My Activity Tracking
2,217
kms
Diagnosis and Prognosis
I received an email today that I want to share. I didn't ask for permission so no names are involved.A friend wrote to tell me about his wife, Lacey*. She is 50 years old. With symptoms and no answers from the local doctors, they went to a major clinic in a major city.
"Lacey called on a Tuesday. They had her in a tele -appt that Friday, and scheduled her the following Tuesday.
"There, they completed testing. By the time we met with the neurologist, they already had all the test results in hand. The neuro has 26 years experience and this is all he does. Met with him for 2 hours. He diagnosed her with Primary Progressive MS.
"With recessive recurring MS, there are 14 different medications that can be combined/titrated etc etc. As you are aware, this is only to “slow down” the disease. No cure. Once you lose function, there is no repair.
"With PPMS (it is only 7 to 14percent of the cases)…there is only one…Ocrevus. Two infusions a year. Cost is 75,027.00. Thank God for insurance!! It has a 39% rate of effectiveness. On the good side of things, it appears to have stopped any additional lesions ( She has a huge C-3 and one in the middle right side of her brain) so far.
"On the not so good side, the existing lesions are maturing and this increases her symptoms."
I am gutted by Lacey's diagnosis. Each diagnosis is a gut punch but it hurts when it is close to home and we have been friends for 40 years.
Riding for a cure -- trying to make a difference!
*Not her real name but is the real name of my favorite actress.
Mountain Training Gets Serious
This time is different. I am 14 years older and the mountain riding will be more challenging. So I'm in the mountains. At least twice a week now.
On Sunday I rode the BlueRidger with my friend Tim. On Tuesday I went to Skyline Drive (photo) and rode from Panorama to Big Meadows and back. On Sunday I will lead another group ride on the BlueRidger, this time turning it into a mountain metric century. The next day I will be in Altoona for a double ascent of Horseshoe Curve in Altoona.
I have a calendar full of mountain rides. I am inviting friends and strangers to ride with me but mostly it's me. All alone. But I need climbing.
A trip to Florida won't help but I will be able to add another double ascent of Horseshoe Curve when I return towards the end of April. Mountains. Lots of mounatins.
Meet the Steed
I was looking for a climbing bike to take with me on my next challenge. While at my local bike shop, Richard showed me this Trek Emonda which had been traded in.
The Emonda is Trek's lightest bike and is built for climbing. I inspected it and wondered if it could suit my needs. I was wary at first because I never bought a used bike before.
Richard explained that the original owner had used it for racing. The wheels were replaced with Mavic wheels. While in possession of the shop, they had an accident with it and cracked the frame. Trek honored the warranty and sent a new frame. I didn't want a bike with a racing setup but a climbing one and we agreed to swap out the components (drive train). Of course, I installed my own pedals. And a new saddle.
My Domane is generally suited for climbing although its geometry is better at long-distance comfort riding. Having experienced the angst of British Airways losing my bike at Heathrow Airport, I didn't want to travel with it to Europe this year.
One other difference. This is a 2024 frame that is not sold to the public. The original bike, 2016, came with rim brakes. All new bikes are sold with disc brakes that provide better stopping power but also weigh more. This bike is a limited edition replacement only for warranty swaps. So it's a bit lighter than a 2024 model that comes with disc brakes. I will only regret this choice if I have to descend on wet roads.
New handle. New head. Same ax. At least the handlebars are original. I think.
Not the week I hoped for
I came to Hillsboro, Va. for a week of grand dog and grandrat sitting. (True). I was hoping for a week of good rides including at least one mountain ride.I looked at the calendar and weather and decided that Tuesday would be a 100k mountain ride from Marshall’s, Md. to PennMar, Pa. On Monday I waited until it warmed up and went to Thurmont, Md. in the afternoon. It was windy but Frederick Co., Maryland is one of my favorite places to ride. Good pavement, light traffic, and generally respectful drivers.
I visited two covered bridges. And found one detour that was unexpected.
I woke up yesterday to ride the route we call Happy Happy Pain Pain. I turned on my computer and it was dead. Ugh. My Whoop recovery was only 30% and I was warned not to overstrain. Thus the day was spent for computer repair and a short ride in Reston.
And today was a rainout. I will use today as more recovery and head to my happy place tomorrow - Horseshoe Curve in Altoona, Pa.
Thanks everyone for the support!
CYKELNERVEN
I have suspended my Facebook Bike and Beg CAMPAIGN to raise money for the MS International Fund (MSIF). I will still gladly accept donations up until June 5th when I start the event in France but will no longer solicit on Facebook.
We are successful. I've had 42 sponsors and I know that number will grow. Every sponsor has a story. My sponsors are Work colleagues, Cousins (Laumaster, Sherry, McDowell lines), Cycling (Roosters, MWARBH, PPTC, RTR, TBL), Machatunim, Soccer (Referees, Coaches, Players), Classmates (LVHS), In-laws, YFU. And the loneliest category, Found Unconscious by a Passerby in Ohio.
Each time I see a new name on the sponsor list I am humbled. Some are affected by MS. Others, thankfully, are not, but all want to DO GOOD.
FWIW, I lead all Cykelnerven team members in fundraising. There is no prize for raising the most. We all do what we can.
There are great stories behind some of our connections. Just yesterday, Alexa popped in. In 2012 I went to Mt. Washington for the Hillclimb. I wasn’t feeling it. Jacob, 8, had died two weeks earlier. I wasn’t sure I could complete the climb. I met this family from Connecticut. They wondered why I wore FUCANCER. I shared Jake’s story. They chalked the finishing climb with my name and FUCANCER. I retired that day. Alexa and her brother had hiked to the summit and asked if they rode the hillclimb the next year if I would return and ride with them. I unretired. I rode in 2013 and Alexa finished second in her age group.
In Luxembourg with the Rooster Racing group five years ago, we had to DO GOOD before we would RIDE HARD. We each had to raise money for our charity. I chose the National MS Society. Although we had a dozen riders and rode 50 miles in Holland, no one asked why, on Father's Day I had the name Bethany on my calf.
That evening at our Team Meeting, Jambo called me out and asked me to tell the story of my calf. The obvious, being Father's Day Bethany was the one who made me a father (the first time) but I was in Luxembourg with this team because I had raised money to fight MS. I don’t know if I ever told him how much I appreciated him calling me out in front of the group to tell my story. Thanks Jambo!
Then there is one of my soccer players. I coached this group of really awesome girls for a few years around 25 years ago and a couple of them still call me coach. My heart melts each time they do. My "kids" are no longer kids and one is also affected by MS. She is one of my sponsors. Her donation means so much and she can always call me coach.
I can do a story about every donor, except for the one Anonymous donor. I won’t but I will thank each personally. I will be riding for those with MS - and together we will make a difference.
Merci!!
Blown Away
I am blown away by the support you all have given me. When I signed up I hesitated greatly. I have been doing charity rides since 2009 including MS rides since 2016. My network of friends and family rightfully has giving fatigue.
But the first donor is a frequent donor and immediately donated on February 20 when I rolled out the campaign. I have a required goal - €2400 (approximately $2600. That was met on Match 15.
I mailed out 85 cards asking for donations. A number of sponsors, almost half, donated without a card. But 20 of the 85 responded and I expect that many more will. Therefore I am raising my goal above the required amount to a pretty cool $5000. Every dollar, every Euro, makes a difference.
I have the coolest friends with the biggest hearts in the world.
Mountain Training
It is here. Time to head to the mountains so I can meet this challenge. I've been riding all winter but it's not the same. It's generally too cold for four-hour efforts and mountain roads aren't a normal part of my riding.
On December 29 I went to Altoona and rode up Horseshoe Curve. I actually rode well that day and that is a major climb. But it's an 8-mile climb as part of an 18-mile loop. My training needed to include longer miles and longer climbs.
The BlueRidger. A classic ride out of Marshall.
I found the new commuter lot and headed north into a wind which was probably a heavy cross-wind. The temperature started in the low 60s but got to 70. I sucked.
I struggled with the winds and the climbs. My time of 4:30 was probably my worst time ever on this route. But I have to think this is still winter. I plan on doing this ride once a week until I depart for France. It can only get better from here.
Jim the Burger Guy
In a very heavy wind, I rode to Manassas and stopped at Fosters Grille. My bike was leaning up against the building but I chose to eat inside so my food didn't blow away. I chose a hightop next to a window so I could observe my bike.
A man and woman just finished up at the table next to mine. He looked at my bike and asked a couple of questions. Then he told me that he has a Specialized but hasn't ridden in years because he has MS.
He is walking and one might not otherwise know he has MS. He quit medications when he turned 65 and Medicare wanted $8000/month for the meds.
I told Jim that my daughter has MS. He asked about her, her age, her mobility, and her meds. And I told him I was doing an MS ride in June. In France.
I gave him one of my cards so he could check it out. I wasn't trolling for dollars but I hope he is inspired by the challenge I am undertaking on behalf of all who are affected by MS.
I gave him one of my cards so he could check it out. I wasn't trolling for dollars but I hope he is inspired by the challenge I am undertaking on behalf of all who are affected by MS.
Jim the Burger Guy - I'll be thinking of you.
Truly Humbled
My wife asked me this morning if I checked the total for my MS fundraising today. I told her that I hadn’t because I was getting frustrated checking it frequently since often there would be no new donations. I prefer to wait and recap on Giving Tuesday.
She said I had a major donation. Actually, I had two. And indeed I did. I don’t like this asking part but have more thank you cards to mail and I know more will be coming. I like thank you cards.
The Cykelnerven is a grueling course but a huge motivator for me will me thinking and carrying the names of those affected with MS. I watched the Paris-Nice race today with an eye on the last climb knowing I will be climbing that in three months. Gulp.
“By completing Cykelnerven and raising funds, I hope we can be a beacon of hope for anyone affected by MS.” - Peer Baneke, CEO, MSIF
Every donation humbles me. Some are from people affected by MS, either their own fight or a close family member. Some are from people who have no connection to MS but want to Do Good. Every donation carries a story and I am extremely thankful for so many friends with big hearts.
I won't be the oldest
I share a message from MSIF CEO Peer Baneke. His message could be my message although it is more eloquent than anything I can author.
Also, he's a tiny bit older than me and I willingly cede the title of the oldest rider to Peer.
___
"This year I will be turning 70 and will
retire as CEO of MS International Federation (MSIF). To mark these
personal milestones, I will be loading my bike onto my car and joining a
group of passionate riders to complete ‘Cykelnerven’, a four-day
cycling challenge, tackling some of the toughest mountains of this
year’s Tour de France.
"We’ll all be raising funds to support MSIF and its aim to bring the world together to end MS. I can’t think of a better farewell gift to ask my friends, colleagues, and family for their sponsorship.
"This is a gruelling course, but a huge motivator for me will be thinking of people such as my father, who had MS, and of the daily challenges they face. By completing Cykelnerven and raising funds, I hope that we can be a beacon of hope for anyone affected by MS." - Peer Baneke (CEO MSIF)
"We’ll all be raising funds to support MSIF and its aim to bring the world together to end MS. I can’t think of a better farewell gift to ask my friends, colleagues, and family for their sponsorship.
"This is a gruelling course, but a huge motivator for me will be thinking of people such as my father, who had MS, and of the daily challenges they face. By completing Cykelnerven and raising funds, I hope that we can be a beacon of hope for anyone affected by MS." - Peer Baneke (CEO MSIF)
Team Meeting #1
We had our first team meeting today via Teams (which looks like Zoom but it's not). It was great to see some of the team. I estimate that about half jumped on. We covered training (lots), got an overview of where the money goes to help those with MS, discussed fundraising, and started looking at the logistics of the trip. In addition there was one adjustment made to our cycling route for Day 2.
Maybe more than anything, this was a "now it's real" moment. I was glad to see in training the preferred method is outside. I feel just a tiny bit guilty that I can't ever join in their Zwift training sessions because I don't have an indoor trainer. I just buy warmer clothes.
The first of the postcards started hitting mailboxes today. There were two almost immediate donations and I was prepared for an onslaught that did not happen. We have time. We have time is what I need to tell myself. But for the three people who responded today - thanks! It means a lot.
Hello Anonymous
My page got a boost today and when I went to see who donated I discovered that it was “Anonymous.” I like this mystery.I shouldn’t spend any time guessing so I won’t. I know the donor is either someone I know or someone I don’t know.
I like the idea of a complete stranger donating to this cause. Many donations will come to me because the donor is a friend or family and they want to help me. Indeed, I am building a campaign based on friends helping me. But a stranger may just want to be helping the cause and that is pure.
It got me wondering though about donating anonymously. I went to Lifehacker . Com. They list some reasons when to donate anonymously
Controversial causes
To avoid being perceived as rich
To protect your privacy
To avoid offending family members
Ultimately, I don’t care about the reason someone chose to be anonymous. I like it. It’s sort of cool. And it saves me sending a thank you card in the mail although I still used my form to send a return email.
Strangers welcome. Anonymous friends - welcome. All donations are greatly appreciated. Thank you Anonymous.
Stepping up the Bike and Beg game
The first two weeks of fundraising brought in $225. That's not enough. My fundraising has been passive at this point. A post on Facebook and some people responded.
Now it gets uncomfortable. I am starting to ask people directly. I have been addressing these nice cards from VistaPrint. With $0.53 postage I am paying about $1.50 per request Thrity cards were mailed today. I will be addressing 10 per day until my next training trip to Florida. It's not as uncomfortable if you donate before you receive a card but please donate regardless of the method. :)
Fund Raising Week 1
At the end of the first week, I am 10% of the way there. I was hoping for more, i.e., a big boost to start. But it all helps.My sponsors and that is what each of you are, a sponsor, range from the Old Standby to Brand New Surprise!! Both are really cool. We have cyclists and people battling MS. Starting next week I will be scoreboarding the amounts and maybe a bit of a challenge, school vs school, cousin vs cousin, will be a fund way to encourage more.
We also got an email today looking for our cycling kit sizes. Game on!
Where are my legs?
While my team had a session on Zwift today I opted to ride outside. For a 100-km ride. I started with the temperature at 47 (8 C) and rose to 68 (20 C).
My body wasn't having it. When I am in riding shape I routinely knock off Metric Centuries (100 km or 62 miles). I was sluggish. Rode into a strong wind coming back and was pretty much drained.
The good news is that I rode 100 km. The bad news is this shows I have a lot of training to do before I will be ready to ride in the Alps. Carry on!
Is my life purpose just to bike and beg?
I am very shaken this morning. From the time I was diagnosed, I asked the question why do some people survive and some people do not. Of course, I asked the question everyone asks when they are diagnosed, would I survive? And I survived - this year will be my 15th Cancerversary.Since 2009, I have used my cycling to raise funds for cancer organizations, and since 2016, MS organizations as well. Surely my life is more than a cancer and MS fundraiser on two wheels. Isn’t it?
Two days ago I was reminded of 13-year-old Alex on what should have been his 22nd birthday. He was an active cyclist. I met him in Oregon and hoped we could ride but he was recovering from his fourth brain cancer surgery. I promised him I would come back always hoping, even with the false belief that we would ride. Instead, I went to his memorial service. I kept my word.
Cancer, curse words, and donuts.
I enjoyed weekly lunches with Joe P. until he was too sick to attend. Always fighting.
My Cousin Kay, was the most badass person I knew. I miss her dearly and she should still be with us. Her last phone call to me was asking me to promise to take her to the French Alps to experience those climbs, and then she added, "After I get rid of that stupid tumor." I will be riding in those French Alps in June but without my cousin.
I had a disc golf date with a good friend scheduled in a couple of weeks. Today he canceled opting for hospice and morphine instead. WHY? Why do some survive and others do not? Why the *%*$ am I still here? It can’t be just to bike and beg. Ugh.
The news today hit me like a ton of bricks. I am reeling.
I don't feel like riding. I don't feel like fundraising.
My Affinity with France
My first exposure to France started in eighth grade when I started French I. I lasted perhaps two weeks before switching classes. I don't know why it didn't take and I certainly would like a do-over on that.
In the early 2000s we finally had bike racing on TV. Well, as long as it was the Tour de France because Lance Armstrong and the US Postal Cycling team were killing it! It took the organization many years to understand how to televise the TdF. They finally got it right. Show the beautiful country of France and every once in a while show a bike race that was taking place as well.
The scenery was stunning. Those mountain climbs became seared in my memory. I wondered if I could ever make it up one of those iconic climbs. There was the Col du Tourmalet, Mont Ventoux, and the photogenic L'Alpe d'Huez. There was also the Col du Galibier.
Going to France and riding these climbs never quite made it to a bucket list. Until cancer. When I was diagnosed with prostate cancer in 2009 life smacked me in the face. All those things that I wanted to do or should do before I die flashed before me. And there goes the Tour de France.
My cancer journey began with me researching the heck out of my diagnosis. I had five "second" opinions. And I signed up for a trip to France.
The trip to France for the next year (2010) was to be my recovery goal. In my darkest days of recovery, it would be the carrot at the end of the stick. I booked a trip with Trek Travel which offered one week of riding in France while following the TdF. It was the best of both worlds.
We watched and climbed two stages of the Col du Tourmalet (almost), saw Mark Cavendish win a sprint into Bourdeaux, saw the time trial, and watched the finish in Paris. Our first day of riding had us climb to La Mongie, a ski village 4k from the summit of the Tourmalet. On my climb, I met a young man, Adrian, and we adopted him for the day.
Adrian and I kept in touch and in 2011, I went back to France to ride with Adrian. We climbed the Tourmalet and then said goodbye as I explored more of France. I climbed Mont Ventoux and Alpe d'Huez. But on July 19, 2011, I was turned back at the Col du Galibier by 5" of snow. Oh well. It would have been great but I made a prudent decision not to die on the mountain that day.
In 2014 I did my second Trek Travel trip. This one was to the Dolomites in Italy. After the trip, I went to Switzerland to visit some friends. I went to Geneva for a day, rented a bike, and just like that, I was riding in France again.
In 2017 I did a solo ride across the Swiss Alps. And I met my friend, Ben, and we did a three-country ride to include Germany and France. My travels in 2019 took me to Luxembourg and France was literally a stone's throw away (if you had a really strong arm). Last year was another Luxembourg trip. As soon as I built my bike I rode to, you guessed it, France.
So I have ridden in France six times. This trip will make seven. Riding in the countryside in France is special. This is a cycling country although I will entertain arguments that Belgium and The Netherlands are even more cycle-centric. But every driver is a cyclist. Road rage is virtually non-existent. The beauty in the mountains is stunning.
I never planned to head back to the Alps. But as things worked out this year I will be. Now have to get into shape.
I never planned to head back to the Alps. But as things worked out this year I will be. Now have to get into shape.
Perimeter Nokesville
The morning temperatures remain cold as a reminder we are still in winter. Virginia winters are mild, with little snow and generally only freezing temperatures at night. But those are slow to warm up.
It was a beautiful morning, but I didn't feel like dressing for a winter ride. I waited until noon and wasn't sure where I would go and how long I would be riding. My destination was Bastable Mill Road but when I got to Nokesville Park I stopped and decided to ride from there.
Nokesville gives us lightly traveled roads. Maybe not country roads like in Fauquier County but close enough. I settled on something I called Perimeter Nokesville. Leaving from the park I would ride the farthest roads on the perimeter.
It was a nice ride and I can see this being a double perimeter ride, although I would probably ride it once and then do some of the interior connecting roads.
The Cykelnerven group started hitting me up as a destination training backyard. But I don't see scheduling some rides as opposed to making them pop-up rides depending on the weather.
Ok miles today but may I be riding a metric tomorrow.
Official Day 1
A Facebook post yesterday kicked off the campaign. I offered to match the highest donation on Day 1 but being late in the day I will call yesterday Day 0. There is some money in there so I will be matching some amount.As for riding, I bonked. It was only 50 km (31 miles) and often I could ride that without carrying nutrition with me. I meant to grab a gel and didn't. I headed out to Leesbugr on the W&OD. It was chilly, 45 degrees which must be 7.5C and had a favorable cross-tail wind but didn't realize it. When I turned to go back I realized it. My effort was much greater than the result. The good thing for me is that I do have time to get into bike shape but this wasn't a great training day.
However, I also went over 1,000 miles for the year which I believe is the quickest I have ever done that. Upon reflection, in 2019, I reached 1,000 one day sooner. Well, gotta do better.
The Campaign Begins
My dad was a United Methodist pastor for 40+ years. The thing he hated most was the one time a year he had to push for donations. I got this trait from him. I hate asking for money but we both knew it had to be done.
Tonight I kicked off my Facebook campaign. I have more than 1,300 friends, yes some are dead, but just $2 per Facebook friend, and I would reach my goal.
The first incentive I offered was for everyone who donates at least $100 I will put their name on a Stem Cap on my bike (see photo of the one that is there now). The second one is a match - I will match the highest amount donated by tomorrow at midnight.
Here we go!
Here we go!
I'm fundraising for a world without MS
Thanks for coming to my page! Starting June 5th, I will be taking part in one of the world's toughest cycling challenges, the Cykelnerven.Cykelnerven is famed as Europe’s most unique and challenging charity cycling event. I'll be riding 500km (300 miles) over the toughest mountain climbs used in this year’s Tour de France.
I'm taking part in the Cykelnerven to raise money for research and support for people living with Multiple Sclerosis worldwide. It is personal as we have MS in our family. I would love to see an MS cure in my lifetime.
Please join me in the fight against MS by contributing to my page. We are moving closer to a world without MS. Let's help make that come faster.
Thank you for your support! Every donation matters.
Thank you to my Sponsors
$41.60
Jamie Higgins
$31.20
Janice Smiley
$515
Bryan Snow
We love you.
$67.60
Cheryl Weyant
$50
Vicki Lacapria
Keep it going Barry! You are an inspiration!
$52
Jenny Clegg
$156
Edward Kestel
Beat MS
$52
Orange Pinarello
$36.40
Terri Elms
Thank you Barry for all you do to raise awareness and support for MS! Good luck!
$135.20
Kirby And Cheri
$67.60
Brian Bohnsack
$30
Jaime Sherry
Best wishes, Cuz!!
$250
Cindy Rouse
You are such an inspiration to so many. Thank you for Doing Good and Riding Hard.
$50
Makeem Hill
$26
Vincent Amodeo
$52
Janet
$67.60
Vic & Alison
Thank you for what you do!
$52
Gloria And Bill Richards
We just got home from a five-week stay in Florida and picked up your note card with the mail. Bill and I are glad to help our cousin in this worthy endeavor. Gloria
$52
Sandra Macgurn
Best wishes for the ride of your life at Cykelnerven 2024
$20.80
Ken Sherry
Good luck!
$67.60
The Greyhound Resort, Llc
Hi Barry — A Donation from the Greyhounds at the Greyhound Resort -Woof!
$26
Mark & Patti
Best of Luck and Thank You Barry for all you do!
$31.20
Anonymous
Blessed wishes. Enjoy and what a great cause!
$52
James Jones
$52
Paul Sullenberger
$50
Bobbie Vucelich
Go for it Barry!!
$20.80
Kim Woodside
Good luck Barry!
$50
Dan
Barry, We wish you the best in your 7th ride in France and conquering the Gabilier! We appreciate your commitment to rid the world of MS. Dan and Kay
$104
Kimber Broughton
$25
'chele
$104
James Ray
Thank you Barry for your steadfast example DO RIDE LIVE
$100
Alonzo Baxter
Have a great trip, Barry Alonzo and Nicole
$75
Barry Sherry
For my daughter. For my grandsons. For my family.
$31.20
Jim Bledsoe
Barry, I can do this w/o working up a sweat, unlike your contribution. I admire your determination and perseverance.
$220
Christine Currie
Shut up, legs!
$75
Elaine And Alan
Keep fighting Barry—thanks for your energy and dedication.
$515
John Andre
At least one of us is getting proper exercise ... and for a most worthy purpose. :-)
$52
Terrance Moran
$67.60
Kathy Brown
My pleasure!!!
$52
Renee Kenney
You got this.
$52
Anonymous
$52
Alexa Gubinski
$26
Gloria Lasley
$52
Joe Studer
$50
Marie Metts
$31.20
Michele Haalman
$31.20
Margaret O'rourke
Good luck to a champion!
$26
Monica Dean
So sorry to hear about Bethany’s MS diagnosis. I wasn’t aware of that. Good luck on your ride!!!
$260
Mack The Knife
I will always donate to a QR code!
$208
Patricia S Lawmaster
$20.80
Mary Solberg
Best of luck to you, Barry! You have a big heart and are an inspiration! Keep moving forward!!!!! “Benson”
$50
Dave Freeman
$31.20
Kristi Wallace
Thank you for all that you do!!
I hope you have a great time in France and hopefully, the airline won't lose your bike! I'm looking forward to hearing about your ride!