, where there were finally spectators to distract me from my knee pain and to cheer me on! From mile 24 on, I could no longer hold back the tears. As I neared the finish line there was a whole neighborhood block lined with crowds of people cheering us on! It was so overwhelming and wonderful. I crossed the finish line and gave hugs to all those around me. There truly is no other feeling in the world then that of finishing a marathon. -- Annie

Adele Morgan

Baltimore Road Runners Cub, Northern Central Railroad Trail Marathon

     Never did it cross my mind that I would be running a second marathon in 2006! A few days after crossing the finish line of the 110th Boston Marathon on April 17, 2006 in 4:06:07, which was 8 months after my decompression surgery in August 2005, I received an email from Ray congratulating me on my run and suggesting we run a fall marathon together to raise awareness and money for Chiari research. Still on the marathoners “high,” yet enough days post-marathon not to be feeling the quad pain anymore, I considered the challenge. By September 5th, I was committed. Ray had also managed to find another decompressed Chiarian, Annie, who also ran marathons, to join us on our mission. Since we couldn’t coordinate schedules, we each chose our own marathons to run. I looked for a small, yet relatively close (I am from NJ), marathon in late November. The NCR Trail Marathon in northern Baltimore County fit the bill.
     Anyone can do a marathon, it’s the 16 weeks of training before the marathon that will kill you. Crossing the finish line is great, but it’s not just those past 4 hours you remember, but rather those past 4 months. For those of you unfamiliar with marathon training, many training programs average between 13 and 16 weeks. You of course go into that training with at least 3 months of solid running of about 10-15 miles a week before beginning a marathon program. The KEY to properly training for the marathon is the weekend long run. Each week you slightly increase your weekend long run, so that about 3 weeks out from the marathon you are heading out for an 18-20 miler on a Sunday morning.
     I always did mine on Sundays on the D & R Canal with an eclectic group of running buddies (Somerset Runners) I’ve attached to over the years. Without them I would have not made it though some of those training runs on the canal. They cared for me during my decompression surgery and recovery; cooking dinners for my family and visiting me in the hospital, and then when it was time for me to start “running” again (3 months after surgery), they walked by side when I needed a break and didn’t leave me behind on the canal. As my strength and endurance picked up, I always had a partner or two to train with mid-week and on the weekends. During those runs, they endured my medical monologues about Chiari, cerebral spinal fluid, lumbar shunts, steroids, intracranial pressure….I’d be hard-pressed to find any of them who don’t have a “Masters in Chiari” by now. Although it was me who had originally qualified myself to run the Boston Marathon, it was THEM who motivated me and moved me along to get me to the finish line in Boston.
     But wait, isn’t this supposed to be a re-cap of my NCR Trail Marathon in November in which I teamed up with Ray and Annie to raise awareness for Chiari? It is, but it couldn’t be without a mention of Boston. Because when Dr. Chimenti, my neurosurgeon, informed me that I was hydrocephalic and needed immediate decompression surgery, the VERY first question I asked him was, “Will I be able to run the Boston Marathon in 8 months?” Having just recently met me, but already understanding my obsessive personality, he replied with, “I don’t see why not.” And THOSE were the only words I needed to hear to know that I would be a marathoner once again.
     Back to the NCR Trail Marathon. The Somerset Runners were rather surprised that I would consider another marathon that year. And I’ll be honest with all of you, training during the summer months was NOT easy for a me. I had an enormous amount of headaches this past summer and visited my neurosurgeon, an acupuncturist and a neurologist during my training. I had to cut back the speed runs (too much ICP) and run later in the evening or early in the morning during August when it was so hot and humid. Medications from my neurologist seemed to calm things down a bit, and as long as they told me I could still keep going I was out there. Running, swimming, biking, weight-lifting….the more moving I did, the less I thought about my headaches. To balance things, I took a lot of mid-day naps.
     I was somewhat disappointed in myself during this training as I had committed myself to Ray, Annie and the Conquer Chiari Foundation, but I was not able to get in all the long runs I had planned. My previous busy life of coaching and teaching had resumed in September and there did not seem to be enough hours in the week. Nor was my body cooperating with me as much as I had hoped. However, I accepted the fact that this marathon was to be about the journey and what it represented, and not about the finishing time. That realization in itself made things a bit easier.
     This being my 5th marathon, I was more laid back than ever. First of all, it was a trail marathon-a basically flat, dirt and stone crushed surface, very similar to what I run on the canal every week. Secondly, this was going to be the smallest marathon I would ever be running. (NY was over 25, 000; Philly, which I did twice, was over 5, 000; and Boston was over 20,000) NCR was going to be under 500. There was not a lot of planning needed for this race. I would be able to show up race morning, just like I was going out for a Sunday run with my friends. And that is how I approached the run-a day running with some friends.
     On the Saturday after Thanksgiving, I woke up at 4:30 am to drive down to Maryland by myself. Originally my husband and the boys were going to come down with me and stay with our good friends in DC and we would all spend some time together after the run, but as usual, plans always change and I was going to do it all in one day. (We had decided to put in a new kitchen and family room floor back on Labor Day and it still wasn’t done. And now with Christmas looming, someone had to stay home to get the work finished!)
      My drive down was nothing short of heaven. As the mom of two boys, ages 6 and 9, three hours of uninterrupted “ME” time, especially when it involved listening to my own music, was priceless. I ate my traditional peanut butter-and-banana-on-whole-wheat and drank my tea. I also drank lots of water and Gatorade Rain-(berry flavor) on the ride down, of course having to make a few stops along the way.
     When I arrived at the Sparks Elementary School in northern Maryland, I was pleasantly surprised that I was able to drive right into the parking lot, walk right into the school, pick up my race # and goodie bag and be back out to my car in less than 15 minutes. The weather was absolutely gorgeous for a marathon and I was sporting a new outfit that day for the occasion. I had my fluid belt filled with Gatorade and water along with some Gu Gels and a PowerBar in my pack (all chocolate/mocha flavored). I made sure I greased up my body with Body Glide (something long-distance runners use on spots where blisters might appear).There was still about 30 minutes before the race start, so I mingled with the marathoners and spectators, hit the bathroom, and stretched out a bit. When it was time to begin, we all headed out of the parking lot to the start. What a small group! It was like running a neighborhood 5K, not a marathon!
      After an uneventful gunshot we were off. The course started with gently rolling roads for about 2 miles before hooking up to the NCR trail. Along the road, I teamed up with a guy, Mike, from Fredricksburg, and we shared life stories for the next few miles. We stayed together for quite awhile. He waited for me at mile 4, my first rest stop, where I needed to use the bathroom and sucked down an Espresso Love Gu and some water. We were thoroughly enjoying each other’s company, but unfortunately, he was on pace to run a 4-hour marathon and I was looking to run somewhere between a 4:15-4:30. We had to split up at about mile 8 as I knew that I would be hurting at mile 18 if I continued running sub-9:00 minute miles.
     The trail was stunning. It was  typical of an early fall day, not an end-of-November fall day. The path itself was very similar to the D & R canal in terrain. Since we were less than 500 runners, the “packs” of runners slowly thinned out. In larger marathons you were never alone, but I could see that at some point, I would be running by myself.
      A question I am often asked by non-marathoners is, “When/Where do you go to the bathroom?” Well, you are all going to find out as there is lots of humor in that for marathoners. Some runs, I’ve been lucky, I’ve only had to stop and go once. Today however, was not the case. Not exactly sure why, but it seems that instead of sweating it all out, I needed to pee it all out! I was lucky to have a bathroom at mile 4, but by the half (13.1 miles) which was 2:05 into the run, there was not a port-o-john to be found and I REALLY had to go! The turn around point for the half was a cooler and a man in the middle of the trail. He informed me that the closest rest stop was about another mile down. Doing quick calculations in my head, I realized that would be adding 2 more miles to my run (there and back) so I headed for the woods! I found a nice big tree to “hide” behind and did my thing! Got back on the trail, walked for about 2-3 minutes while I ate half of my Chocolate Power Bar and drank quite a few cups of water at the water stop. During my walk, some of the other runners I had been chatting with were approaching the ½ way mark and we shared our customary “Hello’s, How you feeling?,” and “Keep it going,” and continued on.
     The second half of the marathon is when you mentally really need to get in gear. When I ran Philly and qualified for Boston (pre-decompression surgery), I trained to run, and ran, the second half in a negative split, which means I ran the second half faster than the first. For this marathon, my goal was now to tune into my iPod and just enjoy the scenery, and the run itself. I planned it this way, knowing that with so little runners (and spectators) this second half could be difficult and lonely. I had 2 ½ hours on my iPod and was ready to go. “All Star” by Smash Mouth kicked things off and I got back into a nice groove on the trail. By mile 16 I was pretty much alone, minus a few runners ahead and behind me that I could see and “Let’s Get it Started” by the Black Eyed Peas kept me going. My pace had slowed down a bit, but not my bladder!!! Just before mile 18 there was a “port-o-spot” and I needed to venture in. Again. Just after the stop there was another water/aid station and I fueled myself with more water and lots of red gummy bears!
     I didn’t really pay much attention to the mile markers as I had done in previous marathons. Don’t get me wrong, I was counting them down, but running with music made those last miles a bit easier. And believe me, at this point I was not “pain-free” but it was such a gorgeous day for a run….I sucked in another Gu Gel at mile 20, zoned out to Big & Rich’s “Comin’ to Your City,” and continued on my way.
     Mile 22-guess what? Another bathroom break. This time in the same rest stop along the trail that I stopped in at mile 4. My bladder was just NOT cooperating with me. With 4 bathroom breaks in total for this run, I figured I lost about 8 minutes in time!
     Soon to come at the next aid station were some Oreo cookies and a fistful of M&M’s which I jammed into my running pouch. At just around mile 24, we ventured off the trail and back onto the road for the last few miles to the school. Those “gently rolling roads” coming down when it was mile 1 and 2 now felt like I was climbing Mt. Everest. I actually had to walk from about mile 24.5 to just over 25, something I never usually do, except when I stop to eat or drink at an aid station. I was in dire need of some motivational music to pull me through and “We Live” by Superchick was on next. I highly recommend downloading this song when you get the chance.
      The hill peaked and I was now on a downhill. Saving Jane’s “Girl Next Door” was on next and I had just over 1 mile to go. There were orange traffic cones along the side of the road to keep the runners and cars separate. I was getting a little bored, so I “slalomed” the cones just to make it interesting. I’m sure I drove the guy behind me crazy!
     Ugh, there was another hill. But, this was the LAST hill as I could see the elementary school up top. In most marathons, there are throngs of people cheering you to the end. At this marathon, it was all me. U2’s “Beautiful Day” was now on, and I picked up the pace just enough to cross that finish line in 4:21 looking strong for the few spectators, runners and race volunteers that were there. My pal Mike that I had run with in the beginning was waiting for me! That was a treat as I had no friends or family with me that day.
     I walked over to the volunteers, grabbed my “space blanket” (to retain bodyheat), had them remove my ankle band which had my race chip in it, picked up some water and headed to my car to get a change of clothes. When I got back in the school, I couldn’t wait to get out of my sweaty clothes and put on my soft, fuzzy sweats and clean socks and sandals. Yes, sandals, not sneakers, for the ride home. The race organizers had homemade vegetable soup, bagels, oranges, bananas and lots of water for the finishers. Runners were in the gym trading war stories. Surprisingly, I ran into someone from my hometown! I had seen his name on the entry list when I had checked on-line, but had forgotten about it until that moment. I chatted with him and his family, listened to the awards ceremony, and then decided it was time to get back on the road. Overall I had finished 219 out of 331 runners.
     The 170 mile ride home was just as peaceful as the ride down although my body was a bit stiffer. When I walked into our house, dinner was waiting for me. My husband had made decent progress on the floor and the first question out of my boys’ mouths were “What place did you come in?” Too cute.
     Keep in mind, that each day you have, no matter how challenging, is a gift. I leave you with this quote from Mary Anne Radmacher:

Live with intention.
Walk to the edge.
Listen hard.
Practice wellness.
Play with abandon.
Laugh.
Choose with no regret.
Continue to learn.
Appreciate your friends.
Do what you love.
Live as if this is all there is.

Shirt Worn By Adele At The Boston Marathon

-- Adele

 ** If you would like to share your comments, thoughts, or ideas with Ray,  please send them to dalonzo.rp@fuse.net.  Due to the volume and nature of email received, individual responses are not possible. **

[Ed. Note:  The opinions expressed above are solely those of the author.  They do not represent the opinions of the editor, publisher, or this publication.  Mr. D'Alonzo is not a medical doctor and does not give medical advice.  Anyone with a medical problem is strongly encouraged to seek professional medical care.]    
 

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