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Daily Message
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| Monday
Day 36, Part 1 - Border War on HD - Venice - Huntington Beach CA First day of the last week of riding! What a beautiful day it is. No more long sleeves, we're all working on our tans now. Got to Jan and Henry's home at about 7:15 am. Jan was able to arrange her schedule and ride with us this am for about 3.5 miles, then had to get back to Henry. They are truly wonderful people. We skirted Marina Del Rey, the largest man made harbor in the world. We also passed Dockweiler Hang Gliding Center considered by many to be the birthplace of modern hang gliding. We passed by the LA Airport and about every 3 minutes we saw a plane take off; interesting but noisy (in went the ear plugs). Another interesting sight on the beach were all the beach camps for kids. There were volleyball, surfing, & ocean swimming camps and combination camps that included all of the above. The early morning ride was on a bike path that stretched from Venice Beach all the way to Redondo Beach and it was awesome. We met a lady named Laurie Dolan who was kind enough to show us the best exit from the bike path. Laurie is a massage therapist and a bicycling enthusiast. She and her husband are currently in training for a ride in Nova Scotia later this year. After leaving the bike path we wound our way thru the Palos Verdes, Lomita, and the rolling hills areas to a sweet spot in the Harbor Park for lunch. And what a lunch. Dede brought the last of the pasta salad from Sunday's lunch as well as Brie Cheese and sesame crackers, YUM!!! There were also chunks of sweet and juicy watermelon, grapes, banana nut cranberry bread, and cheetos (the puffy kind). We had water, soda, or Gatorade to choose from for a beverage. For dessert Dede made some peanut butter and butterscotch rice crispie treats, incredible! After lunch we had one of the sweetest surprises of the entire trip. Dede had gone ahead about 5 miles and was waiting for us to catch up to her. She had parked in a vacant lot and was sitting in the car when a young man approached the car and asked her "When are they going to get here?" Dede was puzzled and asked the young man to repeat his question. She was still a little unsure of what he was talking about and asked if she knew him. He then said that his mother's name was on the t-shirt (from the 2000 ride)! Dede invited the young man, Ken Hansen Jr. to sit with her and wait until we got there. Ken's mom Georgeen Hansen has HD and is in a nursing home in New York state. Ken's father, who has been following the ride, told him that we would be coming his way and to keep a lookout. We got off the bikes and chatted for a while with Ken; he really made our day! When we left him he headed home a building along our route, and cheered us on as we rounded the corner in front of it; it was wonderful to meet and visit with him. From here, in Long Beach, it was an easy ride into Huntington Beach to the Faith Lutheran Church on Chapel Street. The Tiedgen's, Gary and Barbara, were kind enough to take us in for the evening. Dede went to stay with her daughter Kim and family in Yorba Linda. Kim had come to town to bring a bike rack for our use on Wednesday of this week. Unfortunately the rack did not pan out for us, but it was great meeting Kim and her daughter Kaleigh. After showering, we took Dede and Kim out to dinner at Sunny's Family Style Restaurant (Gary and Barb had choir and worship team rehearsals at church). The meals were good and the portions were huge! End part 1 Day 36, Part 2 - Border War on HD - Venice - Huntington Beach CA We all had salad with our dinners. The greens were crisp and the cherry tomatoes were very good. Marie had the roast turkey dinner. There were juicy slices of roast turkey with a bread stuffing and white/yellow gravy. There was also a baked sweet potato with butter. Because the portions were so huge Marie had a doggie box of turkey and stuffing and the sweet potato that Dede took to Kim's husband Scott. I had the country-fried steak for dinner. The steak was very good with nice spicy white gravy over it. My meal came with bar-b-que baked beans, real (not canned) creamed corn, and a baked sweet potato with whipped butter. The beans and potato were also in doggie boxes when we left. Charlotte had liver and onions for dinner. She also had the creamed corn, and sweet potato with her meal. She took her potato and a small amount of the liver and onions in her doggie box. Dede had the Bakery with soup and salad. This consisted of a large salad, a loaf of warm fresh black bread with whipped butter, and a huge bowl of Potato Leek soup. It was delicious. Kim had the chicken Parmesan for her dinner. The chicken was smothered in marinara sauce and melted cheese. She also got spaghetti with sauce as part of her meal and two thick slices of garlic bread. Another universal of the meal was a small portion of rice pudding with whipped cream and cinnamon for dessert. It was as good as any I had ever eaten. After dinner Dede dropped Marie, Charlotte, and myself off at the Tiedgens. They were still at church so we got e-mails completed and the route laid out for tomorrow. Marie's pocket mail computer has developed a problem. It won't send and receive, so we have had to change how the message is distributed. That is what has caused somewhat of a delay in message distribution. We will be using Amanda's pocket mail will for the remainder of the ride. Thank God that this happened now and not at the beginning of the ride. We were able to visit for a short time with Gary and Barb before we turned in at about 10 pm. We want to be on the road by 6 am. We think it is going to be about a 60-mile day. Today's mileage - 49 Cumulative mileage - 1444 Road Change Report - 26 cents With much love from the road, Charlotte, Marie, Amanda, and Dede Day 37 - Border War on HD - Huntington Beach - Oceanside CA Glorious morning for riding today. The sun was just peeking out when we started riding at 6:15 this morning. We said good-bye to Gary and Barb Tiedgen. They are wonderful people. Gary got on the computer this morning and printed us an excellent map of the area surrounding Immanuel Lutheran Church in Oceanside, where we will be staying tonight. We made very good time today riding a little over 20 miles by 10:30. We came straight down Hwy 1 until we reached Dana Point. We passed several State Beach Parks with sleepy dog walkers. We also passed the Talbert Marsh Wetlands outside of Huntington Beach and the Crystal Cove State Beach just South of Newport Beach. It is interesting how all of the towns run together with very little break between them. We were passed by a peleton of bicycle riders, a group of runners, and a lone sculler on a very still canal somewhere near Laguna Beach. Laguna Beach was also our first pit stop for the day. We used the cell phone to call Dede to get a handle on where she was (she stayed with her daughter Kim last night). Dede was at the grocery store in Newport Beach, having picked up our gear from the Tiegden's home after we left. We were going to meet up with her at the Southern end of Laguna Beach. We kept riding and found ourselves in Dana Point. We still had not seen Dede at this point so we called her again. We haven't figured this out yet but somehow she had gotten in front of us. She didn't see us and we didn't see her. At that time she was at the Capistrano Beach State Park so we rode to meet her. It was still a little early but we decided to have lunch there at the park (breakfast was 4 hours ago). Dede brought turkey and chicken salads with ranch dressing and a container of cottage cheese for lunch. There was also crackers and a small amount of the Brie cheese left. We also had watermelon, peaches, and grapes. Beverages today were water, Gatorade, or raspberry Snapple iced tea. After lunch we headed for San Clemente and what looked like a very confusing stretch of road. We lucked out and found an easy to follow path through a residential area that was really fun to ride, like a roller coaster for bikes. We also met up with some old acquaintances on the road today; Rick Schiffmann and Maria Hermanussen. This was the couple that gave us the good tip coming out of Santa Barbara. They had their friend Scott riding with them today. They will make Tijuana tomorrow. The afternoon was heating up and we were slowing down when we hit Camp Pendleton. We rode thru the San Onofre State Beach past the San Onofre Nuclear Power Plant and came on base at a back gate. We were coming out of a small tunnel under the highway when we were confronted with a Marine Corp Humvee. The funny part was that it had a sign on the front that said "Student Driver." We chuckled and gave them a wide berth. The ride thru the base was uneventful except for a ceremony (or possibly rehearsal) of some kind that had the troops in formation and what looked like an inspection going on. After leaving the base we rode straight into Oceanside and headed toward the church. Marie and I got sidetracked by a Baskin and Robbins and each got a cone. I had a scoop of Pistachio with almonds and a scoop of rainbow swirl sherbet while Marie had one scoop of Baseball Nut (vanilla w/raspberry swirls & cashews. We got to the church and it was wonderful. For dinner we had boxed Red Barron Supreme pizza. We also had salad with vine ripe tomatoes. After dinner it was time to hit the hay. We'll be on the road very early again tommorrow (6am). Today's mileage - 55 Cumulative mileage - 1499 Road change Report - $1.34 With love from the road, Charlotte, Marie, Amanda, & Dede Day 38 - Border War on HD - Oceanside - San Diego CA What a huge day we had today! Busy & on the go from 4am until 10pm and the entire time we were thanking God for the privileges He had given us. Yes, our day did start at o'dark thirty (4am). We were on the road by 5 pedaling our way toward breakfast in Leucadia at the beach condo of Marie's sister Meg and her husband Tony. We rode into Leucadia at 6 & were greeted by cheers and whistles from Meg and Dede. We passed Tony on the road when he was out for his morning run. Breakfast consisted of sweet cantaloupe and other mixed fruits. There was also cereal, milk, and/or orange juice. It was wonderful. After breakfast, we headed South again toward San Diego at about 7am. We were very fortunate that Dede was with us. The directions that given in maps used by cyclists are very different than those on traditional maps. Hills, width of road shoulder, traffic volume, and other factors are considered when the routes for these maps are created. Today's directions were a perfect example. We were routed onto about 15 different streets. Dede was able to ride ahead in her car and scope out a better route for us than the one designated in our Adventure Cycling maps; she really saved the day.! The last major hill of Border War was the Torrey Pines grade (approx 1.5 miles long). Marie made it up w/o walking!!! This uphill brought us into LaJolla; what a pretty area! Dede signaled to us at the streets where we needed to turn and the remainder of the navigation thru LaJolla was a piece of cake. We stopped for a picnic lunch at the beach just before leaving LaJolla and enjoyed seeing Dede take to the saddle for a quick spin down the bike path on Marie's bike. She did great!!! Our most treacherous piece of road today was downtown San Diego. The traffic was awful and the traffic lights were not working. We dodged the best we could and made it to the Wells Fargo building where the bikes will be stored overnight, thanks to Charlotte's nephew David who works in the building. When we arrived we were escorted by the Chief of Security to an area where we could lock up the bikes. David joined us and then escorted up to his firm's offices on the 23rd floor for a quick look at the skyline of San Diego. He had actually gone far beyond the role of tour guide and had arranged a sweet surprise for us. When we started to walk around the perimeter of the building, to look out the windows, his co-workers came out of their offices and gave us an ovation and congratulations on a job well done. It was embarrasing to a small degree yet very flattering and heartwarming. With happy hearts we loaded up into Dede's car and headed out to Escondido to drop our gear at Marie's sister's main home and get our showers. After showers we loaded up into Marie's mother's car for the 1.5 hour drive to Redlands where we were attended a spaghetti dinner and silent auction fundraiser for HD. We also met up with Marie's husband Ron, who had driven from Grand Junction CO to join us for the Convention. The dinner and fundraiser were organized by Jim Giles and his daughter Jennifer Hickok. Jim and Jennifer are also the wonderful people who took on the tough job of organizing, producing, and selling the Bike For The Cure ride t-shirts. In both areas they did a stellar job. The dinner was really fun and the food was excellent. There was a wonderful tossed salad and thick slices of bread with a garlic spread on it. The noodles and sauce were perfect and the meatballs were delicious. For dessert there was cake with an awesome fruit filling in the middle. We left Redlands at about 9pm and made it back to Escondido where we collapsed. Tommorrow is another early day. With much love and gratitude, Amanda, Marie, and Charlotte Today's mileage - 43 Cumulative mileage - 1542 Road Change Report - $.54 Day 39, Part 1 - Border War on HD - San Diego CA - Tijuana MX The final day of Border War on HD dawned early! We had been advised by my sister Meg that we needed to be on the road to San Diego about 6:00 a.m. to avoid major traffic snarl. So ... we followed her advice, and we arrived in San Diego by 7:30 a.m. We retrieved the bicycles from where they had been safely locked in the building where Charlotte's nephew David works. We rode to the Broadway Pier, which was barely a mile away. It had been pre-arranged to take the 10:00 a.m. ferry to Coronado Island, so we had about a two-hour layover. I used that time to get my back-up pocket mail computer activated, since my main one still wasn't working. Ron went to buy gasoline for the 4Runner, but was gone an unusually long time. When he finally returned, it was with the bad news that he had neglected to put the 4Runner in gear while preparing to fuel up, and it rolled forward, hitting a limo! Dede arrived about 9:30 a.m. and so did Bill and Sue Capps. Bill will lead us today as we wend our way to the border. He's a retired San Diego policeman and cyclist, very nice, talkative, and high energy! Bill, Amanda, Charlotte, and I boarded the 10:00 a.m. ferry, while Ron and Dede drove over the bridge to Coronado. The ferry was full; largest group was an elementary school-aged group of kids on an outing from a summer day camp. Saw quite a few Navy ships docked, including the Stennis, a nuclear powered aircraft carrier. (Thought of my now deceased father; he would have loved it!) Disembarked onto a nice bike path along the bay. Later it turned into the Bayshore Bike Path. It was a great ride along the Silver Strand, a narrow ribbon of highway, with the Pacific Ocean on one side, and the bay on the other. Bill and Sue volunteer their time as campground hosts at the State Park. We saw the USS Bellau Woods, Tarawa, and Bon Homme Richard. There were ties with all of those vessels. Bill teaches classes on the Bellau Woods, my father was Chief Engineer of the Tarawa back in the 50's, and Ron's brother Tom had served in communications on the Bon Homme Richard during the Vietnam War. Bill was a great tour guide, pointing out interesting sights along the way, including the Navy Seal training facility. We even saw about 8 parachute out of an airplane. The bike path ended in Imperial Beach, where it was quite windy, keeping the rising temps down. Followed Hollister Ave. to very close to the border. Went right on Monument Road towards Border Field State Park. Paved road was fine, but it disintegrated into a fine sand surface in two different sections. I rode through the first section OK but not the second. My front wheel caught, and I had a low speed spill to the left, falling onto my left knee, slightly skinning it. (First fall even on a "Bike For The Cure" ride) The impact broke my bike mirror, though. Brushed myself off and walked the rest of the way. Ron and Bill met me on the paved uphill portion, where Ron finished pushing my bike up to a wonderful park with benches, grass, and a view of the Bullring-by-the-Sea just across the border. An impressive white Italian marble elongated pyramid marked the boundary that was decided upon at the Treaty of Guadalupe Hidalgo on Feb. 2, 1848. This marker was wedged in by fencing on both sides, with the West side going right out into the ocean, and the East side going up and down the sloping hills at the border. There were many Border Patrol Officers there, with whom we visited. Much manpower spent on patrol. Dede and Ron had set up a great lunch spread for us. All sorts of goodies. Primarily because of Marie's fall, we SAGged out to where we had turned west towards the Park. It was a 4-5 mile ride to close to the border crossing at San Ysidro. Ron and Dede parked in a shopping mall area while we bicyclists rode closer. End Part 1 Day 39, Part 2 - Border War on HD - San Diego CA - Tijuana MX Bill had re-arranged our border crossing with the U.S. Customs Officials. Officer Deogracias (what a great name - translated it means "Thanks be to God.") led against the pedestrian traffic that were returning to the U.S. We stopped for many photo ops, and he even took photos of us, as did Bill. Officer Deogracias also took us into the old customs building built in the 1930's. He was so cordial! Finally arrived at the exact spot marking the boundary. We stepped over into Mexico, fulfilling the "border to border" theme of this year's ride. We thought we might find some folks from the Huntington's Disease discussion group, who had planned to greet us, but they were not to be found. So ...we walked our bikes back with the pedestrian traffic, through customs, and back to the US. The border has 24 lanes of vehicular traffic, the busiest border crossing in the whole world! At least 2 million a month cross this border, in vehicles and by foot. We made it back to where Ron and Dede had waited. (Afterwards, we realized they could have walked over the border, too). Taco Bell for a late lunch; seemed appropriate! It was quite a sight with 5 of us inside the 4Runner and the three bikes on the bike rack! We drove North to the waterfront area, and dropped Dede off at her car. She was going to lead us to the Town And Country Motel, the site of the HDSA National Convention, but our wires got crossed. Eventually arrived there; met up with my sister Meg and my mother. We all enjoyed visiting around one of the swimming pools, where folks from the Hunt-Dis list had gathered. We received a "hero's welcome," and it was so much fun to see friends again! We enjoyed the evening "sing along" lead by Dave Hodgson from Illinois and Lou Wilkinson from Alberta, Canada. I got to announce the winning name for my bike. Henceforth, it shall be known as "Hope (of Glory)." The name of Hope was submitted by Bill Pearson (a Canadian from the list). "Glory" was submitted by Annette Williams, our dear friend and Washington SAG driver. So Bill, you will be receiving a Border War T-shirt and a copy of "Portraits of Huntington's" as soon as I can get them to you! Congratulations! Also, thanks to all who submitted names. Close to 100 names were submitted. Thanks to all who participated! This year's ride is now history. Grand totals of mileage and Road Change will appear in a subsequent message. With many emotions rolled into one, we remain, Marie, Amanda, and Charlotte Day 40 (First Day of Convention) - Border War on HD - San Diego CA The Huntington's Disease Society of America's 16th Annual Convention was opened by Donald King, Chair of the HDSA Board of Trustees. John Madden, Chair of the 2001 Convention Steering Committee, added his comments. The participants were welcomed to San Diego by "Sandy" Sanford, President of HDSA's San Diego Chapter. State Senator Dede Alpert added her welcome, and told of legal issues begin addressed in the Legislature that would benefit the HD Community. Barbara Boyle, HDSA's National Director/CEO spoke on this year's Convention theme, "Fulfilling The Promise." The second half of the morning was a panel discussion with representatives from the medical community, a young woman named Lisa, Phil Hardt (person with HD), Pam (at-risk), and Frances, a spouse. Everyone's comments were well received. After lunch, there were 3 time slots of break-out sessions before the evening reception. I attended Genetics of HD, Nutrition and HD (presented by Elizabeth Penziner, a young woman whom I met 3 years ago in Denver, when she was just beginning her MA in Health Promotion), and At-Risk Teens and Young Adults. When a person is at the Convention, many sessions are attended, but also many acquaintances are renewed, and others are begun. All 3 of us bicyclists enjoyed seeing folks we had met along the route, plus the newly initiated relationships. One such new friendship was another Nemec family, from Texas (Frank and Maritere). Another new friend is Mary Roth, a woman from New Orleans, whose son Clarence LaFrance III died earlier this year. His story is in Carmen Leal's newest book "Portraits of Huntington's." I got to see the displayed finished Hunt-Dis Quilt, which Annette Williams had toted from Pullman, WA. The quilt is a true work of art, with 144 - 12" squares on the larger one, and maybe 48 on the smaller one. Each square represents a loved one touched by HD (or in my case, squares representing Bike For The Cure" and even "Road Change for HD." It was humbling to see the so many squares that I had made interdispersed on the quilt, as well as at the four corners. Annette's friend Mollie and her crew pieced the squares, and quilted it. There were accompanying books with biographical stories about each square. It turned out just awesome! Two awards were presented at the Convention Reception. Jean Miller received the Hunt-Dis Hero Award, and I was presented a plaque thanking me for the awareness and funds generated by this year's ride. Through an inadvertent misunderstanding, Amanda wasn't presented a plaque, but the situation will be rectified. The Oklahoma folks invited us to have dinner at the Harbor House in Seaside Village. What a sumptuous feast, with appetizers and entrees. The father of one of the men footed the entire bill, which was probably about $500! On the go all day and into the evening, enjoying the sessions and friendships, from "America's Finest City," Marie, Amanda, and Charlotte Day 41 - Border War on HD - San Diego CA Saturday began bright and early with a full morning of the AstraZeneca Research Forum "From Models to Medicine." An 'Overview of HDSA Research' was given by Dr. Christopher Ross, 'Alterations in Gene Transcription in HD' by Dr. Leslie Thompson, 'Toward an Understanding of HD and other Polyglutamine Diseases: Lessons from Flies and Fish' by Dr. Henry Paulson, 'Fetal Cell Transplantation: Interests and Limitations' and 'Update on Huntington Study Group Studies: CARE, PHAROS, PREDICT' by Dr. Karl Kieburtz. After lunch at the local Fashion Valley Mall Food Court, we returned to the afternoon break-out sessions. I attended 'Overview of Medications for HD' by Dr. Vicki Wheelock and part of 'Advanced HD Research' with Dr. Robert Friedlander and Henry Paulson. By late afternoon, I was fading, and wasn't absorbing much of what was being said, so I retreated to the hotel room to rest. The gala event of the Convention is the Reception, Dinner, Awards, and Dancing. Some didn't even recognize us bicyclists, with lovely outfits on (and not T-shirts and spandex black riding shorts). We sat with Glenda and Tom Gillihan, Russ Kastberg, D'Anna Frewing, and Steve and Mary Ann from the Southern WA and Portland OR areas. A green salad preceded the chicken w/hollandaise sauce, filet mignon, and seasoned mashed potato dinner. An oval chocolate-covered ice cream dessert completed the dinner. After the awards ceremony, the infamous dance (with DJ) began. The young people, older folks, couples, pHD's and PhD's all mingled. Various styles of dance CD's were played: slow music, hip-hop, line dancing (Marie's favorite "The Electric Slide,") Cotton-eyed Joe, jitterbug, twist, Macarena .... you name it, DJ played it! Marie and Ron stayed 'til a little after midnight, but Amanda and Charlotte helped close down the dance after 1 a.m. Everyone just had a ball! All danced out, and so glad to be celebrating life with all our HD family, Marie, Amanda, and Charlotte Day 42 - (Last Day of Convention) Border War on HD - San Diego CA The poignant melody from Andrea Bocelli/Sara Brightman "Time to Say Good-bye" was our theme today ... Morning sessions at the Convention were drop-in round table discussions on various topics. There was also a continental breakfast of pastries, bagels, and muffins. I listened in at the 'Genetics' table. Second morning sessions were Sharing and Networking Meetings. I attended the Caregivers/Spouses session. Amanda came and got me, because at check-out, we found that a $40 breakfast bill had been accounted to us, but it belonged to someone named "Nemeth." Got them to remove it from our bill. Caught the last of the good-bye session. Barbara Boyle (Executive Director/CEO of HDSA) allowed me to report on the "Road Change for HD" totals and inquired if I'd be riding to Cleveland OH for the 2001 Convention. I didn't commit; have to see where the Lord leads. Good-byes soon began; so many dear ones returning to their caregiving roles or lives at-risk or living with HD. Soon we were starting to go separate ways. Charlotte left with her niece and nephew, to go to the famous San Diego Zoo, spend the night, then fly back to Grand Junction on Monday, July 2. Amanda's friend Rob Arbogast picked her up for lunch and sightseeing, which included taking in the play "I Love You're Perfect, Now Change," at the San Diego Repertory Theatre. She said it was hilarious! Ron and I ate lunch at the Fashion Valley Mall Food Court. Just as we were starting to eat, who should appear but Wayne, Annette, and Shane Williams, who got their food then joined us. Ron caught the Blue Line Trolley to the train station downtown, to start to wend his way back to Colorado. He took the Surfliner to Union Station in Los Angeles, then boarded the Southwestern Chief to return to Colorado Springs. Amanda returned to the Hotel about 6pm, in time to go take the Blue Line Trolley) to have dinner in Old Town. It was the inaugural "Girls Night Out" (plus Shane). Annette and Shane Williams, Barbara and Megan Younger, Sue Leck, Lou Wilkinson, Marilyn Collins, Gail Crisp, Gerleine Schoonover, Jean Miller, Pat Pillis, Amanda, and I enjoyed good Mexican food and great fellowship. Upon returning to the Hotel, Marie enjoyed her now-famous annual Bailey's with Lou (fourth Convention). Amanda and Pat were asleep upon my return. Pat has to catch a 6:45am flight back to New York. Border War on HD is history now, but the memories will remain, and new relationships have been started and grown, which will continue to bud, bloom, and grow. To all who touched, or were touched by the ride, to those who fed us, hosted us, SAGged us, to T-shirt sponsors, to contributing donors, to those who prayed for us ... we love you all, and thank you from humble hearts for the opportunity you gave us to raise awareness and funds for HD Research. Together we will help find a cure! As I said in the first Daily Message, believing that this ride was God's will for us, I now repeat the same phrase. This year's ride is over, and we will look to the Lord to see what next year may bring. The HDSA Convention is scheduled for Columbus Ohio. Actual riding miles of Border War on HD 1674 plus 150 miles SAG (for all 3 of us; Marie also had 53 miles of SAG when her bike Hope's seatpost was broken). Our Border War on HD's actual route was 1824 miles. Final Road Change Report - $21.?? which exceeded our projection of 1 cent a mile. Keep in touch. As always, Marie |
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