Bike for the Cure

Bike for the Cure XX

Bike for the Cure - Bike for the Cure XX

Daily eMail – 6/05 – 6/08

Day 9, Tuesday, June 5, Santa Barbara to Port Heuneme – 41 miles

With Marie’s alarm chirping at 5:15, we reluctantly arise, all in the same room at the church. Did I tell you this is the 3rd time I have stayed here — beautiful Spanish style stucco with red tile roof– 1999 with Evelyn as we bicyled our 6-month tour, and 2001 with Marie from Canada to Mexico with HD convention in San Diego. However, 14 years later, different pastor and secretary, Cindy.

Now rush through dressing, gulp breakfast of cereal/fruit, peanut butter and jelly sandwich for MA. Our bags gradually accumulate in the hallway in a row for loading. I wipe chain

and tires as I was told to do every morning in 1992 with first cross country ride from Utah to Kansas by an “old guy” of 72. Check odometer magnets on front wheel as they somettimes get changed. When we load all our bicycles such as our trip to Solvang, my bicycle goes inside, lying flat on top of the luggage as it is small and light, and magnets get moved as sliding in and out. Other 3 bicycles on bike carrier on back.

7 a.m cloudy, lights on, prayer and off we go–MA, Sherry and me with Marie driving, and she ends up driving the whole trip as we were off and on bike paths, streets, freeway all day with lots of changes. She is very good at keeping track of us, with map always handy with which she and MA confer every stop, and Sherry is a whiz with her GPS, but we can still get lost. I cannot drive in this traffic and would be lost a lot. Marie grew up in Hollywood, so not intimdated like I am.

We head for waterfront as our route along ocean today, first crossing Hwy 101. Lots of traffic all day. As we approach the ocean feel mist of the fog, cooler temp, palms along street, people jogging, walking, bicycling the same bike bath as us along the sandy beach, waves crashing on shore.  At busy intersections, we and cars take turns, traffic lights at others. We on and off short bike paths as they end back onto streets, looking for the one we have heard goes all the way to Ventura, following Pacific Coast bicycle green signs. At times we run our bicycles across intersections when have to turn left, once had to cross to other side of road as our side ended, but today our easiest and almost no hills. We bicycle thru areas of shops,  areas of home, areas of campers, from beach after beach as whole day stayed cloudy.  At one point, MA could not reach Marie via phone for directions for half hour (very unusual). Later Marie tells us she was waved down by a man in a parking lot who noticed the HD signs on the van, girlfriend’s family has HD. She spent half an hour talking with them.

At 8:45, 12 miles, we stop at coffee shop, MA for chili, Sherry muffin, Marie and I visit with 2 bicyclists outside, father and son from San Francisco bicycling to Malibu to visit friend. Scott, father, grew up in Boulder, had 2 friends there who had HD. Justin 15.

Bicycles really take a beating on these rides, as shoulders and bike paths can be very rough, tree roots crossing, only occasionally smooth. Ocean on our right all day, Hwy 101 right beside us on left, then up on ledge above us, high hills on left, very narrow valley here, also RR track on left, then right as we carefully cross tracks (always a hazard). We cross over Hwy once, under it 3 times, watching for typical trash when go under.

At 23 miles, 10:30 we are finally on recently-opened Ralph Fertig bike path to Ventura. Wonderful, smooth, right at ocean edge, with gray guard railing on left with Hwy 101 traffic, and gray railing on ocean side. See surfers all along beaches today. Here is a several mile area of motor homes parked vertically end to end, see it costs $30 a day to park here. See surfers, fishermen, very few people out from all these units. Hundreds Inside? It is cool with east wind from ocean on our left.

At Emma Woods beach have a hill, and bicycle into Ventura at 30 miles.

We are now bicycling on the smooth wide plaza area typically in front of the high rises and shops, right at ocean edge. Here is Beach House Fish and MA wants fish and chips at 12:30. She and Sherry in, Marie and I find parking spot with me bicycycling behind her and enjoy PB sandwich, visit with couple from Australia.

At 1:30 and 41 miles, we bicycle into Port Hueneme, our earliest destination arrival. Big naval base here with deepest harbor along coast. Marie here with van in parking area and now use Sherry’s GPS to navigate several streets to an apartment which Marie’s friend Doris (lives in Ventura) has rented for us! It is in a triplex with lockbox (we have combo).  Not the Holiday Inn but we are grateful to have kitchen, living room, 2 bedrooms, 1 bathroom with lots of towels!  Marie and Doris friends for 50 years, young families spent time together before Nemecs moved to Colorado. I also know Doris from 1999 when she lived in St. Louis and hauled our gear for us one day in that area. She arrives at 2 p.m., and will return at 5 with her granddaughter to take us to dinner! We enjoy next 2 hours of “free time” to shower, coffee for Sherry and me, check emails, I clean cooler. Many of you have written and always look forward to upon arrival anxious to connect and see who has written. Have different wifi and passwords every overnight.  Enjoy and appreciate your messages. Text pastor for tomorrow night, who promptly responds. Marie and MA look at tmro route.

Doris takes us to “real” Mexican restaurant with menu in Spanish and English. I have wonderful fish burrito. Back at 7:30 and we all decide to go to bed early, a luxury. Wide soft couch in living room for me is wonderful and quickly asleep, waking refreshed at midnight to write this email. Now praying internet connected and can send emails and post on facebook.  Blessed by this day again, and grateful.

Charlotte


Day 10, Bike 2018, Wednesday June 6, Port Hueneme to Culver City, 65 miles

Last evening, Tuesday, read on computer that it was 92 in Grand Junction, while 62 here in Port Hueneme! This morning 53 as up from couch in rental apartment in Port Hueneme courtesy of Marie’s friend Doris. For breakfast I have the rest of the huge fish burrito from the Mexican restaurant last evening — still delicious. Our usual rush out the door with always anxiety as we lock the door that hopeful we have not forgotten something and cannot get back in. Gray and foggy, lights on.

Pray, and MA, Sherry and I start with around the block and turn left on Victoria with very fast traffic at 7 a.m, then left on Channel Islands Blvd with very fast traffic, lots of traffic lights when pedal hard to keep up with gals to go through together, working hard. Left on Patterson and stop at McDonalds!  MA would like an egg McMuffin for breakfast. A donor mailed Marie a gift certificate to McDonalds for us to use on trip. With only today and a short day tmro, decided need to begin using it, and she and Sherry have breakfast as Marie and I relax.

Continue on Channel Islands road and notice young men and women jogging on right beside a golf course. They are all dressed basically the same. Then notice the black 6 foot high chain link fence on our right separating us also has 3 rows of barbed wire at the top!  See the word NAVY on a T-shirt. Oh, on our right is the naval base, and as turn right on Ventura there is a nice bicycle path which continues the whole 3 miles as we pass base golf course, area of stores, big area of housing,  cars, maintenance, all within the black fence, gate with sign of Naval Base Ventura County.

Go another mile and notice black fence with barbed wire starts again and as bicycle along this see this is US Air National Guard base, with 3 big planes parked. This goes another 3 miles and is called Port Mugu base. Pass US Navy Seebee Museum. At the end of the fence as we turn a corner there is a display of a small plane (rocket launcher?) and several different missles each on a pedastal with sign of US Navy Missle Park. As we turn right on Huenema Road, notice that straight ahead would take us to OXNARD (home of friend’s family).

At 12 miles we turn right onto Hwy 1. We are now on the coast right beside the ocean on our right with high hills on our left, with only room for Hwy 1 with plans of van and bicyclists to next meet at Leo Carillo Beach (about 10 miles) and as bicycle MA way ahead, Sherry sometimes in front of me, sometimes behind — very spread out, up and down rolling hills. Sometimes a few businesses on left or right in single row. Homes are built on top of, on sides of the high hills on left, no room down on the coastline.

I actually passed a bicyclist! A gal riding a stand-up bike, and from behind I could see technique. Legs pedaling in gliding motion and with each pedal stroke arms went from left to right and right to left at chest height (for balance?) Standing up is more wind resistance (maybe why I passed her). However, she could see a lot more than me, as on lower handle bars bent over and she standing.

Area of construction ahead with orange cones diverting traffic only into left lane. I bicycle here in right lane of road (instead of shoulder), knowing no cars in this lane, and road smoother, faster than rough shoulder. However, when come to where construction happening, have to also go into left lane of traffic but short time just around trucks and back out onto shoulder with big hill right here. Looking for Leo Carillo Beach sign, do not see MA way ahead or Sherry behind me. Odometer says 24 miles, have probably missed it! Take out phone to see if message, no. As pondering, MA and Sherry arrive in van. Yes, it was at the area of construction and I did not see sign with paying attention to construction. Now Marie is bicycling and they are driving next 8 miles to Dan Blocker beach for next meet up. Now slower pace but when Marie turns on her ebike (mostly on hills), have to pedal very hard to keep up, to catch up.

So Marie and I continue up and down hills with busy beaches all along–area of surfers. Gaited driveways of home begin on right and realize we entering Malibu area. MA and Sherry stopped here at my 32 miles. We all load bikes to drive thru construction area with huge hill. MA and Sherry begin bicycling again, I need rest and Marie ok with driving– now nearly 11 a.m.

Marie and I stop along way for bicyclists to go by, then drive on to Santa Monica and park at the Santa Monica Pier to take picture of gals as they on bicycle path along beach. Now 12:15. Gals look for restaurant, Marie and I munch in car. They will continue on bike path to Washington Street, then another bike path to home where we are staying.

Marie and I decide to spend time at the Pier with many shops, crowded with people,  and the famous carousel which Marie rides and I take picures. We actually meet an HD family here who who are at convention, now touring the Pier. This is 4th time I am here, twice in 1999 for beginning and end of 6-month around US with Evelyn, then 2014 with Marie on coast ride, now 2018!  Picture of End of Route 66 sign (Chicago to Santa Monica) which we have ridden, altho going from here west to Chicago.

Call pastor for directions to home in Culver City and we arrive there just as the gals on bicycles do from bicycle path!  Driving for us very slow with many lights, lots of cars and it is 3 in the afternoon, not even rush hour. Background is that I contacted a church along Hwy 1and pastor invited us to stay in home 6 miles inland (west) in Culver City. This great for comforts and also puts us very close to LAX convention hotel. They both Methodist ministers at different churches, and husband gone overnight. After showers, dinner of lasagna and salad, leave at 6 p.m. to attend function with pastor in downtown LA. It took us an hour to get there. Did not go on expressway because bumper-to-bumper, took residental with many streets, lights, also very slow. Parked in paid lot and walked by very tall, very modern buildings to little outside ampitheater in a corner of building filled with people, program sponsored by a citizen group for housing for homeless. Six previous homeless people tell their stories and how finally getting a place of their own gave them back their lives–a gal with mental illness, a guy with 22 years of drugs, a Chinese gal with no family, each story spellbinding and tragedy of living on streets, difficulties, unimaginable to me–the need for housing as it is first step in recovery, a normal life, hope.

Drive back to home on interstate and terrifying — packed with cars both ways, very high speeds, lanes changing all the time with on and off ramps, lanes ending, had to keep changing lanes, dangerous with packed high-speed traffic. We all so glad to be home at 10 p.m.  Warm cup of milk calming. Pastor gets out laptop and MA and she chart route for tomorrow. We will all bicycle in to hotel and come back for van later. Seems simple.  . To bed on cot thanking God!

Charlotte


Day 11, Bike 2018, Thursday June 7, Last day –  Culver City to LAX Mariott – 5 miles

Soooo nice to stay in bed until 6 a.m.!, as we know we have a very short ride today, only 5 miles, the shortest we have ever had on the final day, from Pastor Janet home in Culver City to front door of Marriott at LAX (Los Angeles Airport). I think I told you that I contacted her church close to Hwy 1 on the coast and she invited us to their home, 8 miles inland to the east, putting us this close to the Mariott. After breakfast of cereal, etc., we pack all bags into van as all are bicycling, leave van here with plan to come back for it later, and leave at 9 a.m., Pastor Janet back to normal with a full day of meetings of different groups–school superintendant, youth group, etc.

We have the route from McDonald street garage (where bicycles stored)– turn right on McDonald street, L on Mesmer, slight L on Centinela, R on Sepulveda, L on Manchester, R Airport Blvd, L into Mariott Century… seems simple.

It was easy and quiet on first 2 streets, but upon turning left onto Centinela, we were suddenly in very high speed, 6 lanes of bumper-to- bumper traffic. Now suddenly seriously concentrating on staying on the shoulder, as cars fly by very close. I can now understand driver frustration/anger as watch cars go from lane to lane, close sometimes, horns honking, everyone in a big rush. Right on Sepulveda okay, but the left on Manchester, we walk. We did not try to get over into the left lane of 3-lane traffic to turn left with traffic. We used traffic lights and walked in crosswalks, first south, then east. With right on Airport Road, traffic only 4 lane, but no shoulder and rough old road! It was a relief to turn left with virtually no traffic into the Marriott Century driveway at 10 a.m, an hour so only 5 mph, but no way to go fast with all traffic and many turns. We okay with slow today. And as pull into Mariott driveway, hear cheers and here is a small group of welcome including the family we saw yesterday at Pier, HDSA photographers,Jimmie Pollard from HDSA and others. That was nice!  Hard to realize we are really here! Ride over, safe and grateful!

MA and Sherry now bicycling back the 5 miles to get the van with all our stuff.

A young valet leads Marie and I to a room in lower level where he locks our bicycles in valet room.

We then go to HDSA conference center to say hello to Robert and Mynelly from HDSA New York and Mynelly tell us that our Herrera family from Grand Junction is coming. We were not sure when we left as Jaime (13) was having seizures with his HD, at Children’s Hospital 5 weeks.  The Herrera family received a scholarship from HDSA as a first-time family attendee with all expenses paid, so we all very much hoped they would be able to come, and they are are already here as Marie learned by a text.

Gals are  back with loaded van which we unload, get into rooms, and begin settling in. PB and lettuce from cooler for lunch, showers, and even a nap. Could not get connected with internet all afternoon, could not get service when called special phone number–call back later. Finally, in frustration, at 7 p.m. took tablet to lobby where young gal and guy at front desk try and young valet comes over and says he can do this and quickly gets me connected, both in lobby and in my room—the secret was the misspelling of the word Mariott… spell Mariot with only 1 T, which he says he discovered by accident,  and you connect! Wonder if whoever set up this program misspelled it by accident and now it is the way to connect.

On to Reception at 7 p.m. where ballroom packed with people, very loud music, booths all around the room with games like at a carnival, and finger food — very good little hamburgers, chicken on waffle sticks, veggies, humus, etc. Here our bicycling group was introduced with acknowledgement of 20th year, $22,500 this year, $74,000 in 20 years. Visit with people we know from past conventions from all over US. This largest HD convention ever with over 1000 attendees! More tmro –to bed at 10 p.m. thanking God for delivering us safely once again!

Charlotte


Friday, June 8, HD Convention in LA

A day filled from yoga at 7 a.m. to youth talent show ending at 9 p.m. Yoga by the outdoor pool was chilly, but 20 or so here including MA and Sherry. See Nancy from Maine for first time. In 2010 when we bicycled from Maine to Raleigh, NC, she and husband took us in, and nephew Seth provided room for us in Boson as we went down coast at hotel where he worked. Her mother, sister, nephew all with symptoms. And Giovanna arrives, bicycled with us 3 times in the past, father with HD, just in at midnight from Mexico. This year’s ride too difficult for her with many hills.

To breakfast in crowded ballroom. Most meals provided as part of registration fee. For this meal, we received a ticket for $8 and I chose yogurt/fruit, coffee. As we ate, conference started with welcome by CEO, Louise, and Dr. Arik, Psy.D., 3 huge TV screens so all can see and hear. More than half of 1000 attendees here for first time.

Keynote speaker Anna Canoni, granddaughter of Woody and Marjorie Guthrie, tells story with videos of their lives with HD at a time when noone knew anything about it.  In early 1940s, they met in New York, she a professional dancer with Martha Graham, he a writer/singer of songs, always with guitar slung over shoulder, walking slightly crooked. He came here from Oklahoma for production of songs, songs about life, a couple about his mother with symptoms, ending up in mental institute. They had 4 children, she performing and teaching, he writing, publishing songs. First symptoms noticed one day when he was walking without guitar and still walking slightly crooked, off balance. Next years of progressive symptoms slurred speech, angry outbursts, fatigue, trouble swallowing with misdiagnosis of alcoholism, mental illness, in and out of hospitals with finally diagnosis of HD with doctors saying they could do nothing. Years of struggle living at home, then hospital, passing away.

Marjorie had a new determination to help HD families, finding them, a chronic disease which rquires a variety of care, and in 1967 founded the Committee to Combat HD with 3 other HD families, purpose to bring attention of this disease to world, doctors, scientists. This has grown to present HDSA, worldwide, largest neurological disease organization, leader in research. She spent the rest of her life traveling to find families, giving info about care, meeting with doctors, congress, scientists, wrote a small book.

Second keynote speaker Bill Johnston from San Diego was manager with San Diego Chargers football. When Chargers moved to LA, he and family did not because his wife was in a 24 hour care nursing home where she was receiving excellent care for her HD. He is now with San Diego Padres baseball in managment. Story of devastation of disease, hardest day of his life when they had to tell young children, a son and daugher. Realizing research was the only way to ever find a cure, he determined to raise funds. He is a runner, so began participating in runs, always pushing wife in front stoller, asking friends for donations, began sponsoring galas as he knew the “right people.” Up to now this has raised nearly a million dollars for research and care of families.

Son has tested negative for defective gene, daughter 22 has not tested.

Rest of day spent in hour-long workshops with tracts of workshops each hour for At Risk  (parent with HD), New to HD, Living with HD, Gene positive/not symptomatic, Caregivers, Research, Youth/teens/young adults, advocacy. Lunch in ballroom with recognition of local chapters around US for fund raising events, best publicity, etc.

Last workshop for me today at 5:30 was Advocacy with push this year for change to social security benefits. Once a person is diagnosed with HD, they must wait 2 years to receive social

security financial help. This 2-year period is very difficult as patients already cannot work. In GJ, Genevieve had to move back in with mother, no money to see specialist or money for medications. Push is to contact congressmen to sign on to bill already in Congress. Our support group will do that just as we did 2 years ago to get diagnosis of HD updated.

Bedtime. Praising God for day – seeing again Dr. Jane Paulson from University of Iowa HD research center which we visited when bicycling from Kearney NE to Minneapolis who because of illness missed conference last 3 years.

Charlotte