During the ride, a daily message will be written, recounting the highlights
and progress. E-mail Marie’s husband Ron at ron.nemec@bigfoot.com to
request subscription.
Day 15 - Rockies to Plains 2007
Last day of this year's ride ...
Everyone met up at Trinity Lutheran Church for the big day. Our excitement was not dampened by the overcast skies and slight drizzle; in fact, it was a welcome relief!
Got the details on routing worked out, with a combinaton of Route 66, Sandy's, and Tom's suggestions, and it worked out well.
We were quite a sight, with 6 riders, including 6 year old Cassie. Cassie gave me over $200 she collected for HD research and family services - isn't that remarkable?
Rode through Yukon, the hometown of Garth Brooks. Cassie's enthusiasm for riding was waning a bit, so she SAGged with her Grandma Connie, etc. for about 11 miles. Sara continued to ride.
Stopped for lunch at a Taco Bell. Cassie started riding with us again.
Ecitement continued to mount as we could see the skyscrapers in OKC on the horizon.
Our timing was right on the money. We got to within 2 blocks of the hote at about 2:15 pm. Caught our breath, changed out of sunglasses. I lead the pelaton of riders in. We were greeted by a small contingent of supporters. The offical Convention photographer took quite a few photos. Hard to process that the ride was actually over.
Charlotte checked in and got settled while I got a ride back to El Reno with Sara's family. They all live close to El Reno, in Geary.
Fond farewells/hugs. Time to say goodbye ... Loaded my bike into the van, and drove back to OKC. I did manage to stop at Braum's for a single scoop chocolate chip ice cream in a waffle cone. Yum!
Drove back to the hotel, off-loaded my convention stuff. Found a $7/24 hr parking garage adjacent to the hotel.
After a shower and clean clothes (including wearing regular shoes for the first time in two weeks) Charlote and I walked to Bricktown Brewery to meet up with Sandy, George, George's Aunt Jane, his nephew Jason, Marge, Leona, and Sherri. Bricktown is the rejuvenated downtown area of OKC. There's a canal with sightseeing boats, a minor league baseball park, lots of restaurants, etc.
Another "time to say goodbye ..." Sandy and George aren't atending the Convention, and are headed back to Omaha tomorrow. We really got to know Sandy much more this year. She's a darling!
Our room is very comfortable, and I am ready to spend three nights in a row in the same bed.
Today's totals
Everyone but Cassie rode 31.5 miles
Road change - $1.04
Route totals
925 miles (our original estimatons were off by 25 miles)
$2.90 Road Change
423.2 miles ridden by Marie
Charlotte's mileage will be forthcoming
With love from OKC,
Marie
If you want to e-mail me, send the e-mail to: bike4cure@pocketmail.com
Day 16 - Rockies to Plains 2007
After a good night's sleep and breakfast in the room, I ventured downstairs to find the Convention facilities. There is a SkyBridge from the Renaissance Hotel where we are staying to the Cox Convention Center, which is quite handy.
Began to see many familiar faces, among Convention attendees and exhibitors. Lots of hugs. All three of the Hunt-Dis Memorial Quilts were displayed side by side. That is always impressive.
Opening Session set the tone for this the 40th HDSA Convention, recalling Marjorie and Woody Guthrie connections. One of the speakers was Randy Norman, who chairs the Free Folk Festival. He SAGged for Scott and me in 2000 when we rode through Okemah, the birthplace of Woody Guthrie.
The second morning session was outstanding. The title was "Empowering the Family: How HD Impacts the Family." Talks and Power Point presentations were given by Shana Martin (of log rolling fame, who rode the Wisconsin leg of the Meander last year), Dorothy Hearn (who helped to host the ride in 2000 and 2004, and she was also one of the original OK families contacted by Marjorie Guthrie and helped to form the first support group), and Alyson Krivanek, a fellow Coloradan, who has two daughters with Juvenile HD.
Missed the first afternoon breakout session, while visiting with friends, both from the past, and new ones as well.
Attended "Review of Medications to Treat Chorea." Chorea is a Greek root word for movement. It's not a misspelling of the Asian Country. A word from the same root is "choreography." Then I attended a session on "Changing Roles in an HD Family." It was so cold in the meeting room that I didn't get much out of it.
My final break-out session was "Treatment Options for JHD (Juvenile HD.) HD symptoms even occur in toddlers. It is fairly rare, and usually inherited from the male parent. We had a question/answer session with one of the experts on JHD, Dr. Martha Nance from Minneapolis.
The Convention Reception and National Youth Alliance Talent Show was the last event of the evening. Charlotte and I were recognized for our annual "Bike for the Cure" event. I was upset that Sherri and Sandy weren't acknowledged, since we rode as a team. Sherri presented a ceremonial check for $22,611 from the 2nd Annual Pig Roast she organized in Lewiston, Idaho. That will be tripled by anonymous donors. It is the largest single donation to any ride ever. Hats off to Sherri, her family, and her committee. What a dedicated hard worker!
The talent show and auctioning off of dances with various young people was the final phase of the evening. Main auctioneer was Billy Aaron Brown, who was an actor on "8 Simple Rules for Dating My Teenaged Daughter."
Marge, Leona, Sherri, Charotte, and I drove to the Oklahoma National Memorial, site of the bombing of the Murrah Federal Bldg on April 19, 1995. This was my third visit to this site (2000, 2004, 2007) but the first at night. 168 Americans were killed on that day of infamy. Each person who was killed is honored by a chair in the Field of Empty Chairs. These chairs are lighted, and the lights reflect on the shallow reflecting pool between the two walls. The following wording is on the walls: "We come here to remember those who were killed, those who survived, and those changed forever. May all who leave here know the impact of violence. May this memorial offer comfort, strength, peace, hope, and serenity." Amen!
First full day of the Convention has ended, and I'm tired. All for today; more tomorrow!
With love from OK,
Marie
Day 17 - Rockies to Plains 2007
The day began early, with the traditional Walk for the Cure. This year, all participants were given a bright orange t-shirt to wear. About 30 of us "early birds" walked from the Renaissance Hotel to the National Memorial. Our leader was Charley Finsel, who acted as "tour guide" to the area surrounding the bombing site.
The morning sessions were given by Dr. Jim Gusella (co-discoverer of the HD gene) and Dr. Robert Pacifici of CHDI, the intermediate company between the basic research and clinical trials phases.
Ate lunch with Jack Frye and Yvonne Farmer, our friends from the lunch stop in Forgan and the stay in Enid.
Afternoon sessions were packed with information. Along with about 10 others, I attended Dr. Martha Nance's sesion on "Understanding & Managing Psychiatric Symptoms." In error, I attended "How to Ask Quesrions about HD." Didn't realize it was for young people only, so sat quietly in the back of the room. My third afternoon session was "Managing Challenging Symptoms" with Dr. Jane Paulsen. My last session was "Potential New Therapies, where a new drug, HD-O2 wasdiscussed. This study is for 3 years, and is being funded by the National Instututes of Health. HD-O2 is designed to slow disease progression.
For the last few years, the NYA (youth sub-branch of HDSA) has put on a silent auction. Two items I got donated were included, and both were bought. The framed original art drawing of Rootie from last year, and a swan quilt were bid on. Suzanne Wyckoff won the Rootie drawing, which was nice. Sherri won a framed Pearl Jam poster.
The highlight of the Convention is always the Gala and Awards Dinner and dancing. Dinner companions included Suzanne Wyckoff (CO Q 10), her friend Ann, Bonnie Taylor, Joan Michener and her father David, Sherri, Marge, Leona, and Charlotte. Dinner was nice, Usual convention fare of salad, chicken, rolls, veggie (al dente green beans), and dessert (very chocolate cake with a dollop of whipped cream).
Starting with conga line dancing to Sister Sledge's "We Are Family," the dancing went into the wee hours of the morning. Lots of energy! Sherri and Charotte helped to close it down about 1:30 am, but I bailed an hour earlier. It is always so touching to see folks in wheel chairs out on the dance floor, guided by caring souls who realize just like everyone else, the people with HD just want to have fun too.
Rich, full day ...
With love from OKC,
Marie
Day 18 - Rockies to Plains 2007
Charlotte and I were up early and among the 10-12 who attended the Inspiration Service. Rev. Terry Jones is a 30 year survivor of Lou Gehrig's Disease (A.L.S.) His topic was "Do Dreams Come With an Expiration Date?" I bought a copy of his autobiographical book, "Soul Survivor."
Informal Round Table discussions over a light breakfast of muffins/bagels and fruit. Sat with the Micheners for awhile at the Music Therapy table, then visited a bit with Carol Frederickson, the Rocky Mountain Development Director.
Barbara Boyle made her closing remarks, and the Convention closed about 10:00 am. Next year's Convention will be in Pittsburg PA.
Got on the road to Broken Arrow. Stopped in Okemah, birthplace of Woody Guthrie. I had been there in 2000 with Scott Springer. Wanted to see the brick with "Bike For The Cure For HD - Marie Nemec" on it, near the Woody Guthrie statue.
On to Broken Arrow. Found Maggie (Verne) Farque's home easily, since this is the third time I have been here (2004, 2005, and 2007). Found Tony and Verne doing well, despite Tony's HD. Pork loin, rice, veggies, croissants, and cheesecake was a wonderful dinner. Eric (Tony and Verne's son) and his wife Leslie joined us. Their other son Jason was sick, and didn't want to expose us to the germs.
Turned in about 9:30 pm. anticipating being able to "sleep in" a little.
With love from Broken Arrow,
Marie
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