I hear the train a comin ’round the bend
I ain’t seen the sunshine since I don’t know when
Well I’m stuck in Folsom Prison and time keeps dragging on
While a train keeps a rollin’ on down to San Antone
Well when I was just a baby my mama told me son
Always be a good boy don’t ever play with guns
Well I shot a man in Reno just to watch him die
When I hear that whistle blowin’ I hang my head and I cry
Well I’ll bet there’s rich folks eatin’ in some fancy dining car
Probably drinkin’ coffee and smokin’ big cigars
Well I know I had it comin’ I know I can’t be free
But those people keep a movin’ that’s what tortures me
On Saturday we met our friend Paul for lunch in Folsom, California. After a Mexican lunch, we decided to tour the Folsom Prison Museum. When I googled the lyrics for Johnny Cash’s famous Folsom Prison Blues, the analogy to ALS struck me. “But those people keep moving and that’s what tortures me.” For ALS patients their own bodies become prisons while their minds keep working. Sort of like prisoners. The museum had a large section of crafts made by the prisoners – they had time and their minds still worked. This large Ferris Wheel made of toothpicks took a long time to build.
Well if they freed me from this prison if that railroad train was mine
Bet I’d move it on a little farther down the line
Far from Folsom Prison that’s where I long to stay
Then I’d let that lonesome whistle blow my blues away
For ALS patients, to be freed from our ALS prisons we would gladly hop on that train and let that lonesome whistle blow our blues away.
Those of you who know Paul and Stan and know how their minds work together will see the humourous mild irony in this picture of them in front of Folsom Prison.
Like the prisoners enjoying Johnny Cash’s concerts, ALS patients can continue to enjoy music too, because hearing is not affected. On Tuesday we enjoyed Andy’s Reno Philharmonic Youth Orchestra concert with my dad and Anita and Stan’s cousin Lisa. It was amazing to hear the quality of sound coming from the students in the three orchestras. The students range in age from 7th to 12th grade. Andy’s orchestra even had ballet dancers for Aaron Copeland’s Rodeo which was written as a ballet.
On Friday I had my salivary gland Botox injections and my ALS clinic appointment at UCSF. My takeaways:
Botox – we had a long talk with the doctor about my mucous problem and drooling when the Botox wears off and he adjusted the dose and made my next appointment in ten weeks instead of twelve
Nutrition – I am maintaining steady weight which is good. It was recommended that I add Senna once a day to try to regulate my bowels.
Neurologist – she verified my slow progression and referred me to an Ear, Throat, and Nose Specialist for my allergies.
Speech – I told her that I never want to be unable to communicate. She gave me a low tech letter board like the one my mom had but this one has a laser pointer that can clip to glasses or a visor and it has commonly used words on it. My mom’s only had letters and we had to point to each letter until she nodded. I now realize how much mom had to say but she could not. I remember when she wanted to tell me something and she spelled out I love you. I have enough trouble saying all I want with my electronic text to speech.
Social Worker – we discussed upcoming travel and she facilitated a letter for the airlines and TSA so I can carry my medical equipment on the plane with me. I had all of my equipment with me so the letter contains all the serial numbers.
Respiratory – we did not attempt the forced vital capacity or other normal measurements because of my vocal chord involvement in my breathing. But she did measure my normal breathing CO2 output because I have been a little more breathless doing housework, and ordered overnight pulse oximeter study, and increased my Bipap pressures because I somtimes wake up with headaches.
Research Project – we had participated in a blood draw research study at the last clinic visit where I was the patient and Stan was the control. This time we each had to fill out a questionnaire.
Blood work – it was nice to be able to go downstairs and get it done
We are blessed to have a wonderful relative to stay with – Stan’s dad’s cousin Julie. We love her and she lives close to UCSF.
I am on the slow train to the ALS prison. I don’t know why my progression is slow. But I am a patient fellow for the ALS/MND International Symposium in Boston starting Friday and I will represent all ALS patients. Please send me your questions and comments for researchers and I will try to get answers. You can comment on this blog or on Facebook or on Twitter.
I will not write a blog next Monday. But I plan two Boston blogs: one from the patient fellow perspective and one from the visiting family perspective. I will be visiting my aunt and uncle the first night and my godmother the last two nights including a lunch with my mom’s cousin, with the conference in between.
The title may be misleading, but the odd semicolon is intentional. This week brought family visits which were wonderful. The frustration is my mouth.
First the family visits: My sister Sue is visiting from Houston for two weeks.
We have had a lot of fun sharing old memories. She reminded me of things I had forgotten about – a game we made up on our front steps that we called Watercolors. One sibling would be the caller, and each stair had a color associated with it. When a color was called you had to jump to that stair. And when the top step’s color was called you had to get to the top first to be the next caller. And I reminded her about roller skating around our big furnace in the basement that had concrete floors and space around the whole furnace, so you could go around and swing off pipes and really get up speed.
We also had a visit this week from cousin Teddy and his gal Damaris. It was my step brother Brian’s birthday and Teddy’s had been the week before, so we celebrated both.
Sue is the one that did the ancestry.com research to find my dad’s half brother and half sister. For the past 6 years we have been blessed with wonderful additional family to love. Thank you Sue!
It was a great, but too short, visit.
Sue has enjoyed going to aqua fitness with me. And we spent some time at the Truckee River with her.
One of the best things we did was to go through old photo albums. There were lots of favorite pictures. Here are a few:
And Sue said that she was able to tell our Grandma Saunders that she was pregnant right before Grandma died, and Grandma clappped.
And now I will tell you about my frustration. My latest Botox treatment on my saliva glands has left my mouth parched dry and uncomfortable. It is an inexact science of trial and error. I will have to wait for the Botox to wear off in about two months, and try various dry mouth products. I also still have irritated eyes and I was really hoping that discontinuing the Robinul (glycopyrrolate) would solve my irritated eyes too. The good thing about it is I don’t drool.
But these frustrations are minor compared to the anxiety felt by all the people in the path of hurricanes Harvey and Irma, and especially the ALS patients. I heard from one patient friend in Gainesville, Florida and he was worried about power outages for his external vent and cough assist machine. But then he heard from his advocate that he would be moved to a shelter with back up power. I also thought of the ALS patients thoughout the Carribean and Cuba, Florida, Alabama, Texas. To be unable to move yourself with storms like those bearing down would be higher anxiety than even my Xanax could help. I hope you all had help to be safe.
The second line of this song states the obvious: My Bulbar onset ALS has taken away my ability to speak. But the first line is approriate for the last week too, as you will see.
On Friday last week Stan and I drove to San Francisco for my 11:30 A.M. Botox appointment at the UCSF Movement Clinic on Divisadero. Google maps sent us across the San Rafael Bridge and Golden Gate Bridge, so we avoided the ever present traffic jam in Berkeley. On the way down we were listening to KQED public radio about the planned white supremacist rally at Chrissy Field the next day. And then we heard about all the counter protests planned, so there would be lots of places to avoid on Saturday.
This time I had a higher dose of Botox in my parotid glands, top and bottom. Then for the first time, I had injections in my maxillary glands, under my jaw. The injections really sting when they go in. As I write this, it seems I can finally discontinue my Robinul, which takes water out of your saliva and other places in your body too. I have really disliked the effect on my eyes – either too dry or too teary. I hope my eyes go back to normal. I am trying to get used to this new saliva situation – a little maxillary dribble, the rest of my mouth dry, and post nasal drip that collects in the back of my mouth.
We moved on to my 1 P.M. appointment at the ALS clinic on Parnassus. This was another appointment with no real changes. I got some suggestions such as probiotics to control the diarrhea that often comes with tube feeding. I also got a prescription for a liquid mucous reducer because mucous collects in the back of my mouth and then I can’t breathe through my mouth, which is ok as long as my nose is clear. But my nose is not always clear. So far that new med works well with my cough assist machine and suction. I don’t want to carry those around with me but I might have to. We did get nabbed for a research blood draw, where Stan would be my control. We were happy to participate. I don’t know why I am still walking and moving with no limb involvement even after a year. It is a rare form of ALS I am told. I can only attribute it to luck but I will do my best to help find a cure while I am able to be active.
After finishing after 5 pm, as usual, we headed to cousin Julie’s in Outer Sunset near the southwest corner of Golden Gate Park.
Her house is the most beautiful in the neighborhood.
We watched the news about the rally being cancelled. In my opinion it was all a publicity stunt.
On Saturday we had a lazy morning and then stayed in Julie’s neighborhood anyway, with a walk through the park. I had never been through that part of the park before and it was cool. Julie is a horticulturalist, so she could tell us about many of the plants and trees.
We saw bison, which was a surprise for me. Then we saw the fly casting ponds, another surprise.
My allergies were bad walking through the park but I still enjoyed it immensely.
We had an early dinner at the favorite Thang Long Vietnamese Roast Crab restaurant 3 blocks away and had a leisurely walk home.
When we got back to Julie’s she shared some photo albums with photos of Stan’s great grandparents and her grandmother (Stan’s great grandfathers sister), plus photos of Stan’s grandfather and his siblings.
There was also a photo pamphlet of the exhibition for which the Palace of Fine Arts and several other palaces were built. This was interesting to me because we had learned about the exhibition when we visited the Palace of Fine Arts on Segways a few weeks before.
Sunday brought another lazy morning.
Stan picked out all the leftover crab to use in a beautiful breakfast of crab benedict that smelled good.
In the afternoon. we walked in another part of the park I had not seen before. Since I moved to Reno in 1985, I have been to San Francisco hundreds of times, and it’s cool that there are still so many hidden pockets that I can explore for the first time.
After dinner at Julie’s, we moved to a hotel closer to my Monday through Wednesday research appointments.
I participated in a number of studies at the UCSF Memory and Aging Center, all related to the C9ORF72 gene mutation I have that can cause ALS, Frontal Temporal Dementia, or both.
On Monday I was scheduled to have an MRI. When I had my brain MRI pre diagnosis, my claustrophobia caused me to bail out of the MRI as soon as they put the cage on my head. I then had a rescheduled MRI under anesthesia. When we began looking at research and clinical trials, I made a promise to get over my MRI claustrophobia if I participated in any that required MRI.
First I had to sign a lot of consent forms. Shoshana was our study coordinater, and she was wonderful to work with. While I was signing consent forms, Dr. Nick Olney came in with his own consent form. He is researching nuerofilament-light and a cervical spine imaging method called phase sensitive inversion recovery as ALS biomarkers. Dr. Catherine Lomen-Hoerth, the director of the UCSF ALS Clinic, had told him that I was coming for research and with my unusual ALS, limited to the Bulbar region, he was interested in my spine. His dad, Richard K. Olney, MD, was the former director of the UCSF ALS Clinic and a renowned ALS researcher who developed ALS himself and died in 2012. So the younger Dr. Olney is highly motivated by his dad. He was very understanding of my claustrophobia, claiming to have it himself. He suggested I try Atavan, which we could pick up at Walgreens at lunchtime. I had my brain MRI scheduled for 1 P.M. and Dr. Olney had scheduled his for 5 P.M. So, it was a great day to overcome my phobia, with two opportnities.
I had blood drawn after the consent forms and then we went off to Walgreens and lunch.
For the first MRI I requested meditative music. I closed my eyes and didn’t watch the cage being placed over my head or myself being pushed into the tube. When I did open my eyes, I could see the MRI tecnician and Stan in the mirror. I meditated using the body scan method we had learned at the Mindfulness Course we took at St. Mary’s Health and Fitness Center. The technician checked in with me between each scan, asking for a thumbs up if I was ready to go on. I only came out once to wipe out my mouth. I pushed through the rest if it with my omnipresent napkin in my mouth. Stan was asked to do his Caregiver Interview while I was being scanned. He was able to get on the microphone and say goodbye and flash our ASL “I love you”, which I was able to return.
After the MRI, I had the first part of a neurological exam, and then it was time for MRI number 2.
This MRI was a little different because the table was moved between scans and even shaken at one point. They were good about telling me how long each scan would be and made sure I was good to go. They told me I actually fell asleep toward the end. We finished after 6 P.M. and were about the last to leave the building. It shows the dedication of these researchers to help people with ALS even if it means working late. And I was successful at overcoming my claustrophobia, which I consider a victory.
We met our friend Roy at our hotel. Stan used to work with him and he is now working in San Francisco.
On Tuesday, first I completed the neurologic testing with Dr. Dana McDermott. Dr. Olney came in and did his own assessment. Then I had cognitive testing; we had a family history meeting with Joanne, the genetics counselor; more cognitive testing; then a Family Conference, with about about 15 people around a big table. Dr. Adam Boxer led the meeting. Everyone introduced themselves and it was an international group. He explained that I was participating in several studies, specifically
ARTFL (Advancing Research & Treatment for Frontotempemporal Lobar Degeneration) program based at UCSF.
Frontotemporal Dementia: Genes, Images, and Emotion
My C9ORF72 repeat expansion genetic mutation has resulted in ALS. For many of my ancestors, it resulted in FTD. One of the things they are trying to figure out is why the there is a such a difference in gene expression even in the same family. I will not receive any information from this study, although I did find the cognitive testing to be easy. I will come back in a year for follow up.
After the family conference we were free to leave (5 P.M.) When we got back to the hotel, I went to the pool and did my aqua fitness. It was really nice to be exercising.
On Wednesday, we completed the research with a Lumbar Puncture or spinal tap, which sounds worse than it is. You can decide yourself after you see the photos. They put on music for me and this time it was Jackson Browne and the first song was These Days. Of course the second line stuck with me: I don’t do much talking these days, because it’s true. The first line also stuck with me because I am blessed to still be walking. So now you see one of the random ways my mind comes up with themes for this blog.
But now, time for the lumbar puncture. They had me sit with my head on a pillow on a table.
First she numbed my skin, then the layers below, and then stuck the needle in. I felt shooting pain in my left sciatic nerve, and when I reacted she asked if that was what is was. When I nodded she said she would move over a little. I didn’t feel anything else.
After the spinal tap, Dr. McDermott asked if i would do it again and I said yes. It really was not bad at all. This is good because the antisense drug therapy that will go into safety testing soon will be administered directly to my cerebral spinal fluid. After the spinal tap, I got to rest and my awesome sweet husband fed me my breakfast.
Then we had a language test that was made fun by Ariane, a speech pathologist from Australia.
She looked in my mouth with her torch, I mean flashlight. I told her that we had been to New Zealand, so we were used to the language differences, and that Stan’s grandfather was born there. She said to him, “oh you have kiwi blood, that explains a lot”. And my jokester husband teased her about escaping from the penal colony. I said that we called flashlights flashlights when we were in New Zealand. There was a Serbian intern observing and I asked her how to say flashlight in Serbian and she couldn’t remember so she Googled it. Another funny part was when Ariane sounded out words phonetically to see if I could understand that context. She tried to do P O T but with her Aussie accent I had no idea what word she was saying. She asked Stan to read it and I got it easily. She said that sound is really hard for her to say the American way. There were other laughs but to describe them would give away too much of the study.
Then we got information about donating my brain, which we opted to look over later. Then we were done and we had lunch and drove home.
I am passionate about helping to find a cure for this genetic mutation, as well as a cure for all types of ALS, so I am doing all that I can.
On Memorial Day weekend we camped on our friends’ property in Plumas County. After so much snow this winter it was very green with lots of wildflowers.It was a relaxing weekend, with fun activities thrown in.Andy and Stan rode dirt bikes.
Jim and Peggie rode mountain bikes.Jim played music.And so did Steve and Gary.
Alice, our host, with Timmy
Chuck, also host relaxing in camp. Many of us got a lot of reading done too.
Our motor home in the early morning light.
A pond that appeared after the big snow winter was fun for throwing rocks into.Peggie and I took a hike to see the wildflowers and all the green. We saw a couple of snow flowers.
It was very green, greener than most years.
Then we saw Andy riding by,followed by Stan.
Some of the beauty we saw.
We also hung out at Steve and Dianne’s cabin down the road.
Ian watching inquisitive Adi, his son.
Dianne with her grandson, Adi.
Ian playing his dad’s guitar, with dad Steve at his side.
We even got to have a fire, the first in many years. It was finally wet enough that the fire wasn’t going to risk starting a wild fire. My camera obviously focused on the flame.
All in all a weekend with good friends, good food (as I was told), and good relaxing and fun.
In the week that followed I got confirmation that I have the C9orf72 gene mutation that causes ALS – no surprise, considering that my mom had been confirmed to have it too. This now allows me to participate in research specifically for this gene mutation. This is what I feel I can do for my son and my niece and nephews and cousins. The researchers want to first see what the different forms of the mutation do to the outcome of the disease. Some people get ALS, some people get Frontal Temporal Dementia (FTD), and some people get both. There are also people with the mutation that get no disease at all. My family has a long history of dementia also. Getting the genetic confirmation has put into motion my enrollment in two studies, one in Los Angeles and one in San Francisco. It is exciting to be involved in research that could lead to a cure for this particular genetic form of the disease. The gene is dominant, meaning that offspring have 50% chance of inheriting the mutated gene.
On Wednesday, Andy had his Spring Orchestra Concert at school.Andy with his proud parents after the concert.
On Thursday, Andy stayed home from school, after throwing up in the middle of the night and most of the day. It was unfortunate timing – the week before final exams. He did go to school Friday, and Stan and I drove to San Francisco.
On Friday, I had my second botox injections in my parietal saliva glands. I had noticed the effect drop off in the last few weeks. The first dose did let me cut the dose of the saliva reducing medicine in half. This time they did a higher dose and both upper and lower part of the glands. As I write this I am already noticing that I can cut my dose of the medicine even more.
Next came my ALS clinic visit. I first met with the speech therapist. She gave me some exercises to keep my TMJ muscles flexible so I can keep my mouth closed without effort. Then I met with nutrition and they were very happy that I am maintining my weight. I met with the respiratory therapist and she shared the results of my overnight pulse ox test, which were disconcerting. The results show that I am desatting (blood oxygen levels getting dangerously low) several times while sleeping, so much so that I am not getting any REM sleep. I do wake up a lot. No wonder I have had so much fatigue. I use a bipap, and this resulted in an order to increase my bipap pressures. We also found that I have vocal cord involvement impeding my forced vital capacity breathing tests. Air does not flow smoothly when I am making an effort. I met with Physical Therapy and my neurologist, this time Dr. Catherine Lomen-Hoerth, the director of the ALS clinic. There is no sign of progression to my limbs yet. Dr. Lomen-Hoerth hooked me up with the UCSF folks researching the C9orf72 gene mutation.
All in all, it was a good clinic visit. My disease is progressing, and I am uncomfortable at times (needing cough assist or dealing with saliva issues) but I still feel incredibly lucky to be able to self care this long.
We finished at the clinic at about 5 P.M. and we walked to dinner about 5 blocks to a brew pub called Social. We had big plans for the weekend ahead. Our son Andy had driven to the Sacramento area after school to our friends the Peters’ house. Then he rode with them to San Jose, where we met them about 8 pm. Andy was running in the San Jose Giants race at 7:30 Saturday morning. Erika was going to run too, but couldn’t due to injury. Then on Saturday afternoon we were going to Oakland to watch the A’s vs Washington Nationals baseball game, and on Sunday the Young Faces of ALS National Corntoss challenge in Piedmont – Andy and Stan were a team, as were David and Paul.
Saturday morning arrived with Stan throwing up at 5 am. Erika, along with her daughter Maddie and Maddie’s cousin Jacqueline, took Andy to the San Jose Giants stadium for the race. I stayed at the hotel to help Stan. I also had to go to CVS to get some medications he forgot to bring. Erika texted photos (thanks girlfriend!)
Andy, ready to race 5 miles.
After the 5 mile race with his medal and Madison Bumgarner bobblehead. He got second in his age group. Not bad after being sick two days before!
Then Andy went to the A’s game with the Peters and Paul’s dad. I stayed at the hotel and relaxed, with the A’s game on TV on mute, listening to Stan talk like a pirate he was so miserable. (Lots of Argh Matey and You Scurvy Dog, as you can imagine.) I was reading a book about Captain Cook so the language fit right in. He threw up until noon and had diarrhea too. The lucky ones at the baseball game saw an exciting one with lots of home runs.
Stan was not getting better so I texted our friend Peggie, who is a cardiac nurse practitioner. She recommended the emergency room for fluids. I could not convince him to get up. When everyone got back from the baseball game, I asked Paul to come help. He was able to help Stan get dressed and out of bed, and the hotel brought a wheelchair. We left the kids at the pool, and drove to the closest emergency room.The kids also had permission to order room service dinner and watch a movie.
We went to Santa Clara Valley Hospital and there was construction at the ER entrance.Paul had to go in and get a wheelchair for Stan.
The Emergency Room in San Jose was an interesting place to be on a Saturday evening. It was really busy. Stan was triaged and then we waited. They took him for an x ray and then he had an EKG. Then more waiting. He became delerious, with his eyes not focusing and trouble keeping them open. Paul talked to the Physician’s Assistant in charge of ER intake, saying that we were more concerned about him now than we were when we came in. This bumped him up in triage. He was brought to a cubby behind the checkin and they took his vitals. I wrote on my boogie board, “He needs fluids STAT” and showed it to the PA and he responded right away. An IV was started and they gave him anti nausea meds. He was finally moved to an ER room. At 1:30 in the morning they decided to admit him. I texted Erika, and the angel she is, she came and got me.
I can’t thank Paul and Erika enough. Without their help it would have been a nightmare. On Sunday morning Stan was still in the ER. We were in the San Jose Hilton and Apple’s Developers Conference was starting the next day at the convention center connected to the hotel, so there was no way we could extend our stay. Erika took Andy to see Stan, while I stayed back at the hotel and packed everything up. I checked out and gave Andy’s bag to Paul who was hanging out with the kids in their hotel room. Andy would ride back to Sacramento with them, so he could drive home for school the next day. Andy and Erika had returned to the hotel, so Andy rode back to the hospital with me. Erika would pick him up there. By now Stan had been moved to a room. I was glad Andy was with me because it was a maze to find his room.
We had to bow out of the Corntoss Challenge. I want to thank all of our donors, and I am sorry we could not participate.
Kathryn Maple Whitten
Joyce and Vince Zodiaco
Sam and Karen Hancock
Haley Mruz and Drew Sheehy
Steve and Dianne Lintz
Our biggest challengers (the Peters)
The Silvola’s (my second cousin’s family)
Our Connecticut cousins
John and Anita Saunders
Pete and Jenna Saunders
Tim and Joannie Montagne
Alice, Chuck and Rita Hilsabeck
You all helped us raise over $1000 for ALS TDI, the nonprofit company that has a very promising ALS drug in the pipeline – truly awesome friends and family.
When I got in to see Stan, they were talking about releasing him. Erika texted that she was taking the kids to lunch and she would pick up Andy. Then I sat with Stan for the long wait for discharge. And a long wait it was. Andy went to a park after lunch.
We decided that Andy should head back to Sacramento with the Peters, so he could be sure to get home for school the next day. I texted my neighbor Hella, asking if Andy could stay with them (he doesn’t like to stay alone because he sleeps through his alarm). Hella’s reply was “Sure!!” It’s a good thing we made those arrangements because Stan was not released until 7 pm. I was exhausted from not enough sleep and Stan was not feeeling that great so we only drove a half hour and spent the night in Pleasanton. Then we drove home Monday – still a rather difficult drive because Stan still felt ill and I was too sleepy to help. But we made it home safely, arriving just after Andy got home from school.
Andy finished school this week, and after four days of finals, a very busy weekend before, and illness, he pulled off the grades he had set as his goal – all A’s and B’s. We are very proud.
This week we also got a new Polaris side by side so I won’t have to stay home when the boys go out on their dirtbikes.
Busy busy busy and not all as planned but it worked out in the end. Lots of love, connection and hope. And I did remember a dream last night so I am having REM sleep. And best of all, I avoided the stomach virus!
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 LetUs 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.