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Day 36 - May 31 - HD Ramble 'Round the Colonies
First day of the HDSA 17th Annual National Convention, Themed "We
Over 600 Convention-goers gathered for the opening remark at the Hyatt
Regency Hotel on High Street. Woody and Marjorie Guthrie were mentioned
frequently; "we lost a legend and gained a friend." HD has come
from the closet to the center of research. This is the 35th anniversary
of the death of Woody Guthrie, the only "famous" person who
has had HD. After remarks by Dr. Don King (Chmn HDSA Board of Trustees),
Dr. Jane Paulsen (Chair of Conv Steering Comm), Marty Vaughn (Pres Central
Ohio Chapter), and Barbara Boyle (HDSA Nat'l Ex Dir/CEO), there was a
coffee break. Next 1 1/2 hrs was a panel discussion with a Phd, his wife,
and Shana Martin, an at-risk young woman, who is very dear to me. I met
Shana four years ago in Denver, when she was just 18. I am her "Fairy
Godmother"; E-mail me privately if you want "the rest of the
After lunch (very convenient in the same bldg) there were 6 workshops
from which to choose. I went to "The HD Family: Talking to Kids about
HD' led by Bonnie Hennig, the social worker we met at the UConn Health
Center earlier this month. It was Bonnie who coined the phrase "The
After another coffee break, a talk on the process of how drugs are approved
by the FDA enlightened all of us.
The second break-out session afforded another chance to get more in depth
information on one of 10 topics. I chose "Managing Two Generations
of HD," but was disappointed that we didn't even discuss the topic.
A brief "Words of Inspiration" session was followed by the Convention
Reception, a more informal gathering with refreshments of fruit, crackers,
cheese, veggies, etc. At this reception, we four "Ramblers"
were each honored by a plaque of appreciation from HDSA for our efforts
on this year's ride. Close to $11,000 has come in, and that amount will
be doubled! The Hunt-Dis Hero Award was presented to Lou Wilkenson, a
dear friend from Calgary, Alberta, Canada. Also, the three prior recipients
were honored (99-Barbara Boyle, 2000-me, and 2001-Jean Miller.
The last event of the day was a play with four different monologues, called
"Voices in the Dark." It was written by a young man at-risk.
It was pretty "heavy," not really to my liking.
All during the day, I was renewing friendships and making new ones grateful
for this opportunity to share with so many dear, special people.
Time just flew: one full day of Convention finished.
With love from Columbus,
Day 37 - June 1 - HD Ramble 'Round the Colonies
Second Day of Convention
The morning began with a 'Walk For The Cure' led by Shana Martin. We
walked down to an exact replica of Columbus' ship, the Santa Maria.
The rest of the morning was spent listening to the HDSA Research Forum.
It was chaired by Dr. Christopher Ross, who we met at Johns Hopkins in
Baltimore MD early last week. Presentations were made on various aspects
of research, from fruit flies to mice, and humans. Dr. Jane Paulsen explained
the "PREDICT" study, and Dr. Ira Shoulson explained the "PHAROS"
study. Both need additional participants, especially men.
After lunch, there were three successive workshops. The first one I attended
was "Nutrition and HD," presented by Elizabeth Penziner, another
young woman I have known for four years. I am so proud of her and how
her career as a Health Educator has progressed.
Next session I attended was on Medication and Alternative Treatment for
Symptom Management. I didn't feel the presenter was dealing with her field
Last workshop I selected was "Understanding Behavior in HD."
should have chosen another one; it was pretty boring.
As I was walking to the elevator, a woman noticed "Colorado"
on my nametag. I stopped to visit with her, and as it turned out, we knew
each other from '92-93 in Grand Junction. I met Jody when I was working
for my friends' restaurant, delivering lunches! I recalled that Jody moved
from GJ to the Midwest, but had lost track of her. Turns out that her
husband has HD, and is now in a nursing home.
Went upstairs to get dressed up for the Gala dinner, awards, and dancing.
Most folks get dressed up; I'm no exception!
Ron and I ended up sitting at a table with Charlotte, Pat and Shannon
Pillis, Scott and Sherry Springer, Robert and Shanna Turek from NE, Becky
Fisher from Tennessee. Nice salad, beef and chicken shish-ka-bob with
rice, and pie.
The highlight for many of us is the dance. The researchers, Phd's, caregivers,
youth --- everyone mingles and dances. I enjoyed seeing Dr. Chris Ross
dancing with Dr. Marcy MacDonald. Finally the DJ played "The Electric
Slide," a line dance, which Ron and I learned. Totally got into that
dance, my favorite! A couple of the youth asked me to dance with them,
too. Ron and I danced a few slow dances, too, in between dances visiting
with friends who had hosted us during the Ramble. We stayed until about
12:40 am, just taking in the sights, sounds, and enjoying everyone's company.
Finally the hour and our age caught up with us, so we trudged upstairs.
Another great day among friends ...
Day 38 - June 2 - HD Ramble 'Round the Colonies
Last day of Convention, then Columbus OH - Indianapolis IN
Went out walking early in the a.m., then went up to Lou W.'s room (on
the 15th floor) for our annual Bailey's. (It's the only time I have a
drink all year, and for Lou and me, it's become a Convention tradition;
this is our 5th Convention).
Sat in on the Support Groups Breakfast/Roundtable. Got a few ideas for
our peer-led support group in Grand Junction.
Last was the Sharing and Networking Session "Parents of At-Risk Children,"
led by Peggy Polito, the social worker who hosted us in the Pittsburgh
area. Each participant had such poignant circumstances. For most, HD came
as a total surprise. Peggy did an excellent job facilitating the session.
Those who were still in attendance gathered for the very brief closing
remarks from Don King and Barbara Boyle. "See you in Houston next
year (June 6-8, 2003)."
Now the hard part started, the good-bye hugs, to those so dear, to old
friends and now new friends, who are now etched on my heart.
It took a lot of trips to get the van loaded. John and Marie had to return
to Wisconsin earlier than planned, so John's brother drove down to Columbus
to pick them up. The van looked strange without the Rocket Box and three
bicycle racks on top. Kind of naked.
Since there was plenty of time, we dropped Ron off at the airport for
his 5:00 pm flight back to GJ. Charlotte and I then stopped to buy gas
for the van, and headed towards Indianapolis on the I-70.
It was a straight shot to Indianapolis, through verdant countryside. Had
to use a beltway loop around the city to locate the motel. Nice accommodations
at the Wellesley Suites.
Tried to get with Jody, with whom I had renewed acquaintances, but was
unsuccessful. Bought some dinner at WalMart.
Retired fairly early, because of the anticipated long day tomorrow.
Miles driven: 212 Road change: 2 cents
With love from "Hoosier" country,
The Ramblers Two
Day 39 - June 3 - HD Ramble 'Round the Colonies
The Drive from Indianapolis IN to Kearney NE - SEE FOUR STATES
Indiana is not on Daylight Saving time, so we gained an hour and used
it "sleeping in" until 6:15 or so, as the continental breakfast
started at 6:30.
We were on the road by 7:20, on the I-74. Very rural, with the countryside
dotted with farmhouses, silos, etc. Passed "The World's Largest Fireworks
Stand" in Shelton IN (open all year). Bought gas just before the
Illinois border, saving about 15 cents a gallon taxes. Passed signs for
Champaign-Urbana, Normal-Bloomington, and then through the outskirts of
Peoria. An hour later we drove through Galesburg, the site of the Lincoln-Douglas
Debate, and birthplace of Carl Sandberg.
At 12:30 pm we crossed the Mississippi River into Iowa, the third of our
"I" states today. Had lunch in a rest area near Davenport IA,
known as the "Queen City of the Far West" back in the 1850's.
Watched a grandmother and mother with a 4 year old and a set of 8 month
or so old twins, probably a boy and a girl.
Called Elizabeth Penziner, a young woman who I have known for four years.
She works at the HD Center of Excellence in Iowa City, and was a presenter
at the Convention. I was hoping to see her, and meet her husband Andy,
but it wasn't to be. By the time we made a connection on the phone, we
were 1/2 hour past Iowa City.
Continued on through Des Moines, in the middle of the state. Passed signs
for DeSoto, the birthplace of John Wayne.
By 6:00 pm we crossed the Mormon Bridge over the Missouri River, and were
in Omaha. Nebraska is the "Home of Arbor Day."
Ate burgers at a Hardee's restaurant near the truck stop - 99 cent special!
Continued along the I-80 through Lincoln and finally arrived in Kearney.
Just another 20 minutes to Amherst, where Charlotte's 92 year old mother
Ann was waiting for us! Ann's home used to be a schoolhouse! We were glad
to be ending this long day, through portions of four states, mile by mile.
Miles driven today - 820
With love from the heartland,
The Ramblers 2
Day 40 - June 4 - HD Ramble 'Round the Colonies
The tourists in Kearney
After a good night's sleep, Charlotte and I took a walk along a country
road before we ate breakfast and headed to town with Ann.
Needing to get the oil changed on the van, that was one of the first stops.
Some equipment wasn't working, so they said to come back later.
Went E of town to visit Cabela's, a huge outdoor clothing and supply showroom.
Then we visited showroom of Cookbooks by Morris Press, which specializes
in publishing cookbooks for schools, churches, etc.
Drove back to the Jiffy Lube, where the oil change was completed. We were
given certificates for free cinnamon rolls from the Country Kitchen! Decided
to have lunch there after touring the Rails and Trails Museum.
One of the displays in the museum was about Hwy. 30. Hwy 30 was Nebraska's
"Main Street of America" in its heyday, the shortest and most
direct route between San Francisco and Boston. It was also called the
Lincoln Highway, which in its day was the longest paved East-West Hwy
in the US.
Had lunch at the Country Kitchen. And who should we spot? The mother,
grandmother, and three children from yesterday's rest stop lunch. Being
the gregarious person she is, Charlotte walked over to talk to them. Found
out they used to live in the Grand Junction CO area! The mother of the
3 children graduated from Fruita Monument High School in 1988 (one year
older than our son Kevin). Talked about different ones that we both knew.
Took the cinnamon rolls as a "take out" since we were full.
Drove to the new tourist attraction in Kearney, the Great Platte River
Road Archway Monument, which spans over the I-80. It commemorates the
Oregon Trail, the Mormon Trail, the California Trail, and the Pony Express,
all of which passed through Kearney. The displays were very meaningful
to Charlotte and me, since we had been on the Oregon Trail in 1999. We
were familiar with the stories about South Pass, Devil's Gate, Independence
Covered wagon, stagecoach, railroad, and automobile travel were all depicted,
with the narrative coming from special earphones, which we wore.
The role of Pres. Eisenhower in the development of the Interstate system
was also depicted. From 1956 into the 1990's the Interstate System was
built. The I-80 was the first transcontinental Interstate Hwy completed.
Enjoyed one of the last exhibits the most, depicting a diner, a '57 or
so Cadillac convertible with fins, and speakers from a drive-in movie.
The strains of "This land is your land, this land is my land"
by Woody Guthrie seemed very apropos. There was also a window to see the
traffic on the I-80 passing beneath us.
From oxcarts to the Internet ... wow!
Drove up Center Street, the main street of Kearney. I spotted a quilt
shop, and we went in. Found some nice state flower fat quarters for the
"Bike For The Cure" quilt I plan to make this year.
Went to WalMart to get food for dinner, as Charlotte had invited some
of her family for lasagna, salad, fruit, and ice cream.
Charlotte's two brothers (Harvey and Jerry), Harvey's wife Barbara, their
son Ryan and his wife Brooke joined us for dinner, and later their daughter-in-law
Jody stopped by to pick up granddaughter Sydney (age 9 months), whom Harvey
and Barbara were baby-sitting. It was fun to be able to put faces to these
loved ones about whom Charlotte speaks frequently.
Quite a busy "rest day" as you can see.
With love from South Central Nebraska,
The Ramblers 2
Day 41 - June 5 - HD Ramble "Round the
Amherst NE to Grand Junction CO
Got on the road pretty early, wanting to make it to Denver between noon
and 1 pm. Followed the I-80 for a couple of hours, through North Platte
and later Ogallala. Soon thereafter, we turned onto the I-76, which goes
from the NE corner of Colorado (Julesburg) to Denver. Stopped at the Visitors
Center in Julesburg. Found out that was the only Pony Express stop in
Colorado. We admired the Great Welcome Center Quilt, which was a coordinated
effort of love and creativity. Over 40 volunteers and friends of volunteers
embroidered quilt blocks for the 50 states. The shape of each state, its
state bird and flower, and its order of entrance into the Union were depicted.
I told the volunteers about how Delaware got to be the first state, and
Pennsylvania the second. (Learned that in Philadelphia)
Called Alice Hinkle from Fort Morgan, about an hour outside of Denver.
Alice is the former Pres. of the Rocky Mtn. Chapter of HDSA. She won the
lovely pack basket made by 13-year-old Shannon Pallis and auctioned at
the National Youth Alliance Silent Auction on Saturday night at Convention.
Alice flew to Columbus, and didn't have an easy way to bring the basket
back to Denver, so I volunteered to transport it in the van. Alice's husband
Scott met us just off the I-70 in Wheat Ridge, and he took the basket
After a quick Taco Bell lunch and buying gas, we got back on the I-70
to make the familiar last 250 miles of the journey. Up through the foothills
of Denver, through Idaho Springs, Georgetown, and over the Continental
Divide at the aptly named Eisenhower Tunnels (elevation 11,110 ft).
Down through Silverthorne, up through Frisco, over Vail Pass (elevation
10,400 ft) into Vail, Edwards, through Glenwood Canyon into Glenwood Springs.
Stopped for a soft-serve ice cream cone, and then drove the last 100 miles
to Grand Junction.
Took Charlotte to her townhouse, then drove to our little farm, just off
Hwy. 50. Everything looked quite green, despite the lack of rain.
One more message, a summary, will follow.
Miles driven today - 600
Miles from Columbus to Grand Junction - about 1600
With gratefulness in our hearts for a memorable "Ramble 'Round the
The Ramblers 2