Daily Messages Week One
HD Ramble 'Round the Colonies
With trust in God, hope in my heart, anticipating what this year's ride
will bring, I left Grand Junction CO for the long drive to Cedarburg OH.
The first leg was GJ-Colorado Springs, a very familiar route. Amanda Adams,
my friend and riding buddy from "Border War on HD" in 2001,
had a wonderful chicken dinner waiting for me! It was so good to see her,
since I hadn't since October 2001.
In the morning, I left driving out Hwy. 24, one of Amanda and my old "haunts"
from training rides last year. I avoided Denver metro traffic by heading
to Limon, along the I-70. From there, I headed North on Hwy 71. Drove
through Last Chance, CO where the Dairy King appeared to be one of two
or three businesses. In Brush, I got on the I-76, heading for Julesburg,
in the extreme NE corner of Colorado.
Nebraska. Passed into Central Daylight Time. Kearney NE was my destination.
My friend and riding buddy Charlotte Reicks had arranged for me to stay
with her sister-in-law. I stopped first to buy gas, since I thought the
van was almost running on fumes. The price seemed high, $1.69/gal for
87-octane gas. Well, it was! On the North side of the I-80, where the
locals shop, it was $1.39/gal!
Barbara prepared a nice stir fry dinner. We were joined by Jody (her daughter-in-law)
and baby Sidney.
Tuesday was quite a long driving day, over 700 miles. Springtime set a
lovely scene along the I-80, with barns and silos dotting the landscape.
As the sun was setting behind me, like a glowing red ball, I was winging
my way through Northern Illinois.
Crossed into Wisconsin at Beloit, where my dear friend Carmen Leal's son
Nicholas attends college.
Good directions from Marie E. led me easily to their home in Cedarburg.
What a welcome sight! Quaint little bungalow, which reminded me a lot
of my mother's home in Hollywood. John and Marie had saved the fixing's
of a chicken burrito for me.
Wednesday was spent installing the roof rack, bicycle holders, car top
box, organizing for the second leg of the journey to New Hampshire.
John fixed a great Omelet for dinner. Knowing we had to get up at about
3:30 am Thursday, bedtime came early, about 9:30 pm.
1444 miles driven so far.
No Road Change found yet.
Second Leg HD Ramble 'Round the Colonies
A sign near a tall observation tower in Genoa, Colorado (along the I-70)
advertises "See Six States"; we weren't in Genoa, but Thursday,
April 25 John, Marie, and I did see six states!
We left Cedarburg WI at 4:00 am, so we could get through Chicago without
getting caught in rush hour traffic. We passed by Cominsky Park, home
of the Chicago White Sox. We drove on into Indiana, along the Toll way,
tossing change into bins, and forking over dollars at the tollbooths.
In Ohio, we saw Lake Erie, one of the five Great Lakes, and passed Jacobs
Stadium, home of the Cleveland Browns. Pennsylvania became the fifth state
along the way.
Finally, we made it into Southwestern New York. Saw a sign for the Peek
n' Peak Ski Resort (how about that, Debbie?) The scenery was just beautiful,
so quaint and pastoral. Near Friendship NY we went through a minor snowstorm!
Finally 792 miles from Cedarburg, we pulled into Ithaca, home of Ithaca
College and Cornell University. Ithaca is at the southern end of Cayuga
Lake, one of the beautiful and famous "Finger Lakes" of New
York. We stayed overnight with a friend of John and Marie's, Amanda Carreiro.
Amanda is an icon in the Frisbee community. She coaches the club team
at Cornell Univ. The room in which I slept was her "trophy room."
She had literally hundreds of Frisbees and Frisbee awards mounted on the
walls. I felt honored to be sleeping amidst them. Some even glowed in
the dark! Amanda has a white Standard Poodle named Duncan who was quite
a charmer!
Left Ithaca about 8:00 am Friday. It's springtime in the Catskills. We
saw dustings of snow as we traveled the old Catskill Hwy, originally laid
out over 200 years ago. Once onto the I-88, it began to snow! All three
of us said, almost simultaneously, "What were we thinking?"
But on we drove, through New York, into Vermont, and on to New Hampshire.
Everywhere we looked, a winter picture post card setting!
Finally arrived in Manchester, NH. Went to Applebee's for dinner, then
waited for Jim Pollard to bring Trish Gaughan and her 4-year-old daughter.
Trish will be driving the SAG van.
Jim, Trish, and Julia arrived about 9:45 p.m. or so. After visiting some
and reviewing tomorrow's route with Jim, we bid fond adieu, as Jim had
to drive back to Lowell.
Here we are, on the eve of the beginning of HD Ramble 'Round the Colonies.
Hard to believe that I have covered 2550 miles by van since leaving Grand
Junction on Sunday, April 21.
Road Change report: 2 cents
Miles driven today - 312
With love and anticipation from New England, Marie Nemec
Day 2 - HD Ramble 'Round the Colonies
The big day arrived, cool and sunny, perfect riding weather. After a complimentary
breakfast in the motel, we ascertained that Shane Benham (Pat Pillis'
youngest son) would not be coming down from his school at Croched Mountain,
so we were free to leave when we were ready.
At 9:30 we pulled out of the parking lot, and the ride has begun! John
and Marie insisted that I ride first, being the slowest rider. We have
devised a system where if I spot some "Road Change," I am to
shout "penny," "quarter," whatever, and point to it,
and John will stop and pick it up. Tag team Road Change!
We rode 12 miles or so, then stopped at a library and met up with Trisha
and Julia in the van. We continued riding along Mammoth Road, an old stagecoach
route from the 1700's, now known as Hwy 28 then 128 closer to the Massachusetts
border.
Trisha met up with us near Pelham MA, where we had lunch at the Geo. Muldoon
Sports Park. Both soccer and Little League games going on; typical Saturday
in suburbia.
Crossed over the state line into Massachusetts; saw an old boundary marker
as we pedaled along. From the state line, it was only about 8-9 miles
to the Doubletree Inn in Lowell. It took a bit of negotiation around one-way
streets to get there. The hotel is right along the Merramack River.
Everyone but me enjoyed a quick dip in the swimming pool. I took the first
shower, and started to catch up on my E-mails and journaling.
Drove out to the Tewksbury State Hospital. The campus is huge, with brick
buildings typical of the era. The original hospital was founded in the
1850's, and the wing that houses the HD Unit was built in the early 1970's.
The HD wing is part of the Center of Excellence of HDSA.
Kimberly Gleason, the Executive Director of the HDSA New England Chapter,
had arranged a tour and light dinner for us. The Medical Director of the
hospital, Dr. Katherine Domoto, escorted us around, along with Kathy Knoblauch,
the Clinical Social Worker. We were able to visit with a few of the 40
HD patients. One of them, Sally, presented each of us with a certificate
of appreciation for our ride. It was signed by a few of the residents
and staff members. It was very moving. This visit was John and Marie's
first meeting folks with HD; the plight of the more severely affected
always has me on the verge of tears. It was very hard for Trisha, too,
having just lost her husband Tom less then two months ago.
The light supper really hit the spot. We enjoyed sharing our brochures
and talking to the LPN's and other staff members. One of them, Terry,
is a cyclist and last year she completed a two-month ride for breast cancer
across the Southern Tier of the US.
Moving on, we drove to Jim Pollard's home, where we met his wife Maureen,
their daughter Mary Ann, two of three sons, one of their girlfriends,
Jim's brother Mark, his wife Marsha, and baby daughter Madison. Jim brought
out his post-card collection of old hospitals and state mental hospitals/insane
asylums. We were all very impressed by his collection of over 4,000!
Got a few more details of the Ramble ironed out. Bonnie Taylor and her
daughter Melody will SAG for us 2-3 days in Connecticut.
As the hour was getting late, we had to leave and drive back to the Doubletree,
only about a five-minute drive. Weather forecast on TV for tomorrow didn't
look good; rain is predicted ... we shall see ...
Lights out at 11:00 pm. The room was quite a sight, with trappings from
the five of us spread everywhere amongst two queen sized beds.
Miles - 31
Road Change report - 60 cents
With love from the road, Marie Nemec John and Marie Elsner
Day 3 - HD Ramble 'Round the Colonies
Lowell - Mansfield MA
It wasn't raining when we woke up at 7:30 so we decided to pack up and
ride as long as we could before the forecasted heavy rain came. And, of
course, by the time we were packing the van at 9:00 it was raining but
only lightly. We made our way out of town fairly easily and got onto hwy.
3A. The rain continued steadily and it was only 40 degrees, so we decided
to call it quits after riding four miles.
We put our bikes on the roof rack and Marie's in the back of the van and
proceeded towards Cambridge, stopping along the way for some Chai Tea.
We drove around and eventually found Harvard Square. The rain continued
as Trisha gave us a guided tour of Boston. We stopped for some delicious
bagels at a place called "Finagle a Bagel" where we saw our
first bagel buzz saw. The bagels come down a conveyor belt, pass through
a saw blade and get launched down to the other end of the conveyor belt.
Pretty cool!
We drove past Harvard, the Necco Bldg., where the chimney was painted
in pastel layers like the wafer candy. Also saw some of the famous brick
"brownstones," usually three stories and with cylindrical outcroppings
at the corners, complete with windows. Drove around the circumference
of Fenway Park (home of the Boston Red Sox), which is celebrating its
90th year.
Where Trisha lives in Mansfield is very close to Foxboro, with its cmgi
Stadium (home to the Super Bowl Champion New England Patriots). Parts
of the old stadium are still standing.
Finally we arrived at our destination, Trisha's house. It's a lovely two
story Colonial with basement, on a large lot tomorrow night John helped
out by securing bookshelves to the walls in both the kids' rooms and hanging
a couple of doors in the basement. Trisha ran out to pick up her son,
Thomas, from his grandma's house and stopped at the fish market for the
fixing's of an authentic east coast lobster boil. We feasted on corn-on-the-cob,
onions, potatoes, Portuguese linguisa sausage, steamers (both razor and
mahogany clams) and lobster all simmered together in the same pot. Marie
N. is not a fan of shellfish, but she enjoyed watching us learn the fine
art of disassembling a lobster and peeling the slimy, black skin from
the neck of the clams. What a feast!
Before turning in we read "Trisha's Story", a chapter in the
book entitled "Faces of Huntington's" that Trisha had written
about four years ago before her husband got really sick and died as a
result of the disease. It sure makes you count your blessings.
It's still raining steadily as we turn in, but tomorrow's a day off (like
we really need one after those 35 grueling miles of riding we've done
over the last two days), so it can rain as much as it wants.
Miles - 4
Cumulative miles - 35
Riding time - 33:18
Average speed - 7.2 mph
Maximum speed - 16.4 mph
Road Change - 13 cents
Total trip miles - 35
Day 4 - HD Ramble 'Round the Colonies
A drive through Rhode Island and to Cape Cod.
"Been there, done that" is what John entitled today. Somehow,
the schedule had a blip in it, and in effect today was a rest day. We
used it to accomplish two goals, going to through a portion of Rhode Island
and driving out to see Cape Cod. Neither John nor I had been to R.I. so
that was ceremonial.
Our drive through Rhode Island was over and done in 15 minutes. We saw
a bit of Providence from the Interstate. I forgot about buying a post
card from Rhode Island and affixing the new 34-cent stamp to it - rats!
A lovely low-bush "Cape Cod" sign within a rotary greeted us,
as we became first time visitors. Drove through Sandwich (est. 1637) and
Barnstable (est. 1639). Stopped at a quilt shop named Tumbleweeds; bought
9 batik lighthouse squares, and some other lighthouse fabric. Then drove
on through Yarmouth (1639), Dennis (1699), Harwich (1694) and finally
got to Chatham (1712). It's not the tourist season yet on the Cape, so
many businesses were closed. But not the Ben Franklin 5 and dime in Chatham!
Had lunch at Sandi's Diner, which had its visible ductwork painted like
a tree, complete with blossoms.
We drove on past Orleans, and Eastham (1651) through a "High Traffic
Enforcement Area" (whatever that means). Finally got to the more
scenic part of the Cape, that isn't so overdeveloped. We stopped at the
Visitors Center of the Cape Cod National Seashore, and watched a 10-minute
video with a voice-over narrative of Henry David Thoreau's observations
of Cape Cod. "A man may stand there and put all of America behind
him."
On to Nauset, with its lighthouse (red on top, white on the bottom) and
then a brief stroll down onto the sand. We three succeeded in touching
our hands into the surf, but I managed to get off balance and do a nice
drop and roll onto the sand! Lots of laughs.
Last major sight seen there was the Three Sisters, three lighthouses,
but only one had a lens on to of it.
On the way back, we took U.S. Hwy 6 (which also runs through Colorado).
Once off the Cape, we saw many trees along the I-495, which had blossoms
with colors rivaling autumn.
Trisha served a wonderful pot roast dinner, with homemade mashed potatoes,
carrots and onions, and salad. We had finished off that dessert from last
night.
Anxious to ride again; as I write this (Monday evening) I can hear the
rain outside. Hope it stops by morning!
No miles on bikes today
Driving miles - 225 to R.I. and Cape Cod
Road Change - 26 cents
Cumulative Road Change - $1.29
With love from the road,
Marie Nemec
John and Marie Elsner
Day 5 - April 30 - HD Ramble 'Round the Colonies
Mansfield - Shrewsbury MA
A beautiful riding day dawned for us, after rain during much of the night.
Fond farewell hugs to Trisha and the children. We had allowed 1 1/2 hours
to drive into Boston, but with using the HOV lane, we made it to Mass.
General Hospital in just an hour.
Met Jim Pollard at Bldg 149 of the Mass. General complex. Had to remove
the two bikes from the top of the van in order for the van to fit the
height limitations in the parking lot.
Dr. Marcy MacDonald met us so we could enter the secure lab. She gave
us a brief run-down on the history of her involvement in HD research,
and her association with Dr. Jim Gusella. They both got their PhD's in
Toronto, and Marcy joined his research team in 1985. These are scientists
who have made it their life work to try to find a cure for HD. They developed
a different approach than the classical one, and it's working.
Marcy and Jim have many assistants working in their labs, which adjoin
each other. There are many post-doctoral "fellows" too. Met
young scientists from Croatia, Italy, Spain, and Shanghai. For the heart
of research, it just doesn't get better than this.
Marcy spoke with such compassion about how very special HD families are.
The working together is different, she said, than say among Alzheimer's.
She is also very concerned about genetic discrimination via insurance
companies!
Asking Marcy to sign a ride T-shirt for me started a domino effect! She
took us back again to see the researchers, and they all signed T-shirts.
We left some ride brochures, and they will be buying ride T-shirts, tracking
us on our website, etc. We in the HD community are blessed to have these
brilliant individuals seeking a cure.
Jim Pollard led us out of Boston in his bronze '99 Saturn (with a CURE
HD license plate). We took the Mass. Turnpike to Hwy 20, and then continued
to Sudbury.
There, we met up with Kimberly Gleason with HDSA-Northeast Chapter. She
had arranged for a reporter and a photographer from Framington. Hopefully
we will get some good press to kick off May as HD Awareness Month.
Since we had no one but one of us riders to drive the van, I (Marie N)
said I'd drive. The van needed an oil change (3000 miles) although I had
the oil changed less than two weeks ago in Grand Junction. John and Marie
rode on while I took care of the oil change; then I found a Price Chopper
market and bought some food for us.
I thought they'd arrive in Shrewsbury before me, but they stopped at a
donut shop, and I drove past where they were. So I ended up getting to
Cindy Tylock's home first. After a few minutes of visiting with Cindy,
she had to meet her daughters who were getting out of school, so I drove
back out on Hwy 20 and after about a mile, who should I see pedaling along
up a small hill? Yep, John and Marie.
Cindy and her husband Jim prepared a great dinner: two different kinds
of grilled seasoned chicken, a pasta salad, corn on the cob, and fruit
salad. The Tylocks butter their corn by spreading a lot of butter on a
slice of bread, then placing the ear of corn cradled like a hot dog in
a bun. Then they rotated the corn!
Hoping for good weather to continue tomorrow.
Road Change - 30 cents
Miles - 17.5 (John & Marie)
Cumulative Ramble Miles ridden - 52.5
SAG miles today - 55 (Mansfield - Boston - Sudsbury
With love from the road,
Marie Nemec
John and Marie Elsner
Day 6 - May 1 - HD Ramble 'Round the Colonies
Shrewsbury - Springfield MA
When we woke up in the morning, we knew we were going to have a good day
riding. We were greeted by blue skies, with clouds, albeit cool and windy.
Fond farewells and hugs for the Tylocks; we were treated royally, even
with waffles/strawberries for breakfast as our send-off.
John drove the SAG van, and the two Marie's (dubbed "Tall 'n Marie"
and "Short 'n Marie" by Julia Gaughan) took off riding. We rode
14 miles (through Worcester and then some) until 11:10 a.m. We loaded
up the bikes, and then drove back into Worcester to Athena Diagnostics.
Athena is one of the companies that runs the test for HD. Just as we pulled
up, so did Kimberly Gleason. We went upstairs, and had a 1-hour program
with some of the employees.
Jim Scaffidi of Athena was the MC. First Janice Gedaminsky, Mass. Chapter
Pres. spoke, then Kimberly. The newly edited version of the Generation
2001 video was shown; it was a very emotional lead-in to my talk, entitled
"A Friendship Touched by HD." I recounted the familiar (to some)
story of how I met Carmen Leal on the Christian Writer's Group on the
Internet, and became grafted into the HD family. John added a few remarks
about their involvement.
Dr. William Seltzer then presented Marie N. with a check from Athena for
$250! Kimberly spoke again, about the calendar of events of the NE Chapter
of HDSA.
After a question/answer time, Jim Scaffidi drew the presentation to a
close. A nice lunch was then shared with Jim, Dr. Seltzer, Tim Beqiri,
and Kara, a genetic counselor. We got to see the $100,000 computerized
machine that Tim runs. Once a week Tim programs the machine to analyze
the blood samples and charts out the CAG repeats on HD testing.
The events drew to a close about 2:00 pm. After farewells, we left Athena,
driving back to where the two Marie's had stopped riding in the morning.
John off-loaded his and Marie's bikes, and they were off like a flash,
cycling along Hwy. 9, with Marie N. driving the van. They easily cover
12 mph, where I only seem to be riding at 8 mph.
John and Marie rode 36 miles to just outside Springfield, so Marie E.
got her 50 miles. We drove to the Bethesda Lutheran Church where we were
to meet Pastor Kurt Christenson at a Bible Study. He invited us to tell
about the Ramble; passed out our pink brochures too. Charlotte Reicks,
our soon-to-be riding partner, had arranged this contact. Thanks again,
Charlotte!
Finally we arrived at the home of Pauline and Bob Duffney. They are big-hearted
parishioners from the church with a truly intergenerational home. Denise
(Pauline's mother), their daughter Lisa, and her son Xavier live there.
In the past, they shared their home with a Cambodian refugee family, and
they have a Vietnamese adopted daughter, too.
Good dinner: chicken, mashed potatoes, corn, and sweet potatoes. We were
all hungry, as it was about 8 pm when we ate.
Rain is predicted tomorrow so our riding plans are indeterminate.
Miles: Marie N - 14, John - 36, Marie E - 50
Road Change - 77 cents
With love from the road,
Marie Nemec
John and Marie Elsner
Top
Day 7 - May 2 - HD Ramble 'Round the Colonies
Springfield, MA to Lee, MA (in the van)
Today we woke up early with the hope of getting some riding miles in before
the rain the predicted rain arrived. However, it started raining only
shortly after we awoke, so we enjoyed a nice breakfast and packed up the
van in the rain.
The rain continued throughout the morning as we drove through the beautiful
Berkshire Hills. Our scenic route took us into Great Barrington where
John and Marie enjoyed a cup of Chai tea (Marie N. ordered hot chocolate)
at the "Sip of Chicago" coffee house.
The Guthrie Center is in Great Barrington. They are hosting the second
annual Garbage Trail Walk this coming Sunday to raise money for HD. Woody
Guthrie is the only famous person who has died from HD. The Garbage Trail
Walk recreates the events that led to the writing of the song "Alice's
Restaurant." Arlo Guthrie started the Guthrie Center as a spiritual
community center. Arlo's daughter-in-law Lisa runs the Guthrie Center.
Lisa and Arlo's son Abe have two children: a son Krishna (10) and A daughter
Serena (4). The Guthrie Center is located in the old Trinity Church. It
has aluminum siding over stone block construction. Arlo bought it about
11 years ago, and set it up as a community spiritual center.
From the Guthrie Center we drove to Stockbridge and had lunch at the General
Store. We walked through the lobby area of the Red Lion Inn, a historic
hotel where the royalty stay when they visit the area. It was quite grand.
Up the road we visited the Norman Rockwell Museum. We wandered around
for a half hour looking and reading about the original paintings that
were on display. Then at 2:00 a tour guide took us through a couple of
the display rooms and gave us some background on the artist and his paintings.
Rockwell lived in Stockbridge fro- 1953 until his death in 1978. We enjoyed
the detail of his paintings, which express human relationships. It was
our lucky day, too, because there was a Charles Schultz exhibit, so we
read about the evolution of the Peanuts comic strip and all of the characters.
We drove up to Lee, MA, our final destination for the night. It rained
off and on throughout the afternoon but just lightly. It was also quite
cool in the mid 40's. We checked into our donated room for the next two
nights at the Best Western. M&M drove 3/4 of a mile up the road to
the Laurel Lake Center, the nursing home where Jim Pollard is the HD Program
Director. Jim wasn't there today, so they left a message with the receptionist
letting him know that we had arrived in Lee. The ladies then returned
to the motel. J & M napped while Marie N. drove into town to do some
errands.
Pizza was the dinner food of choice, so we went to the 51 Park St. restaurant
where they had wood-fired pizza. The menu contained an interesting choice.
You could have an original pizza or a white pizza. We tried to figure
out if this was referring to the crust type or the sauce type and had
to ask the waitress. She said that original was a pizza with sauce and
white was a pizza without sauce. Who ever heard of having pizza without
sauce? What's the point? We guess we're not in Kansas anymore.
After dinner (pizza with sauce) we returned to the room and discussed
plans for tomorrow. We talked to Jim Pollard and he invited us to have
breakfast with him tomorrow at the nursing home at 9:00 and then meet
some of the residents. We agreed since tomorrow is scheduled as a rest
day.
Hard to believe the first week of the Ramble is ending. It has been a
ride totally dissimilar to any of the other 3 Bike For The Cure rides.
With love from the Berkshires,
John Elsner and
the M & M's
© 2002 HD Ramble 'Round the Colonies, all rights reserved.
Site created and maintained by Levina
Design