This week I decided to start playing piano again, and I had my first Botox injections in my salivary glands to reduce saliva production because my tongue can’t help move saliva around anymore. I have been using medications for this, but they are variable in effectiveness and wear off after about 5 hours. Plus I have problems with saliva at night.
I Googled quotes about Botox and found some great ones. There were a couple related to Botox and Music (my theme for the week) :
“People say I look so happy -and I say ‘That’s the Botox'” – Dolly Parton
“But I’m just having fun playing and giving Botox injections to the older songs.” – Richard Marx
When most people think of Botox injections they think of its use in reducing wrinkles and helping people hope to look younger. It is also used medically for a variety of purposes.
We have a baby grand piano that belonged to Stan’s maternal grandfather. I played, starting in the convent at St Giles Elementary School with lessons from Sister Clarissa during the school day. Then I continued with classmate Mike Engel’s mom after school through high school. But I haven’t played much since.
When Stan’s mother sent the piano to us, she also sent her piano books. There is one book called Let Us Have Music for Piano with a lot of songs everyone knows. So I decided to work on “Home on the Range” first. I will play 15 minutes a day and work on that until memorized then move on to another song. I want to play songs everyone knows.
Our piano was built in 1889 in New York and moved to Nevada in the 1930’s. It had been in storage for many years and then Stan’s mother had it restored. We had a stuck key (low B) and it hadn’t been tuned for years, so we called a piano tuner, Larry Lonchar. His tag line on his business catd says “Approaching Piano Tuning as an art form, creatively.” It was interesting to watch him work.
It is pretty amazing what they were able to make in 1889, without modern technology to help shape the small pieces.
Because Nevada is so dry we have several cracks in the sound board. We will have Larry back to place shims to merge the sound over the cracks. We also got a humidifier/dehumidifier system that will keep the humidity at 42% constantly. I am happy to have my low b back and look forward to the sound when the cracks are fixed. And I will play as long as this disease allows me to.
Right before we left for my UCSF appointments, Andy passed his driving test. Celebratory music please! He is a careful driver and I have not liked chauffering without being able to talk. So while many parents may be filled with anxiety about a teenage son driving, so far I am just happy and proud.
After the Thursday 4 pm driver’s test, Andy drove to my dad and step mom’s house to stay for a couple nights, and we drove to Davis, California to have a shorter drive to my Friday 9:30 AM appointment at UCSF on Divisidero St.
Because of going to this new UCSF location, Google maps had us take the Richmond Bridge to HWY 101, then over the Golden Gate into the city. It was more pleasant than going through the ever present traffic jam in Berkeley before the Bay Bridge. We got a nice text from Andy: “I made it to school alive and no one else died.”
And now the Botox:
We liked both the med student and the doctor at the UCSF Movement Disorders and Neuromodulation Center. The procedure was explained thoroughly. They planned to start with a low dose at the top of my parotid salivary glands, near my jaw hinge in front of my ear.
Yes I was grimacing because it stung, but only for a few seconds. It should kick in in the next two weeks. Then it should last about 3 months, so I can again coordinate my Botox injections with my ALS Clinic visit. And I will report my results back to them and they will base the next step on my results.
When the appointment was ending we asked the med student for a lunch recommendation and he said the sandwich shop on the first floor is good. It was a little early for lunch but it was nice to be able to sit and have a leisurely one, and Stan loved the Shrimp Ceviche Tostada. After lunch we still had time to spare so we drove to St. Francis Yacht Club and parked right by the Bay and read our books and people watched until it was time to go to my 1:00 PM appointment at UCSF on Parnassus.
Again we saw a med student before we saw the doctor. We liked her too. We met with a respiratory therapist who found that my diaphragm is only slightly weaker than 3 months ago.(Good news). Then we met with my nutritionist who was happy with my stable weight. (More good news). The speech pathologist encouraged me to use my ipad with keypad when it is convenient because I type faster than I write on my Boogie Board and faster than I type on my phone. I will try to incorporate that into my life even though it is not usally convenient, and convenience is high on my priority list. I understand that it is hard for people to wait for me to respond writing on my Boogie Board or typing on my phone. We had a nice visit with the Social Worker. We then saw Dr. Rosow, who I had seen on my two previous visits. We were lucky to catch her on her last day before maternity leave. Her son is due to be born any day now. I like her because she always has at least one new suggestion to help me. This time it was papaya and pineapple extract supplements from Trader Joes to help with thick saliva. The doctor who supervised my Botox injections had recommended fresh lemon juice diluted with water sprayed in the back of my throat. Grinding up a tablet to put through my g tube is a lot easier and more comfortable.
Dr. Rosow ordered blood work to check my liver because I take Rilutek to slow ALS progression and it can damage the liver. We met with a physical therapist because I have awakened with neck pain. It seems to be the result of me sliding down the wedge I use to sleep upright in order to swallow my saliva and ending up with only my head on the wedge in the morning.
We decided that I should try an under knee wedge and ignored Stan’s suggestions of velcro.😃
We got my next appointment scheduled and went down to the first floor to have my blood drawn. I was impressed with the efficiency of the process – I was in and out pretty quickly and had my results by 9 PM that night.
We then drove to Julie Rodenburg’s beautiful house just south of Golden Gate Park and only a few blocks from the ocean. We had not stayed with her before and I had only met her on her visits to Nevada for family parties. But I have always liked her. Her grandmother was Stan’s great grandfather’s little sister and they were born in Scotland.
We visited for a little while and then got a tour of Julie’s beautiful house with a lovely center courtyard. And then we saw her gorgeous greenhouse and garden. She studied horticulture in college so her houseplants, greenhouse, and garden were all beautiful.
I love this special place on her mantle in memory of her husband. I only met him once, when he was very sick but came to Reno for Stan’s grandfather’s 80th birthday party. Julie shared that in the last few months with her husband she was diagnosed with breast cancer, so they were taking care of each other then as Stan and I are now.
We walked three blocks to dinner at Julie’s favorite restaurant which is Vietnamese with a French influence.
Stan and Julie split a fresh Dungeness Crab with garlic noodles, having started with a vegetable soup, and finishing with deep fried banana and ice cream. I tasted a noodle but I am so sensitive to salt now that it’s the main taste I notice.
We walked back to Julie’s and looked for the Nevada-Fresno State Mountain West Conference Semi Final on television but could not find it. So I got updates on my phone until they won. Yay!
Saturday morning was lazy with lots of sharing of stories, laughter, and Stan and Julie had a lovely savory Dutch Baby with fresh fruit on the side. It smelled wonderful. I also loved hearing fog horns.
Julie showed us some of her paintings. And then she showed us the books she plans to read this year, giving us good ideas, and she told us we could take any of the books in the guest room because that is where she puts her books when she is done with them and they are for guests to take. So we looked through them and took a pile.
Next time I will get a photo of the front of her house which is lovely also. It was so nice to get to know her better. When we were remembering Aunt Jean, Stan’s Grandpa’s youngest sister, and I said she was wonderful, Julie said it runs in the family. Yes Julie is wonderful too. And Stan is also!
Being on the western side of the city Google Maps again sent us over the Golden Gate Bridge to head back home.
We were thankful for Google Maps again when it sent us up to HWY 37 to cross over the north end of the Bay, because right after that we heard on the radio that I-80 was closed in Richmond because of a shooting.
We were treated to nice views of the full moon as we crossed the Sierras
We again couldn’t find the Nevada Wolf Pack vs. Colorado State Conference final game on the radio and had to wait for Andy’s text updates. It was a nail biter but our team pulled through and got a ticket to the Big Dance – the NCAA Tournament. Double and triple yay!
We met my dad and Anita and Andy at Moxies for dinner. I had a headache and wanted to get my supplement from Trader Joes. Since Andy had driven to dinner I was able to leave early and go do that.
Then on Sunday morning I opened the door and found this on the mat:
The hand delivery post office in the Galapagos works pretty well! We are sorry we didn’t get to meet the folks who delivered it.