Tuesday, September 21, 2010

World Alzheimer's Day 2010

Today, World Alzheimer’s Day 2010, we have seen new levels of attention around the reality of Alzheimer’s disease, including the millions affected in the United States and across the globe.

More than 40 research riders in the Alzheimer’s Breakthrough RideSM arrived in Washington, D.C. to deliver the signatures of over 100,000 Americans who want Congress to make Alzheimer’s a national priority.

Alzheimer’s Disease International released the new World Alzheimer Report 2010, highlighting the growing costs of dementia care.

All week long, Alzheimer’s Association Celebrity Champions are appearing on “Who Wants to be a Millionaire” to raise awareness and funds for Alzheimer research, care and support. Throughout the next few months, thousands of people across the country will duplicate their efforts by participating in local Memory Walk® events.

Despite these small victories, Alzheimer’s disease looms in a state of deepening crisis. More than five million Americans are affected by this devastating disease, a number that will only grow faster as the baby boomer generation ages. Left unchecked, the costs for Alzheimer care and services will continue to rise, straining our overwhelmed healthcare system and threatening to bankrupt Medicare and Medicaid.

Bearing these things in mind, we must remain vigilant in bringing more support to our cause:

It is the support at of people exactly like you who have helped to make World Alzheimer’s Day 2010 such a success. And it will be people exactly like you who drive the change necessary to bring an end to Alzheimer’s disease in the future.

Thank you,

Angela Geiger, Chief Strategy Officer, Alzheimer’s Association

Monday, September 20, 2010

Alzheimer's Breakthrough Ride Journal: Indianapolis to Ann Arbor

In light of what those who rode before us have endured, I wish I had a tale of woe to tell, but alas, this particular segment of the Alzheimer’s Breakthrough Ride was nothing shy of epic riding. We had trained for all conditions…except perfection. By the mid-afternoons, it was mostly sunny and in the low 80s. The few clouds that were present had that distinct late summer softness to their contours. If it can be imagined, it was as though Ann Huston took her paintbrush to the Midwestern sky. As a cyclist though, your eyes should be on the road, and the roads we traveled were oddly smooth - a particularly lucky happenstance given that back roads in the Midwest are often abused by winter and neglected by man. Then there was the greatest gift of all - an unceasing tail wind that nudged us along 215 out of the 289 miles. The three of us shattered our previous records, reaching speeds in excess of 35 mph on the flats. We didn’t maintain this speed; we just wanted to see what was possible, so on a perfectly smooth country road about 30 miles out of Indianapolis, we let loose for just short of a ½ mile.

As if the weather and roads weren’t gift enough, we were also graced with the company of Evan, Melanie, and Glenn – the greatest Pony Express crew ever assembled. As much pain as I may experience after 290 miles of riding, I was sad to leave them and would happily have pedaled on through the next segment just to share their company for a few more days. They have been on the road for eight weeks with at best a day or two off, and yet they managed to keep us warm, keep us fed, keep us hydrated, and to keep us laughing for four days. Perhaps needless to say, they also managed to find their way into our hearts.

It isn’t of great surprise that the people associated with this ride - such as Melanie, Evan, and Glenn - would be people of exceptional spirit. It isn’t of great surprise that those of you reading this would be people of exceptional compassion. For most of us, we are all too familiar with the pain that this disease brings. But bore of this pain, is an incredible beauty and testament to the human spirit: We now stand together in hope, in faith, and in action that we will bring an end to the heartbreak that is Alzheimer’s disease.
I am honored to stand amongst you in this effort and I wish us all an epic success.

- Angela Bruno is a neuroscience doctoral candidate at Rosalind Franklin University of Medicine and Science (RFUMS).

Sunday, September 19, 2010

Alzheimer's Breakthrough Ride Journal: Cleveland to Pittsburgh Day 2

First of all, I am not an Alzheimer’s Researcher. I am what was often referred to as an “other,” meaning I have a personal connection to Alzheimer’s disease. My wife is a genetics researcher and a colleague of Dr. Bruce Lamb. Bruce sent a fundraising email to my wife, she forwarded it to me thinking I would “sign the petition and donate $50.” Instead I emailed Bruce, explained my story and asked to join the team Cleveland Rocks. Boy was she surprised that evening!

On day 2, our team consisted of me, Dr. Bruce Lamb and Dr. William Lynch. Both Bruce and Bill were more experienced riders than I; I actually bought my road bike the last week of July. Not that I wasn’t active before joining the team, but I was training for a sprint triathlon, not a long distance ride. Needless to say, I began hill and endurance training immediately.

I am riding in honor of my Grandpa Darrah, who died with Alzheimer’s disease. I found that my training rides and my ride from Cleveland to Pittsburgh were spent thinking of my grandpa and grandparents in general. All of my grandparents have passed but I feel very lucky to have known them well. My grandpa Darrah was more than just a grandpa; he was also a friend and roommate. I lived with him for almost seven years, and ended up being one of his primary caregivers.

Our day 2 from Boardman, Ohio to Pittsburgh, Pennsylvania was rather uneventful, except for the constant rolling hills. In some ways I am glad that Bruce and Bill were often a little ahead of me, because I was often talking or chanting to myself. I found myself saying “this is not suffering.” I remembered my grandpa’s anger and frustration as he would try to communicate his needs and wants but couldn’t. I often whispered on the toughest hills “this is only one hill” thinking grandpa and others with Alzheimer’s had years of “tough hills.” I remembered coming home one day to find my grandma’s silver flatware in the garbage, when I removed it he said “but I have a lot of that” referring to the normal silverware. It was these memories and occasional chanting that got me through the constant hills.

All of these memories and the hills made the ride a bit of an emotional rollercoaster, in addition to a physical one. Bruce and Bill were wonderful to ride with; they were supportive and helped to keep things light. The road crew of Melanie and Glen were awesome; they seemed to anticipate our every need and I always felt safe even with semis and dump trucks barreling down on me. I am a little disappointed that I never got to try the famous Peanut Butter Fold Overs…oh well, maybe in D.C. I think my favorite part was the people we met along the way either at the hotel, a rest stop or at the signing event. Their appreciation, stories and personal dedication truly made this a special experience that I will never forget.

- Michael Darrah

Friday, September 17, 2010

Alzheimer's Breakthrough Ride Journal: Ann Arbor to Cleveland Day 2

The second day of the ride from Ann Arbor to Cleveland started similar to the first. It was a crisp, cool (52 degrees) morning as we headed out of Perrysburg towards Sandusky at 7 AM (a total of a little more than 60 miles). Although a bit warmer than the first morning, Charlie and I still had on our tights, gloves and windbreakers for the first few hours of the morning. There was also a forecast of rain for later in the day. I was feeling a bit stiff from the first days ride, but slowly loosened up over the first few miles. We had several railroad crossings that both Charlie and I had a much greater respect and appreciation for after the previous days ride.

A bit after the first rest stop, we had our first excitement of the day. As we passed a small farmhouse, a medium to large size dog, bee-lined towards my bike with teeth bared and a ferocious snarl. I instinctively sped up and swerved onto the opposite side of the road (thankfully few cars were on these roads this early on a Saturday morning). With the dog at my heels and my heart pounding, I thought about trying to kick the dog, although my shoes were firmly clipped into my pedals. Instead, I sped up even further and after an equal burst of speed from the dog, he finally retreated to the side of the road. I turned around to see if the dog had any designs on Charlie, who was only 50-100 yards behind me. Thankfully, the effort required in chasing my bike seemed to have exhausted the dog who remained on the side of the road panting. For the rest of the day I relived this episode and jumped off my bike at the sound of every barking dog…

The next 20 miles or so were into a strong head wind that both Charlie and I felt like we were slogging through even though the terrain was quite flat. After an excellent lunch on the Pony, we completed the day uneventfully and arrived into Sandusky just as the first rain drops started to fall. That night we enjoyed hamburgers at a local restaurant/bar, which was filled with Ohio State buckeye fans rooting on their team. Later that evening, we were joined by my son (Raza Lamb) and Dr. Sanjay Pimplikar, who would ride the final day from Sandusky to Cleveland with us.

The three days riding with Charlie were wonderful. We had cool days and dry, flat roads through wonderful farm country (albeit with a few too many railroad crossings and dogs!). In addition, it was inspirational to ride with a 75-year-old man who was so committed to bringing awareness to dementia and Alzheimer’s disease. We talked at length about how as Americans we need to do much more to effectively integrate individuals with Alzheimer’s disease and their caregivers into our families, communities and society.

Alzheimer's Breakthrough Ride Journal: Ann Arbor to Cleveland

I started my adventure at the signing event in Ann Arbor on Thursday afternoon where I was deeply moved by the story told by a young lady about her life with a 31 year old husband who had early onset Alzheimer's disease.

We started our trip early the next morning on a sunny day. Thankfully it was cool, which prompted me to wear several layers of clothing. This served me well shortly after breakfast when I had a small altercation with a rail road crossing. The result was only some mild "roads rash" and injured pride. The remainder of the day went well and I was able to enjoy the rest of the trip.

I road the 200 miles to Cleveland to find my wife Carolyn who is slipping into the fog of dementia. Her talents as a mother, wife, scientist, and doll artist are being shrouded by a thick haze, but SHE IS STILL THERE. It is up to me as her primary care giver with the help of our family, friends, and our entire community to shine some light through the haze and highlight her unique talents and thus to preserve her intrinsic value and worth, which is her humanity.

It is incumbent on all of us to seek out those who are being drawn into the murky world of dementia and to continue to highlight their uniqueness and preserve their humanity.

-Charlie Farrell, M.D., is a retired vascular surgeon with a life-long interest in participating in and promoting running and multi-sport training.

Wednesday, September 15, 2010

100,000 Americans Demand an Alzheimer's Breakthrough

Thank you and congratulations! With your help, the Alzheimer's Breakthrough RideSM has collected 100,000 signatures for a petition asking Congress to make Alzheimer's disease a national priority. We deeply appreciate your efforts to make this goal a reality.

On Sept. 21, World Alzheimer's Day, the Ride will culminate in our nation's capital as researchers who collectively cycled more than 4,500 miles cross-country deliver signatures to Congress. These riders are sending a critical message on our behalf: Alzheimer's disease can no longer be ignored. We must have additional resources for research, care and support.

But this isn't the finish line in the fight against Alzheimer's. Take further action today:

Thank you for helping to make Alzheimer's disease a national priority. We're proud to share your voice with Congress on World Alzheimer's Day.

With gratitude,

Bruce Lamb, Ph.D.
Associate Staff Scientist
Lerner Research Institute
Cleveland Clinic

Friday, September 10, 2010

Alzheimer's Breakthrough Ride Journal: Madison to Chicago and Points Beyond

Alzheimer's Breakthrough Ride: Eric Norstrom signs the Breakthrough Brain

My journey on the Alzheimer’s Breakthrough Ride would consist of three days of riding. Two days to complete the Madison-Chicago segment and an additional day to ride the first leg of the Chicago to Indy segment. Each day brought something new: meeting great new friends, inspiration in the fight against Alzheimer’s, and great riding through America’s heartland.

I finished up our lab work on Tuesday and headed to Madison, where the weather looked rather daunting for the following day’s ride. Bright and early, I met the other riders in the lobby of our hotel. Well not so bright due to the ominous clouds, but certainly early. The brightest parts of the morning were actually the team of riders - Barb Bendlin, Michele Riese, and Michael Walters as well as the incredible support staff, Evan, Glen and Melanie. We got to know each other over a hearty breakfast, and then it was time to ride! Miraculously, the heavy weather stayed ahead and behind us as we made our way through the rolling hills of southern Wisconsin toward the flat prairies of Illinois spurred on by cool temperatures and a slight tailwind. As others have noted, Glen and Melanie in the follow and lead cars did a great job of keeping the traffic at bay. The rain also kept mostly at bay, but we occasionally found ourselves pedaling through a chilly spritzing. Our spirits could not be dampened, however. After each stop, we began pedaling again with a rousing cry of “Breakthrough!” Barb and Michele had seemingly boundless energy while Michael, who had some reservations about the distance initially, began to realize his cycling potential with every passing mile. Things were going great until a set of slick train tracks in Edgerton, WI sent Barb and Michael to the pavement. When a police officer came by to offer help, Barb’s only request was that he sign the petition! Way to stay on message, Barb! After some patching and bandaging, we were on our way again. Breakthrough! The rain cleared out and we finally arrived at Woodstock, IL 90 miles, and 2000 kiloJoules later. We averaged a little over 100 watts of power output while riding - 4 bright light bulbs riding to abolish Alzheimer’s disease. Woodstock was a gracious host.

Thursday was an eventful ride into Chicago. In the “+” column: We were joined by Alzheimer’s Association CEO Harry Johns, who would ride with us all the way into Chicago. In the “-” column was the rain and a flat tire just a few miles from our destination in downtown Chicago. We knew there was a crowd waiting to meet us, and the rain had already pushed us behind schedule, even forcing an unplanned shuttling of bikes and riders for part of the segment, so a quick tube change and we were on our way again. At about 1PM, we arrived at the Thompson Center to the cheers of the assembled crowd - an amazing and inspiring moment. The energy was high as some heartfelt speeches were made and more signatures were collected. Chicago’s my home town, so I couldn’t resist a quick trip into the lab to check on an experiment. Then it was back to the hotel to say goodbye to the Chicago-to-Madison team (see you in DC!) and to get some rest for Friday’s ride into Indiana.

On Friday morning, Kevin Laxton and I set off in the chilly morning air with the sun rising over Lake Michigan as our backdrop. On the lakefront path, I saw some friends who wished us luck on our journey. We had about 90 miles to ride, but the open roads and beautiful prairie fields of Indiana made it go by in a flash. We happened to ride by Fair Oak farms in Indiana, so I convinced the crew to stop and try some cheese curds which squeaked with freshness. The woman at the checkout counter told us her grandmother suffered from Alzheimer’s disease and wished us luck on our ride. From there, it was a short ride to Rensselaer, IN where we’d stop for the night. Marc Prevot came in that evening to continue the ride with Kevin, and I headed back to Chicago full of inspiration and gratitude to have been part of this excellent endeavor.
These three days were certainly some of the most meaningful miles I’ve ever pedaled my bike through. I’m looking forward to continuing the effort in DC. It’s time we made Alzheimer’s disease a national priority.

-Eric Norstrom, Ph.D., is a postdoctoral scholar in the department of neurobiology at the University of Chicago.

Thursday, September 9, 2010

Alzheimer's Breakthrough Ride Journal: Madison to Chicago Part 2

Alzheimer's Breakthrough Ride: Michelle Ries signs the Breakthrough Brain

On Tuesday morning I met my fellow riders (Eric - who I believe is still on the road) and Michael. My friend and colleague Barb was there also, and Mel, Glenn, and Evan - the most fabulous, helpful road crew a bicyclist could ever hope for!! (Thanks you guys!) The organization of this event and the people I got to meet made this a fantastic experience. Day 1 was spent riding through country roads of Wisconsin - enjoying the beautiful hills, foliage that must have been 8 shades of green, rows of fully-grown corn and soybean plants, and the interplay of high gray clouds and misty low-lying clouds moving across the sky. At that point, we bikers owned the road and were able to chat and get to know each other. The afternoon in Illinois found us on busier thoroughfares, and we were funneled into a single-line formation - braving tractor trailers and tiny road shoulders with potholes. Rain was sporadic through the afternoon, but really was mostly refreshing as the day wore on. On Day 2 there was quite a bit of rain. But like the brave soldiers we were, we headed out en force! We made our way along some busy roads in Illinois. After some lessons in defensive driving on a bike, we moved through some pleasant neighborhoods, and then onto a lovely, lovely and oh-so-peaceful bikepath. I'll admit (I'm probably not supposed to say this), we did get washed out for a bit - the rain necessitated some travel-by-van. Riding through Chicago was probably my favorite part - and the reception downtown was just marvelous.

The total experience on this Madison-to-Chicago leg was one that I would unhesitatingly want to do again! Not only did I get to assist in raising awareness for the Alzheimer's Breakthrough Act, meet fabulous people, and undoubtedly improve my BMI, but I learned a few tips about bicycling that I'm happy to pass onto readers of this blog. These may sound obvious, but even I (a self-proclaimed master-of-the-obvious) found that these tips would be good to have in mind once mounted on a bike.

  1. Don't ride with a flat tire. (I have no idea of how long I did this... but when riding with a flat and trying to keep up with my teammates, the thought occurred to me that I must be riding with Olympians.)
  2. Ride perpendicular to railroad tracks. The emphasis on this should be multiplied by 3 if it has rained. Emphasis should be multiplied by 10 if it has rained AND there is corn on the road. (2 of my teammates learned this the hard way - and they have the battle wounds to prove it. Both looked pretty dazed and confused immediately after the fall. I haven't told them personally yet, but they're my heros.)
  3. Be a courteous cyclist. By this, I mean - point out to your fellow cyclists upcoming potholes, cyclists, cars, etc. that one would want to avoid coming in contact with while on a bike. (FYI: Eric Nostrom is the most courteous cyclist I have ever met - not that I've actually met that many cyclists - but I do think it would be hard to beat him in this category.)
  4. Eat something! Almost everyone on the trip said this to me in an assertive - but certainly-not-chastising tone at some point over the course of 2 days. And you know what? They were right! So for God's sake - Eat something!
  5. Wear a helmet. (For an example of why this is important, see point 2)
  6. Cycle for a good cause!!! I'll say no more. Everyone on this site knows this is important.
I'm glad to have been a part of this event! Alzheimer's research is certainly in need of more funding. Although I won't be in D.C., my heart will be there. Thank you Bruce Lamb for generating the idea for this ride, and best of luck to the leadership of the Alzheimer's Association while in D.C. and beyond!! And I send my love to those folks out there who are personally touched by Alzheimer's disease. This ride is a sign of our (i.e., researchers, clinicians, and everyone involved in this endeavor) commitment to you.

- Michele Ries, Ph.D., is an assistant scientist in the School of Medicine and Public Health at the University of Wisconsin in Madison.

Alzheimer's Breakthrough Ride Journal: Madison to Chicago Part 1

Alzheimer's Breakthrough Ride: Chicago Signing Event

I recently rode in the Alzheimer’s Breakthrough Ride, a cross-country relay to raise awareness about Alzheimer’s disease. I rode in the leg from Madison to Chicago on September 1-2. What follows are the notes I recently posted on the blog associated with the ride.

Alzheimer’s Breakthrough Ride Journal: Madison to Chicago

My Breakthrough Ride experience began in mid-April when the winter snows unexpectedly receded from the Minneapolis landscape and I could start training on the bike trails around Lakes Harriet and Calhoun. I was quite anxious about the ride, given that I hadn’t ridden over about 20 miles at one time in many years. And I knew that we would be riding 90 miles on the first day out of Madison and about 65 miles on the second day to get to Chicago. I rode the trails in high winds, in sleet, in winds that pushed my bike from the path as angry spring storms blew in off the Canadian plains. Why did I do this? Apart from the obvious challenge the ride itself presented, I was inspired in my training by Dr. Karen Ashe, an Alzheimer’s researcher at the University of Minnesota, and Director of the N. Bud Grossman Center for Memory Research and Care. Her passion for discovering a means to prevent Alzheimer’s disease instilled in me a desire to do something that could help make an impact on the course of Alzheimer’s research in the United States, and could help change the course of how we prevent and treat the disease in a global sense. I view my participation in the Breakthrough Ride as one tiny part of a collective effort to make the dream of a world without this scourge of a disease a reality.

So I pedaled through April, May, June, July and August. In the heat and wind, past roller-bladers, low-riders, and Burley’s. In these pages, I read with trepidation of the heat, the winds, the spills as the relay moved across the desert and on into the Midwest. But more than being impressed by the challenge of the elements alone, the depth of emotion and passion of the researcher-riders fascinated and inspired me to continue on to my appointment in Madison.

As it turned out, the ride was certainly not as hellacious as the premonitions my tired mind had conjured up. The weather on the first day (Madison, WI to Woodstock, IL) was overcast and cool, relative to the 100+-degree days that previous legs of the relay had to endure. The rolling hills and cornfields of southern Wisconsin were beautiful. Sure, a 90-mile ride is never easy, but the care given to us riders by the relay-support staff (Glenn, Melanie, and Evan) transformed miles into rides-around-the-block and hours into minutes. There were the trucks and harried auto drivers to deal with and the rough shoulders and the cracked pavement, too, but the smiles and the jokes and the sharing and the PBFO’s (peanut-butter fold-overs) took away the “mental” part of the ride. And the training I had done over the proceeding weeks turned out to be sufficient enough to smooth out the physical challenges of the long ride.

The second day turned out to be a bit more of a challenge. Our second-day leg was interrupted by heavy rains that always seemed to be on the verge of letting up, but never really doing so. Since we had to be Chicago for the noontime rally, we were “airlifted” to an advance drop-site on the Lake Michigan shoreline. The rain stopped and we were led into Chicago by Harry Johns, the CEO and President of the Alzheimer's Association. (Of course, we had a flat tire in the last four miles of the ride!) Actually, Harry insisted that Barb, Michele, Eric and I lead the group of us into the Chicago rally. But there is no question that Harry led us into Chicago since there is no way anyone else could have described and followed the route he led us on through the maze of paths, into a parking garage, and down a grass covered embankment to the streets of the Windy City. We finally entered the chaos of Chicago noontime traffic when we made it to Randolph Street and could sense that the completion of our ride was only a few blocks ahead. I remember turning to Eric Norstrom (a native of Chicago) and asking him if there were any rules for driving in Chicago traffic. I think I heard him say “try to miss the cars!” It was an exciting last few blocks to the Thompson Center where we were cheered into the Plaza by an enthusiastic, cheering crowd of well-wishers and volunteers. (Shades of “Ferris Bueller’s Day Off” but without the music or Mia Sara.) What a great way to end a trip I will never forget!

Did I forget to mention the incident at the Edgerton Crossing? Suffice it to say that I now know that it is critically important to traverse railroad crossings at a vector perpendicular to the tracks and at slow speed. Despite admonitions to this effect that I had received seemingly only hours before, I attempted the impossible and lost to gravity and lack of friction. Luckily nothing was broken, though I suspect I might have bent a rail. (Stacy, my wife, and I visited the infamous site on our way home to the Twin Cities and some damage to the rails appeared evident.) The fall was scary and painful and embarrassing and bruising. It was a challenge for me to pick myself up and keep going, fearing another fall or another set of railroad tracks. But I knew that I would heal, the bruises would fade, and the scrapes and scratches would eventually stop bleeding, scar over, and disappear.

And this made me think of those afflicted with Alzheimer’s disease and their care-givers and families and friends for which there is pain, and fear, and embarrassment and scrapes and scratches with no hope of recovery. And that is what helped get me back on my bike and continue the ride, filled with the hope that our riding and the signatures we are gathering, and the enhanced funding we seek might lead to a future where the healing of those with Alzheimer’s disease could start, and their fear and bruising and trauma and anxiety could be made to fade away.

Good luck to the riders and I will see you in Washington!

-Dr. Michael A. Walters is a member of the faculty of the Medicinal Chemistry Department at the University of Minnesota, a Director in the Institute for Therapeutics Discovery and Development, and a collaborating member of the N. Bud Grossman Center for Memory Research and Care.

Wednesday, September 8, 2010

Alzheimer's Breakthrough Ride Journal: Saint Louis to Madison

Alzheimer's Breakthrough Ride: Rong Wang and Stephanie Soscia

Before I begin to explain my journey from St. Louis, Missouri to Madison, Wisconsin, I would like to tell you a little about myself. I am a graduate student at Boston University School of Medicine in the Department of Anatomy and Neurobiology (finishing up this year – fingers crossed!), and I am conducting my thesis work in the laboratory of Dr. Rudy Tanzi in the Genetics and Aging Research Unit at Massachusetts General Hospital. On a personal note, my mother started showing symptoms of Alzheimer’s disease at the age of 56, when I was 21 years old. In November 2006, she was officially diagnosed with the disease at the age of 60, and at that point I became an Alzheimer’s caregiver in addition to Alzheimer’s researcher. Over the past few years I have witnessed my mother’s gradual mental decline, to a point where she is unable to recognize me anymore. Moreover, the effect my mother’s decline has had on my father, her primary caregiver, is utterly devastating. I return home to Rhode Island frequently to relieve my father of his caregiving duties, and these trips are generally filled with exhaustion, frustration, and sorrow.

I rode a total of 350 miles with my parents in mind the entire time. Many people commented that I must be so brave to commit to so many miles. In my mind there is nothing more terrifying than Alzheimer’s disease, and I could only hope to be as brave as my mother and father, who have the courage to face it every single day.

After filling up on Mexican food and saying farewell to Team Boston Bikers who rode with me from St. Louis to Springfield, I met Dr. Rong Wong of Mount Sinai School of Medicine, who would be biking with me for the next 3 days all the way to Madison, WI. The following morning at breakfast my second meeting with Rong was quite interesting. I was complaining to the support crew (Evan, Kyle and Glen) about how the softness of hotel pillows generally leaves me feeling restless and sore. Rong’s response was “Oh what a baby, she needs her own pillow.” I could tell right off the bat it was going to be a fun 3 days, in all seriousness.

I have to admit, I was nervous about having to ride 96 miles that day following a slightly tortuous 103 miles the day before. But when Glen checked my tires he immediately realized I was riding at 60psi the entire first day as opposed to the 120psi my tires could handle. Woops. And let me tell you – a little bit of air makes a huge difference! Due to the fact I was scheduled to ride 350 miles total through 3 states (MO, IL, and WI), many people asked me if I was an avid rider. My response? I bought my first road bike when I signed up for the ride in May. Relatively speaking I was close to knowing nothing about my bike, and for this (among other reasons) the Breakthrough Ride support crew was a Godsend.

That first day Rong and I began our 96-mile trek from Springfield, IL towards Peru, IL. It was cool and nice until around 11:30 or so, when the hot sun and little hills kicked in. I was under the impression Illinois was flat! After a lunch break in front of a cute little church with a very friendly congregation (it was Sunday afterall), Rong and I convinced ourselves that the worst of our hills were behind us, only to be faced with a monster of a hill a half-mile down the road. I admit, it must have been harder for Rong with his crazy folding bike to climb that hill than it was for me with my road bike. Best advice for future riders: don’t bother studying the elevation map. It’s best to keep it a surprise.

I met my other mortal enemy at the end of Day 1 for the last 3 miles or so: WIND! Needless to say, I couldn’t wait to be done for the day, and the feeling of accomplishment when I reached the end could not be topped. It felt good to temporarily trade in my pipette for a bike. I treated myself to some fried pickles and a chicken salad stuffed tomato at a local restaurant called Cabin Fever and headed to the hotel Jacuzzi to prepare my muscles for the next day.

Today Rong and I rode from Peru, IL to Freeport, IL (home of the Freeport Pretzels) – a total of 83 miles. After completing nearly 200 miles in the past 2 days this seemed like nothing! When I was training for the ride I imagined I would experience more and more muscle fatigue with each passing day. But strangely I could feel myself riding stronger with time. Luckily, Rong rode behind me the entire time and gave me tips on my form. I will also be forever indebted to Rong for all the beautiful photos he took on the road to capture our journey. He literally attached his camera to his helmet strap and snapped pictures along the way! Melanie joined us with her support van at this point to give Evan a break, and she found Rong’s camera setup to be hilarious.

On this day I opted for a different riding jersey – one that all my wonderful friends/supporters signed before I left for the ride. Their words of inspiration carried me through the day. I also began to view the RV (or the “Pony”) as some sort of drug. It was such a wonderful feeling to see the Pony after a rough 20-mile stretch, and I began to depend on that feeling to break up the monotony of the ride. I mean, corn and soybeans are great and all, but exactly how many fields are there? We did meet a body of water for the first time on our journey this day, and this excited Rong to no end, so we stopped and took plenty of pictures (although we never figured out what body of water it was exactly). Our average speed increased by at least 3mph on this day and we were in Freeport by 2:15. This is when things began to get interesting.

We checked into the Freeport Super 8 Motel (which, by the way, was supposed to be a Holiday Inn Express) and I was assigned to room 115. We all agreed to meet in the lobby for dinner at 5:00. Lucky for me, Footloose was on TV in the meantime. I was slightly annoyed by the footsteps stomping back and forth in the room above me, but I managed to drown them out with the TV. I was ready and in the lobby by 5:05, and because I’m chronically 5-10 minutes late, I didn’t regard this as a big deal. There was no one, however, in the lobby so after waiting for 5 minutes I figured we were meeting later and I simply got the time wrong. When I walked back out at 5:30 both Kyle and Rong were waiting patiently. Apparently they were waiting there since 5:00, so they say. Weird.

After a lovely Italian dinner at Mama Cimino’s Pizza, we returned back to the hotel. The footsteps continued to be bothersome and I was beginning to think something strange was going on. I fell asleep feeling a tad apprehensive about my environment yet excited for the final day of my journey. I began to dream about something coming through my window at me, and I woke up gasping, in a cold sweat, trembling from head to toe, and standing up alongside my bed. And then I saw it – the bedside lamp (on the opposite side of the bed) had been smashed in the middle of the bed! I am not generally a superstitious person, but I firmly believe a ghost wanted me out of room 115. I promptly packed up my things and complied by switching rooms. As I was leaving I could still hear the footsteps moving back and forth above me.

We met downstairs for breakfast the next day and I animatedly told everyone about the last night’s adventure. Amidst my excitement I was hit by bad news. Melanie informed us we had to get to the signing event by 12:30 that day – covering nearly 70 miles plus breaks. It seemed like a tough feat to take on, yet quite doable considering the average speed Rong and I had gotten up to on our bikes. Shortly after departing the haunted Super 8 Motel, we crossed the border to Wisconsin and were instantly met with the real hills. They were beautiful large rolling hills that made the hills previously encountered look like small bumps in the road. The humidity was ridiculously intense too! Rong actually shorted out his camera that was attached to his helmet (don’t tell his wife). SO unfortunate because the scenery in the southwest corner of Wisconsin is absolutely breathtaking. As we rolled along, I began to think we wouldn’t make it in time.

After the first rest stop where Melanie filled my tires and I posed for a picture next to a sign advertising “Wisconsin Fresh Cheese,” I began to see an end in sight. I thought about my whole journey and how much the Alzheimer’s Breakthrough Act means to my family and tears began to well up in my eyes as I rode up and down the hills (not exactly safe, I know). A sense of adenine began to take over like none I’ve felt before and I actually felt lifted up the hills with strength that was not exactly mine. Rong managed to keep up with his folding bike and only complained a little. We were making great time!

We reached the last rest stop 12 miles away from the Capital Building in Madison, where the signing event was to be held. We stopped at a nursery that was apparently the home-sweet-home to thousands of evil mosquitoes. Adequate rest was not possible while being eaten alive, and as Rong commented, “She is obviously not a country girl,” we were on our way towards the capital. We were a few miles away and I was thoroughly exhausted. And then I saw it. Quite possibly the most beautiful sight ever: The Golden Arches. I decided then and there that if Melanie pulled into the McDonald’s, I would be forever indebted to her. Well she not only pulled into the lot and parked the van, she also bought me a large fry and a caramel frappé. Now I am not the biggest fan of fast food chains, but the caramel frappé has changed my life, and the one I drank that day 3 miles away from the finish line was like no other. After convincing Rong to try a french fry dipped in sweet-n-sour sauce (he was a fan!), we were back on the road.

We biked the final 3 miles on the bike lanes of Madison, WI and reached the Capital Building in no time. We rode up the sidewalk amidst the cheering onlookers and TV cameras and I prayed I wouldn’t fall off my bike. There we met riders Michele Ries and Barbara Bendlin who would be heading towards Chicago the following day. After posing for photos and listening to some rousing speeches concerning the great need for Alzheimer’s research funding, there was suddenly an interruption in the program. A woman from the crowd began to adamantly thank the riders with much enthusiasm. With everyone’s attention on her, she went to the microphone and explained with tears in her eyes that she was just diagnosed with a form of dementia, and her husband counted down the days for her so she could come to the signing event and thank us in person. Trying to control my own tears, I hugged her. It was the ultimate reminder of why we researchers are participating in the Alzheimer’s Breakthrough Ride. Please Congress consider the Alzheimer’s Breakthrough Act as an upmost priority, it is absolutely critical to the future of our society.

I would like to send a huge thanks to my wonderful parents, Nancy and Anthony Soscia, who have provided so much love and support over the years, and were the principal motivation for this endeavor. I will never stop fighting for you. Big thanks to my amazing friends and family whose support I appreciated with every single pedal stroke. Much thanks also Cindy Lemere, Sarah Matousek, Oliver Holmes, and Rong Wong for being such fun riding buddies! And especial thanks to my lovely boyfriend Mark, who gave me a pair of custom-made Oakley sunglasses for the ride, with “Breakthrough AD” etched on the lens.

-Stephanie Soscia, Ph.D. Candidate
Department of Anatomy and Neurobiology
Boston University School of Medicine

Thursday, September 2, 2010

Alzheimer's Breakthrough Ride Journal: Saint Louis to Springfield

Just wanted to add to Buck’s blog….. What a wonderful, fantastic, invigorating experience! Thanks, Bruce Lamb for organizing this important event. Sarah Matousek, Oliver Holmes, Stephanie Soscia and I (Team: Boston Bikers) flew to St. Louis on Friday, August 27th in time to meet the Wash U team as they ended their ride at the signing event there. It was great to see familiar faces (Dave and Tracy Holtzman, John Morris, John Cirrito, etc.) and meet The Ride crew (Eric, Evan, Kyle, and Glenn) and numerous volunteers. After re-assembling our bikes (thank you, Eric!), we went sightseeing at the famous arch, also known as the “Gateway to the West”. It was a lot of fun getting to the top by elevator and seeing the city and Mississippi River. The next morning, we had the pleasure of meeting Buck Stinson, of Genworth Financial who, in part, deals with longterm healthcare insurance issues and is an avid cyclist. He kindly treated us to breakfast at the hotel. [Thanks Buck and thanks to the Courtyard Marriott staff for opening for us at 6 am instead of 7 am!]

We headed onto the road north to Springfield just after sunrise. For most of us, this 100+ mile ride (also known as a “century ride”) was the longest bike ride we had ever attempted. We were so excited to get started! We were told it was going to be a flat ride, but the map we were given showed a steady, if small, incline over the first 80 miles. After a small gulp, I decided what the heck. Might as well go as far as possible. After all, we did not have to ride through the desert or across mountains like some of the riders before us! Along the way, we stopped for photo ops such as the one shown here in front of the sign for historic Route 66. The 2 support vans (drivers Kyle and Glenn) kept us safe as we navigated along the route and provided much-needed humor, music and encouragement along the way. The RV (driven by Evan) met us at rest stops where we were pampered with ice water, Gatorade, snacks, bananas, cold wet towels, and a bathroom. Perfect. After lunch, Buck rode ahead while Boston Bikers took our time, resting every 15-20 miles. As we rode through many small towns and rural areas, we got a few cheers and thumbs up. One gas station even posted a special sign welcoming us – Thank You!

Our team stuck together but I will admit I was not sure I could make the whole 103 miles. Kyle was very good at showing up in the van when I would fall behind and blast some funky music to keep me going -- thank you. Thanks to you, too, Oliver, for getting me through that last patch before the final segment! It was everything.

The last 20 miles of the ride was very flat with tall cornfields on either side of the road. The late afternoon sunlight cast a beautiful golden glow on the fields. We rode together into the final meeting place where Evan greeted us by hopping up and down and cheering for us. It was great!

I want to thank my team members: Sarah Matousek and Oliver Holmes (postdocs, BWH) and Stephanie Soscia (graduate student, MGH) for their hard work raising funds, training, and doing the ride. It was truly a pleasure! Stephanie went on to ride for 3 more days and an additional 261 miles to Madison, WI. You are amazing! Great to meet you, Buck – hope to see you in DC. And lastly, a shout-out to all of the friends, family members, neighbors, and co-workers who supported us on this adventure and in the quest to find a way to conquer Alzheimer’s disease – THANK YOU!!

-Cynthia (“Cindy”) Lemere, Ph.D., is an Associate Professor of Neurology at Brigham & Women’s Hospital and Harvard Medical School.

Alzheimer's Breakthrough Ride Journal: Kansas City to Jefferson City

On the eve of the big Alzheimer’s Breakthrough bike ride, I was sequestered with my fellow riders, John Cirrito and Jess Resvito from Washington University, and Ben Timson, from Missouri State University, at the Comfort Inn in Sedalia. Since I hang out at the University of Missouri (in Columbia), we had most of the state covered. I think all of us were excited and a bit nervous, at least I was. Adding to my anxiety was watching Howard Palmer (Washington University) ride in from Kanas City, 110 miles away! While alive, he looked exhausted, and arriving before him was Tim West, also from St. Louis, who had been on the trail for four consecutive days (from Wichita, Kansas to Sedalia, Missouri), over 300 miles! I began to think that maybe I was over my head here.

Passing time by checking my messages I found one from Linda Fisher who lives in Sedalia and who is the author of an edited book of personal stories of persons personally affected by the disease, including one from me. She wanted to come and take pictures, get some quotes, see us off in the morning. I replied, “Sure,” and just in case it was too early for her, I gave her the quotes listed below:
“Linda, you ask why am I doing this? Many reasons:

  • I believe in the cause -- research funding levels for Alzheimer's Disease is dismal given the tragic toll it is taking on individual lives, families, and others. And the cost of care is simply staggering. We are riding to encourage Congress to push funding to $2 Billion and make AD a major priority like other devastating diseases.
  • We must and can find a treatment and cure; science has come a long way and we are on the cusp of major discoveries but need research funding and commitment of the U.S. government to follow-through with groundbreaking research.
  • I am the current President of the Board of the Mid-Missouri Chapter of the Alzheimer's Association, and I want to make a statement to all those who support what we do that we are very serious about finding a cure for this disease and that we are dedicated to helping caregivers who truly live 36-hour days with those who suffer from this cunning, baffling disease.
  • I am 68 years old, have a stent, poor knees, and lousy hearing, but I am functional and I know I can ride this bike 71-miles for this worthwhile cause. I'm looking forward to it.”

Absolutely, these are indeed the reasons why I volunteered to ride one of the segments in this coast-to-coast marathon. I should add that my great aunt that helped raise me died of Alzheimer’s, and I dedicated this ride to her.

Linda did show up the next morning, ate breakfast with us, and followed “The Pony,” our huge RV-like support vehicle and two support vans. In a slight foggy mist in a beautiful park, she took pictures as we prepared for and began pedaling away. It was about 58 degrees and never climbed above 80 the rest of the day, we were so lucky to avoid 100+ degree heat indexes that had characterized our respective training runs during the previous several weeks.

I promised my donors and others that I would keep them posted on this adventure upon which I had embarked, and this is the story. I should first add, however, that I am very grateful for all the generous support. Collectively nearly $2,500 was raised on my behalf, and many signed the online petition in support of the cause. Just in case anyone reading this has not signed the petition, go to and follow the instructions. It will take you less than 30 seconds.

Most likely the oldest and least experienced breakthrough rider, I wondered if my amateurish training had been sufficient to see me through the day. My longest attempts had been 42 and 35 mile outings on the KATY trail, a scenic but flat abandoned railroad path converted to one of the most magnificent Missouri State Parks stretching across the state for more than 200 miles from Clinton to St. Charles, Missouri. Little did I know that riding on the asphalt and concrete back roads of Missouri would in no way be similar to the hardened chat and rock floor of the KATY. Nevertheless, short rides on this and extended street routes to work and back constituted my preparation. My trusty TREK bike with hybrid wheels was going to be another factor that I had not put into the mix. Perhaps I should have trained with more experienced riders; no one this day had tires the size of mine. These were my thoughts as we were taken to the start point on the northern fringe of Sedalia on county road HH.

Within the first two miles, and for the rest of the day, John, Jess, and Ben, easily outdistanced me. Mel’s van became their support vehicle, and Glen’s mine. I caught up at all the rest stops and lunch so we did bond and I felt very much connected to them, but Glen was my companion and life line; having him following along with a yellow light circling atop his van was a buffer from traffic and allowed me to take in the countryside and enjoy the peaceful sojourn beside and along endless soybean and cornfields. Adrenaline must have been pumping because the first three hours passed quickly. Cool temperatures and only occasional hills tested my legs and strength, and I felt great by the time we reached our first rest stop with “The Pony.” We were at the 28-mile mark and all feeling chipper and more confident than at the beginning that we could accomplish our goal. We stopped in Bunceton, a small ghost-like wild-west town, but with loud construction work trying to save one of the dying buildings. Bananas and Gatorade helped fortify us along with peanut butter; chips, high-energy chocolate bars, some oily-looking goo that mimicked hot fudge, and water. Gatorade and water were, however, the most important items on the picnic table. Mel, Evan, and Glen made sure we each drank plenty of it. Returning to my bike I fell off a high step and rolled along the ground drawing a bit of blood below my knee. No one laughed; I guess age has its advantages. We pushed on; I was beginning to feel very much attached to my bike and begin to think of it as my friendly horse. The route was HH to 135 to E and then J followed by 87 to 179; sounds like directions across Los Angeles.

I was particularly good at “calling cows.” I think my mooing imitation tuned them on as they raised their heads in anticipation that I might stop. Dogs were less predictable. Some would wag their tails, others would charge toward me until they felt thwarted by Glen’s “caboose” close behind me. I enjoyed speaking with farmers along the way, one who urged me to stop and help him with fence repair, and another who wanted to know our cause giving a thumb’s up when I yelled, “All for Alzheimer’s research!” In Prairie Home we pedaled by a perfect replica of the “Field of Dreams” baseball field surrounded by corn stalks on all sides. At lunch we all talked about it, but none of us had stopped for a photo opportunity, a real loss. My first of two flat tires occurred soon after. Glen was outstanding repairing both in less than ten minutes, what a gift to know these cycling machines so well. I must admit that repairing the first flat gave me some needed rest as well as the strength to carry on to lunch in Jamestown, Missouri.

“The Pony” was becoming one of the most welcome sights along the route. Equipped with a comfortable dining area, comfortable sofas, refrigerator, toilet, and basically all the comforts of home, it was indeed a highlight of the adventure. At lunch we shared stories. Melanie and Evan were particularly fun to listen to as they shared stories of other riders and experiences since leaving San Francisco more than a month ago. While enjoying the beauty of the mountains and plains, it was the riders about whom they talked the most. It was obvious to us that they too had become consumed with the cause and felt a close chemistry with all of us. Glen had stories too, but this stop he spent repairing my second flat, what a guy. I urged Mel to produce a documentary from all the blogs, their personal journals, and thousands
of photos. She is giving it some serious thought. I am looking forward to seeing all of them in Washington D.C. in September. It will be a great reunion as we make the last 14 miles to the steps of the Capitol to deliver our petitions.

Following our lunch respite, the longest and most welcome of all our stops, we continued down the road, Highway 179 to Jefferson City only 21 miles distant. At this point I knew I would make it, what an exhilarating feeling! And the first 10 miles were fantastic, the first five downhill, and the next relatively easy as we reached Marian Bottoms in close juxtaposition to the Missouri River. Evan was waiting at a river access point with The Pony, and we all celebrated a fun stop skipping rocks across the mile-wide expanse of the “Big Muddy.” Glen remarked that he never realized how big it was, Evan took pictures, and Mel watched as the rest of us feeling full of ourselves, laughed and joked about the journey.

The last five miles, were however, grueling. Hill, hills, and more hills! One of my knees began to throb and I begin to worry about a blown knee, torn ligaments, and an emergency room. Glen and I had dropped pretty far behind at this point, and spent a good five minutes deciding which way to turn at Hwy 179 and County Road Z. The debate allowed my knee to sufficiently recover, but I asked Glen to drive me up three of the remaining four giant hills. I felt no guilt as I coasted down the other side of them and ultimately joined the others just short of reaching our destination. So while I didn’t complete the full 71-72 miles, I did go 68-69 of them; ironically numbers that match my age. Within view of the Fairfield Inn in Jefferson City, all four of us entered the parking lot side-by-side; the Four Musketeers. Like at the end of the three New York City marathons that I have run, I felt a few tears slide down my face. No one saw me, but I was not ashamed.

A shower never felt better, and dinner with Ben Timson who was able to stay the evening, was wonderful. The next morning, the two of us joined a ceremony in the shadow of the Missouri Capitol as a proclamation was read on behalf of Jean Carnahan, Secretary of State. Staff of the Mid-Missouri Chapter of the Alzheimer’s Association had organized the event. All of them were present as well as several Board Members. The event also served as a send-off for the next segment of breakthrough riders, David Holtzman and Varad Hacharya of Washington University. David moved the group as he dedicated his ride to the one-week-ago death of his father from Alzheimer’s Disease. We were all reminded what this is all about.

Thank you all who contributed to and followed this story. It is just one of thousands of stories that have been collected along the ride to Washington. I truly hope it ends in a significant breakthrough in research funding to find a cure for this devastating disease.

-David B. Oliver, PhD
Department of Family and Community Medicine
University of Missouri Interdisciplinary Center on Aging

Location: Chicago, Illinois, United States

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.

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