A Week of Love, Connection, Connections, and Hope

While Andy was at camp, Stan and I had a busy week of travel. But first, after Andy left on Sunday, we had a lot of visitors. Stan’s friend Marc from work stopped by to visit. Then my neighbor and friend Amanda stopped by for a visit. Thanks Amanda! We are lucky to have your family as neighbors.

Then Stan’s uncle Pete and his wife Mariana, from Corvallis, Oregon, visited. They were in town for the 150th anniversary of the two room old Huffaker School that is now at Bartley Ranch Regional Park. Pete and his sister Sally, Stan’s stepmom, both attended that school when it was at Huffaker Lane and South Virginia. We had a nice Italian dinner at Zozo’s with them.

We had not seen them in many years so it was great to reconnect.

Then Monday morning Stan and I took a 6:30 AM flight to LAX (Los Angeles). We saw this great Lexus while we waiting for our Uber.

“Sorry Dad”

We went for my screening appointment for the C9orf72 gene mutation biomarker study being conducted by Washington University in St. Louis, Missouri. Cedars-Sinai Medical Center in L.A. is the closest location to Reno for me to participate. We arrived at 8 and my appointment was not until 11 so we were able to have breakfast before getting our checked luggage. We Ubered to Cedars-Sinai even though we would be early. We had a nice chat with our Uber driver who was from Bogata, Colombia. His brother is a professional bike racer here in the U.S., so he had just watched the Tour de France like we had. He knew a lot about the successful Colombian riders in the Tour. He also did a good job of convincing us that we should visit Cartagena, Colombia, an old colonial city with many beautiful old buildings. He said Bogata is not safe, but it would be difficult for us at such high elevation too, since Stan and I both have lung issues. I still love Spanish so it was an enticing idea.

At Cedars-Sinai, I signed the consent papers for the study, which will look at the C9orf72 gene mutation for each ALS patient in the study to see if there are differences in the mutation that correlate with the way and the age the disease presents itself. I went through a detailed medical and family history, had my current ALS-FSR measured (a measure of disease progression by loss of functionality), I had blood drawn, and I had a neurological exam. Stan also had to fill out a questionnaire about me.

The gene mutation occurs as a repeat of part of the genetic code. If the repetitions are above a certain number the patient would eventually develop ALS or Frontal Temporal Dementia (FTD) or both if everyone lived to be 150. For those of us that were born with this mutation, it is believed that our bodies are able to overcome the damage the mutation causes until they can’t anymore, and then the disease manifests itself.

This study must be completed prior to clinical testing of antisense gene therapy, which could begin as early as 2018. They said that a spinal fluid test is optional. I volunteered because I want to help advance the science as quickly as possible, for my siblings, cousins, son, and niece and nephews. The spinal tap will be scheduled at a later date.

We were done in time to check into our hotel and walk to a nice lunch. Then Stan took a nap and I went to the pool and did my aqua fitness.

Then the next morning we had breakfast by the pool.

The plan after breakfast was to Uber to Orange County to visit with Lynne and Augie Nieto. Augie is Chairman of the Board of ALS TDI and Lynne is on the board too. We ordered Uber at our hotel and soon got a call from a driver who said she couldn’t get there due to a street closure for tree trimming. She asked us to walk two blocks to the other side of the tree trimming.

So we did. You can see our hotel in the picture – the big building two blocks away. Then Uber called to tell us the driver was at our hotel. Big Uber Fail! They sent another driver, who picked us up and drove us to our destination. She had all types of phone charging cords which was nice. My only complaint was either really bad shocks in the car or really bumpy highway or both, because it was difficult to knit on the hour plus ride. We arrived just after 11.

Lynne and Augie welcomed us to their beautiful house on a cliff over the Pacific Ocean. Augie has had ALS for 12 years. He started the fitness company that made Life Cycles. His Augie’s Quest raises millions for ALS TDI each year. We talked about fundraising we could do in Reno. Augie showed us the trailer for the new documentary about him, as well as a television news segment about him working with Project Walk, a group that works with spinal injury people to help them walk again. Augie is the first ALS patient they have worked with. He was able to walk his daughter down the aisle at her wedding, with some assistance. But even months before, that wasn’t imaginable. He worked out every day very hard to get to do that.

I told Augie that I like his song, Augie Nieto by Five for Fighting. The song ends with a quote from Augie: “It’s not the breaths you take, it’s how you breathe.” Beautiful. They liked my ALS SUCKS t-shirt. I said I like that it has a turtle on it because we are still ourselves inside our shells of ALS bodies.

They had a meeting at noon and we overlapped a bit so we met a lot of other very nice people.

Then we had a very nice spot to wait for our Uber ride back to LAX.

We thought it odd that were lifeguards so high up the cliff, but it turns out they were counselors for the Junior Lifeguard Camp for kids. Parents were coming to pick up their kids.

We arrived at LAX at about 3 PM and our Uber driver told us that we were smart to get there before 3 because traffic later is much heavier. He said that 2 out of 10 rides that he takes to LAX, the passengers miss their flight due to traffic.

This time we were changing planes in Las Vegas. We saw this sign at LAX.

Can someone from visitRenoTahoe.com please explain what demographic group you are targeting? It wasn’t mine, because I don’t get it.

Our flight out of LAX was delayed due to a crew delay. We ended up landing in Vegas when our next flight was due to depart. Tight connection. We rushed to the next gate and the gate attendant said, ‘The Macdonalds?” because we were the last two they were waiting for. He said they would wait for our bags too. Nice #Southwest. Even with this delay we arried in Reno on time.

Then we had two nights and one day at home. It was a day of recovery for me. Stan didn’t get to rest. He met a friend for breakfast, went to wound care (wounds on his legs don’t heal due to Prednisone), and had lunch with another friend. He rested in the afternoon. I went to 5:30 pm Aqua Fitness. It was a great class – we kneeled, sat, and stood on boards which is a great core workout.

On Thursday we drove to San Francisco to meet our friends Barb and Barry from Ottawa, Canada. Barb had visited us in Reno last fall. Barb was in San Francisco for a geriatic pharmaceutical convention which ended the day before. We checked into the Bed and Breakfast and then met Barb and Barry at the cocktails and hordeurves downstairs.

This was the first time we met Barry. We all had a great time. That night we ate at a Morroccan restaurant called Mourad that was very nice and had great food  (it looked and smelled great to me).

The beautiful wood at the entrance.

Then on Friday, we did a segway tour of the city. Barb said they had always made fun of the segway tourists, but secretly they wanted to try it!

We had great training, first right outside the segway tour place and then in a parking lot.

Stan was the first to try. That is our great Irish tour guide behind him.

We were in a group of 8, the 4 of us and a family of four with two teenagers. We all picked it up quickly. The change of balance is all in your feet so it seemed similar to regular downhill skiing. We stopped at a museum with arcade games from a hundred years ago and newer, along with the first photo op.

Here we are with Alcatraz in the background.

Then we went to the municipal pier, aka the Segway raceway. Stan really enjoyed this part.

Barb with Coit Tower in the background

We then went to the public parking lot by St. Francis Yacht Club where good pictures of the Golden Gate Bridge could be taken. It was partially fog covered.

The next stop was the Palace of Fine Arts. I had driven by countless times but never stopped. It was so beautiful.

And then, because our group all caught on quickly, we got to go up to the top of Lombard Street and ride down. This was a highlight for me – both the steep climb up and the winding ride down past all the beautiful houses and flowers. We were instructed to refer this as “chocolate” because not all the groups that left with us got to do that.

After the Segway Tour, we had an In N Out Burger lunch so Barb and Barry could experience the California icon. Then Stan and I headed back to the Bed and Breakfast to rest and Barb and Barry went to the Exploratorium.

That night we met Jen from ALS TDI and her husband Jimmy at a Thai restuarant. We had a lot of laughs. What a fun group.

The next morning, after a final breakfast together, we had to say goodbye. We were headed back to Reno and Barb and Barry planned to take the ferry to Sausalito and walk back over the Golden Gate Bridge. They would fly to back to Canada the next day.

My eyes are closed, oh well. It was a nice parting breakfast discussion, including when we could possibly meet again.

We drove back to Reno and got there just in time for Stan’s wound care appointment. Another close connection. After that we went home and saw Andy who had arrived home from camp. As if we hadn’t already done enough this week we went out to Animal Ark for their Cheetah Dash. Animal Ark is an animal refuge that takes injured or abused wild animals. A few times a year they invite people out to watch the cheetahs run. They have devised a very fast pulley system to pull the lure that the cheetahs chase. The fastest one we saw went 50 mph.

The best thing to come home to was our son.

3 thoughts on “A Week of Love, Connection, Connections, and Hope

  1. As always, loved to read of your adventures! I’m a cycling fan as well, and agree Colombian cyclists are some of the best, certainly at climbing. Must be all that high altitude riding at home!
    The cheetah dash was especially interesting. And, you got to meet the famous Augie, what an honour!
    A friend of mine’s Dad passed after a battle with FTD, and she goes for testing with her sisters every year. Not testing to determine if he’s passed on the gene, but testing for research. I wish there was more collection of data in Canada, like you’re doing.
    Cheers! ❤

    Liked by 1 person

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