ALS Fact - Nearly all cases of ALS are considered sporadic, meaning the disorder seems to happen at random with no clearly associated risk factors and no family history. Although family members of people with ALS are at an increased risk for the disorder the overall risk is very low—most won’t develop ALS.
About 10% of all ALS cases are familial (also called inherited or genetic). Mutations (changes) in more than a dozen genes have been found to cause familial ALS.
We had a lovely stay at The Black Elephant Hostel and at least in the room with married couples and the 4 full size bunks, the snoring was kept to a minimum thanks to the anti-snoring bandages that were given out free at the front desk. I’m sorry to report that things didn’t go as smoothly in one of the upstairs rooms with 8 of our riders as our son Charlie wasn’t feeling too well and Doug ended up driving him home in the morning where he tested positive for Covid. This certainly put a damper on things as several of our loved ones are immunocompromised but this is the reality of our world now and everyone, but me… took it in stride and we are now moving on! Luckily I didn’t find out about it until we had arrived at our destination for the day so I was able to concentrate on the ride rather than worrying about who might have been in close contact with Charlie. The host at the hostel was a young man named Scooter. We were told the day before that the coffee wouldn’t be ready until 7:30am however when Scooter came downstairs around 6:45am, I told him I would give him a tip if he started the coffee early. He readily agreed and with his tip, he was thrilled to get one of Joanne Spofford’s blond brownies that she had made for our trip.
We were ready to roll around 9:00am and Tiernan, being a resident of Portland, led us safely out of the city, past beautiful ocean views and safely onto the bike trail. The trail was a welcome relief from the city traffic but we soon found ourselves dodging a few kamikaze chipmunks. Unlike our last Oxford to Boxford ride where several wayward rodents didn’t make it across the trail, I think every chipmunk made it home safely today.
At the first water stop, Kevin made a quick detour to the Goram Bike and Ski shop just outside of Portland and was successful in getting his spoke repaired!
Things seemed to be going smoothly until Barb had another flat. We were getting practice in changing her tire so with only a small delay, we were back in the saddles. Just a mile or two down the road, I dropped my chain - twice in less than a mile! This was really starting to feel like deja vu from yesterday. Luckily we made it to the next water stop at the Main Dinner in Wells and Scott was able to locate another bike shop - the Goram Bike and Ski Shop in Wells, less than a quarter of a mile down the road. Margaret was my buddy as we left the group to try and get another quick repair. The mechanic, Kory, was great and diagnosed a loose screw on the derailer that was causing the chain to have too much slack and thus drop off the cassette. We were back on our bikes in no time and soon joined the paceline of riders as they passed by the shop. I was just riding along enjoying the day and feeling so happy that my bike was back in service when I slowed down at a light and a dark SUV pulled up beside me and a guy yelled out the window, “Hey Dolly, pull over I want to check out one more thing on your bike.” I soon recognized that it was Kory the mechanic so I pulled over at the next intersection. I really couldn’t believe that he would leave his shop and chase me down to fix something else on my bike! He said he had remembered after I had left that my particular back wheel had been recently noted to have an issue that could cause the chain to become slack and he wanted to see if this was in fact the case and possibly make an adjustment. Really! Who does that? We certainly had wonderful service from the Gorham Bike and Ski shops so please check them out if you are in Maine and need some assistance.
I caught up with the other riders and we gradually made our way through Ogunquit, Cape Neddick, and York to our final water stop at Nubble Light. In planning the route, this was a must for me as Nubble has such special meaning due to multiple yearly training rides up the coast to Nubble Light. It did not disappoint. Doug picked up our dear friend Ellen and met us at the stop. Ellen came with cow bells to cheer us on and Mardi Gras beads to bedazzle us for the rest of the trip. While we were refueling and mingling, a lovely elderly couple caught on to our mission and handed Al a donation for ALS One! As we pedaled out to our final destination, Ellen and Doug set off to make the final preparations for our dinner at Ellen’s beautiful home on Cape Neddick.
It was only a few more miles to the Microtel but several of us wanted to stop for an ice cream along Long Sands beach. We had a lovely encounter with the server at the shop, who was so impressed with what we were doing she came out and wanted to take our photo for their social media pages. It was at this stop that I realized I had several calls from my friend Claudia who was meeting us at Ellen’s house that evening. She finally left a voice mail with a bit of a frantic message to please call her. It was then after reaching her that I learned that Charlie had tested positive for Covid. So many implications began to run through my mind and after several conversations with participates and supporters, I made the decision that we would not be staying at Ellen’s house as planned but rather we all needed to get rooms at the Microtel. Luckily, they were able to accommodate us and we decided to keep our plans for dinner at Ellen’s house as we would be eating outside.
As usual, Ellen went all out to host Team Hope. She is an amazingly compassionate and gracious supporter of our Team and had a wonderful spread of appetizers, several different types of lasagna, several large salads and incredibly pastries for dessert! Everyone filled themselves on this delicious meal as we continued to build our community through laughter and story telling. As night fall was approaching, we quickly cleanup up as much as we could and returned to the Microtel for the night.
We will be up bright and early and will be joined by four more riding friends tomorrow - Claudia, Susan, Linda and Matt. Wheels up at 9:00!
Our fundraising continues to amaze us as we have now passed $36,000!!! Thank you to friends, family and strangers who continue to support our mission. We are so very grateful!
💙💚
Dolly