One of the benefits of quarterly trips to San Francisco for my ALS Clinic visits and Botox shots, is discovering new areas of such an interesting city. There are historic or interesting things around every corner.
But first, we had to get up early to get my 10:30 Botox appointment at UCSF Mt Zion on Divisadero. The fastest way is always Highway 37 at that hour of the day. I love seeing all the birds along that road.
Here is your quarterly picture of my painful Botox shot.
Then we had lunch at our favorite deli in the Botox building. Then off to UCSF Parnassus for my ALS clinic visit. For once, they did not take my vitals again but used the ones from the morning appointment.
My friend Barb, who is a research pharmacist in Canada, had emailed me some ideas. After reading my last blog she had several ideas as to what could be happening. One was slow gastric emptying, which could be helped by a drug available in Canada. I had taken that before for breast milk when I was pumping because my little preemie could not breast feed. The other idea was that the Omeprazole could be reducing acid so much that stomach muscles take over and push food both both up and down. So I stopped taking Omeprazole, despite her warnings that quitting suddenly could lead to massive amounts of acid. (That didn’t get me until Saturday).
They were amazingly receptive to her ideas, although the emphasis was on slow gastric emptying with no consideration given to Omeprazole. (She is a research pharmacist and one who works with lots of meds). So we worked out a plan where I would try bag feeds dripped at a slower rate (2 hours vs half hour), then try domperidone, the medicine with the champagne name that we have to get from Canada. And for some reason I need an EKG before the domperidone (not in 2000) and I should have had one before Neudexta in 2016. And then the 3rd step will be a change in formula. I am also switching to the lower dose acid reducer and I will ask my GP about tapering off Zoloft which seems to be making me very dry.
Stan said he thought I was walking slower but I, in denial, blamed it on the Xanax which can increase risk of falls. But I do have to admit I am more clumsy and move slower especially when tired. And it is harder to turn in bed. And I do get cramps in hands and legs. Of course, we will get to the bottom of the reflux and headaches right when I start failing faster in other ways.
But back to interesting San Francisco. We stayed at the Hilton Financial District for the first time. It is on the edge of China Town and right across from Portsmouth Square which was hopping on Saturday morning with live music. There is a playground and lots of Chinese Chess players.
From our room, which faced north, we saw an interesting building with a blue dome on top.
A couple of weeks ago I was up in the middle of the night because I couldn’t sleep. Then Stan came out for a drink. I realized that I was swallowing thin drainage without problem. As Stan was heading back to bed I said, typing, “I am swallowing thin stuff now no problem. Getting all mucus filled with the bipap every night starts a viscous cycle.” What an appropriate typo! Of course I meant vicious but it truly is viscous too! It is strange to have typos when speaking, but there have been some humorous ones. When I type fast I tell people to pick the one misspelled word!
With multiple trips to doctors as well as a helpful Facebook ALS caregiver (wife), I may be closer to a cure from mucus. Finally! I hope.
Just five days after our Bay Area trip to San Francisco with Jonika and Ollie, I had to go back for ALS clinic. Stan’s sister, Terry, Jonika’s mom, offered to join us to help with driving. We left at 5 AM and since we beat all rush hours we arrived with an hour to spare. We decided to hang out by the Bay with a view of the Golden Gate Bridge.
Then I had my painful botox treatment for salivary glands. We kept doses the same while I am trying to get to the bottom of the mucus problem because I don’t want to change too many variables at once.
I had ALS clinic that afternoon. I was able to report a weight gain (a really big yay for ALS patients!). I was able to suction the mucus out of my vocal chords while the respiratory therapist was with me and was finally able to do forced vital capacity without vocal chord involvement (another really big yay for me).
We stayed with cousin Julie again and Terry got to get reacquainted with her after as many years as it had been for Jonika and Andy. She cooked a lovely meal for Stan and Terry and had homemade scones for them at breakfast.
We had fun driving back home on Saturday on Interstate 80 with President’s Day weekend skiers, many of whom seemed to have Chinese New Year hangovers.
Then on Monday night we drove to Vacaville to be closer to San Francisco for an early Tuesday appointment with a UCSF ENT. Again, we were in President’s Day weekend traffic. It was snowing and traffic was moving slowly just past Truckee. Google maps said we could save an hour and a half if we went on Donner Pass Road past Donner Lake. So we took that bypass and avoided the freeway Donner Pass with accidents, slow trucks and heavy traffic. We stayed on that road (HWY 40) almost all the way to Cisco Grove. When we hopped back on I-80 traffic was moving better. It was good we left the night before because we were late for the appointment anyway due to traffic.
The UCSF ENT was kind and helpful but found nothing in my nose or ears or sinuses that could be causing my problem. He did point out that Mucinex is a vasodilator, which could be causing my severe rebound headaches when I am late on a dose.
We returned to Reno Tuesday night. On Wednesday, I was feeling dejected but at least had pretty trees, with a storm coming in, to look at while using my cough assist and suction, which seems to be my life.
Then we got a call from my gastroenterologist that they had a cancellation the next day. And my friend Steph Courdin from the Ambassador program posted on Facebook about a tight turtleneck feeling and when I replied and detailed my situation, I got a reply from a woman named Mary from Florida whose husband had had the same symptoms. I asked her to private message me about what worked for her husband. It turned out that what helped most was a drug that I discontinued in August. I still had some and started taking it right away. It should kick in in about a week.
My gastroenterologist wanted to do a endoscopy, to look at my stomach and esophagus. And for once we got it scheduled quickly, for the following Monday.
The next day, I was feeling more hopeful and my view was brighter too.
My endoscopy showed that my esophagus has been damaged by stomach acid. Two weeks ago my neurologist increased my omneprazole dose to twice a day. That is a good dose for me and my esophagus should heal quickly. Now hoping that the reintroduction of the drug I stopped in August and/or the Omeprozole will ameliorate my mucus problem.
What is it about the month of January that is depressing? So many of my friends with ALS wrote about depression last month. There was even a widely shared post about the choice of death or divorce – a man in the United States who decided to get a tracheotomy rather than dying and his wife divorced him after that because of the burden of care.
I have had my own pity party because of the post nasal drip and drooling and mucous that are still plaguing me. My neurologist at UCSF said it is not an ALS problem. She has not seen it before. I went to an ENT in Reno and a CT scan of my sinuses was clear. But now I have an expitided referral to the UCSF ENT department (we will see how they define expedited). The next step after, if needed, will be my Gastroenterologist and the earliest appointment I could get is April 4.
Let me tell you what this has evolved to – I get bad sinus headaches to the point of bad eye pressure and sometimes even ear aches. I have found that using Mucinex every 4 hours followed by cough assist and suction sometime in between can usually keep things moving. I also try to stay upright – standing or sitting to facilitate gravity assisted movement through esophagus. It takes a lot of time to manage and makes it hard to have plans away from home. But if this is my very own ALS journey (and it obviously is) I will have to readjust my expectations and figure out how to be happy with this.
It reminds me of my ALS diagnosis saga – every new antibiotic or doctors appointment brings hope that things will be better. And every failure is depressing like the lack of finding problems was during the “Please anything but ALS” phase.
But I have read beautiful memoirs by people with cancer (When Breath Becomes Air by Paul Kalanithi and The Bright Hour: A Memoir of Living and Dying by Nina Riggs). Both described their lives with cancer and it sounds in many ways worse than ALS. Although neither book dwelled on the difficult or painful parts, they were mentioned. I guess the only easy way to die is suddenly. One happy outcome from those two books is that Paul’s wife and Nina’s husband are now in love.
So I am challenging myself to find a happy outcome. I can plan on getting help soon at UCSF and at my Gastroenterologist in April. And I can fake it until I make it or until it is over. I am lucky that I am not aspirating this thin drainage. I am lucky it is not affecting my breathing, although I often can’t make through the night with my bipap because of too much mucous in my mouth. And I am lucky to be able to still use my hands and arms and legs.
Because I can still use my hands and arms, Stan and I decided to take a Community Education American Sign Language (ASL) class. It is frustrating for Stan when I do charades not very well so our communication has been difficult. Plus if we use my phone to navigate, my voice is the same as the GPS lady who says, “Take the second left”. We had the first class and it was fun with a great teacher. It was overwhelming at the beginning but with practice it became easier. Finger spelling has already helped us. Once when Stan was leaving and I had some mail to go out, he asked where it needed to dropped and I finger spelled our mailbox. That saved me from having to run to get phone or Boogie Board or paper and pen to write. Fingerspelling has also been helpful riding in the car. We were also told that practicing fingerspelling while driving or riding in a car with license plates and signs would be a great way to start. We have a lot of online homework, but it is fun. I love that it is a whole body language and I have always loved learning languages.
Other things keeping us busy are Jonika and Ollie visiting until 2/14. They are a joy to have with us.
Jonika and I took Ollie to the playground at Idlewild. One of the play structures had the American Sign Language alphabet!
It was so nice to see Lyndi again after so many years.
We also had a nice visit with Stan’s mother, Sharon, and Jonika’s mother, Terry. We enjoyed a meal at Naan and Kabob and relaxing visits at our house.
And more Ollie cuteness:
Last Friday we left as soon as Andy got home from school, and drove to Sacramento’s Golden 1 Center for the Kings versus Warriors NBA game. We met my best friend Erika and her kids there. It was very loud so Ollie had ear protection.
Jonika and Ollie were ready to leave after the third quarter so Erika and I left with them and went back to Erika’s house in Eldorado Hills. It meant we missed the fourth quarter where Kevin Durant took over and brought the Warriors to victory. But it gave us more time to visit with Erika and Stan stayed and had fun with the older kids.
The next morning we had a nice breakfast and more fun with Ollie.
Then we drove to El Cerrito to pick up Andy’s viola bow which was being rehaired. We stayed in Oakland on the estuary. Saturday night we drove across the Bay Bridge and across San Francisco to cousin Julie’s. Julie had not seen Andy since he was Ollie’s age and she hadn’t seen Jonika since she was a teenage highland dancer. Julie’s grandmother was Stan’s great grandfather’s little sister and they were from Scotland. We had a wonderful visit.
On Sunday morning we met Jonika’s friend Rob for brunch in Oakland. Rob is Jonika’s mother’s best friend’s son so they have been friends since childhood.
Then we drove home, listening to the first quarter of the Super Bowl on the way.
And so began February, with good distractions from my illness, and hopes that things will soon get better with my sinus problem.
On Sunday night Jonika and Ollie went to a birthday party.
Stan and Andy and I went to the restaurant at the Kona Country Club. We had a great view of Keauhou Bay and the dive boats with their lights for manta ray diving.
On Monday, our last full day in Hawai’i, we were treated to a whale watching tour on the Body Glove Boat, which is where Jonika and Chris met when they both worked in the boat.
We got very close to the whales, and one even bumped the boat! I saw a baby one swimming next to mom. They winter in Hawai’i for mating and giving birth, then make a beeline for Alaska for the summer. We had a naturalist telling us all about them.
there were Spinner Dolphins swimming around too.
The naturalist told us all about the whales’ mating rituals, and we realized we had the results of the Body Glove Boat mating ritual with us. And we love them.
That night we went out for our farewell dinner at Lava Java, a nice ocean front venue with the sound of crashing waves.
Then Tuesday we packed up and Chris and Jonika and Ollie came over to help us clean up the condo and get packed up. With a very short connection in L.A., we knew we had to pack for an extra day, including my food. We put all our meds and toothbrushes in my carryon bag.
When we got to the airport we didn’t have much time to spare. They were lining up the pre boarders. But they soon announced a delay. And then more delay. And we were in the open air airport in the voggy wind. They kept announcing, “no updates, please continue to wait”. We finally made our way to the enclosed restaurant. And then we saw that something had been announced. Stan went to find out. I saw the flight crew leaving as Stan came back and said the flight was canceled. American would put us up at the Hilton Waikiloa with meal vouchers and taxi vouchers. We and all the other passengers had to stand in line for our vouchers and to rebook. We were talking to the people around us and we made a new friend, Anssi from Finland. He had been there for an IT convention. The agent found us a flight the next day on Alaska Airlines which would get us home that night. Our original flight was rescheduled for 4 pm the following day which would get us to Los Angeles after the last flight to Reno.
We rode in a great taxi for the 1/2 hour ride up to Waikiloa. The driver was the owner of a fleet and he said he or another driver would pick us up at 10:30 the next morning.
Our room was on the ground floor right in front of the dolphin pool. Andy called Chris and he said “Sweet!” and said he and Ollie would come early to swim.
We had dinner in a sports bar and Anssi walked by so we invited him to sit with us. We learned a lot about him and Helsinki. He is a sailor and a skier like us. He had been to Reno for gambling and skiing at Squaw Valley. He learned a lot about us too! We will keep in touch.
The next morning Chris and Ollie showed up bright and early. We went to brunch on American Airlines dime.
Then Andy and Chris and Ollie went swimming and Stan and I packed up. On the way out of the hotel there was a man with a parrot.
Our taxi was waiting at 10:30 AM.
And then we flew off the island.
Then we finally arrived home and had a few days of sleeping late on Hawai’i time. We also had to do major baby proofing because Jonika and Ollie will be here on January 16, coming to stay with us for a month. Jonika was shaken by Stan’s septic shock as we all were, and we were all reminded that life is short.
Jonika’s best friend, Lyndi, has a son the same age. Jonika said Ollie and Landon meeting will be a dream come true.
I was hoping that my sinuses would clear up by getting out of the vog. But they are still draining. I hope to see an Ear, Nose, and Throat doctor soon.
I also started my fourth round of Radicava and my motion sensors for the precision medicine program arrived. I do have to spend a lot of time managing my illness, leaving little time for pleasure things, like knitting or playing piano and I wonder when I will be able to go back to aqua fitness. I decided to pick up my knitting and the meditative aspect of helps me ignore my sinus problems. I posted a long time ago that ALS is a disease of ch-ch-ch-ch-changes. And life is full of the same.
On the Big Island of Hawai’i we enjoyed our grandson immensely.
And it was so nice to spend time with Chris and Jonika too.
I had a little snafu on New Year’s Eve – my suction machine broke. And it being Sunday and New Year’s Eve, no medical supply companies could be reached and wouldn’t be reachable until Tuesday. It is lucky I married a MacGyver like guy – he tried to fix the suction machine but he could not – “I could fix this if I was at home.” So in true MacGyver fashion he hooked it up to the vacuum cleaner so I could use it. It gave me an appreciation for the ALS patients in Puerto Rico and other islands after the devastating hurricanes. They were left in a worse state than I was – not a broken motor with a McGuyver guy around but no power for days. It is truly scary to be without suction when you need it badly.After a nice dinner at our condo with Jonika, Chris and Ollie; Andy decided to break the rules and swim after sunset on the last night of 2017.
Then he stayed up to watch the fireworks from the condo deck. But he is the only one. Stan and I hit the sack before even midnight in Chicago. But I was up at 3 AM coughing and I saw the moonlight on the deck.
I did not feel I could turn on the vacuum at that hour of the night, because most condos had windows and sliders open. So I took some benadryl and went back to sleep. But I used the vacuum cleaner suction quite a bit on New Year’s Day.
Stan and I took it easy on New Year’s Day. But in the afternoon Andy walked to the pretty, rocky beach down the street. He called to report that the waves were big. So he came back and in the waning light of the first day of the new year we drove to Magic Sands Beach. Andy and I ventured into the water.
I watched him bodysurf a couple waves and then I dove to ride one myself. But I forgot to close my mouth and got a mouthful of salty sea water. I came up coughing – not having a working epiglottis I can’t protect my airway. Plus I haven’t had salt in over a year, so it was very salty in my mouth. A woman asked if I was ok and Andy came over to help me.
I bent down to write in the wet sand to tell Andy what happened.
We walked back to where Stan was sitting on a rock.
After sitting a few moments, Andy and I went to rinse off in the outdoor shower. When we got back, I sat for a few minutes and realized that I had just done a natural netti pot – my sinuses were draining mightily. So we had to go back to the condo so I cough assist and use the jerry rigged suction. Then I slept for an hour but had to get up at 8 pm to eat dinner. I woke up coughing at 2 am and not being confident of sleeping with such irritated lungs or willing to turn on the vaccuum cleaner with all the windows open in the neighboring condos, I stayed up and finished my book. But at least I went in the ocean and it was exciting before scary.
It wasn’t until Tuesday after the holiday that we could work on a replacement for the suction machine. Our home Durable Medical Equipment (DME) company Bennett arranged for a machine from a Big Island DME. It was delivered Wednesday. It is not portable.
It is heavy and has no case. And we are supposed to carry it back with us so Bennett can ship it back to Hawaii. So Stan called the company but all he got was a run around and voicemails. I texted our rep from Bennett and she had the local DME call Stan. He got a call back Thursday morning saying the DME didn’t have a portable suction machine. But they said they will look for one.
We went to the Hulihe’e Palace with Jonika, which we had not seen before.
This historic home was built in 1838. It belonged to the governor of the island of Hawai’i. When his son married into Hawaiian royalty it became a favorite retreat of royal families. It houses a collection of ancient Hawaiian artifacts and personal memorabilia of 19th century Hawaiian royalty, including beautiful koa wood furniture and bowls. There was also ancient jewelry and weapons. There was a very entertaining guide upstairs.
After the palace tour we had a nice lunch in a new restaurant that Jonika had wanted to try.
Still dealing with mucous, I tried a medrol dose pack and a stronger antibiotic. I also had to refill my Xanax which I take for ALS anxiety which is a very real thing, especially after watching my mom go through it. I had a refill from my Reno doctor but in Hawai’i for controlled substances, only prescriptions written by Hawai’i doctors can be filled. So we went to urgent care Tuesday night and got the prescription – and will have to send the bill into our insurance company. And then we went to dinner.
Another night we had a nice dinner at Jonika’s house with friends of theirs from Portland, Oregon. Jonika and Mike have been friends since riding the bus to middle school and high school from our house – he lived around the corner from us. Jonika made a pumpkin soup in a pumpkin that I heard nothing but raves about.
While Stan and Jonika were grocery shopping for the dinner party, Stan got a call from the DME that they had a portable suction machine, so they went and picked it up. It is the best suction machine I have had yet.
We babysat for Ollie quite a bit. He is a sweet helpful child until he is tired and I think he is growing this week – he is sleeping a lot and we see him learning new things.
Jonika’s work on phones for Seaquest, the boat company she works for, is wonderfully flexible. She can be at home or wherever and just has to answer phones and book trips on her iPad. She can get things done between phone calls. She can do this work in Reno too when she visits later this month. She also works in the office and does sales presentations for the company.
Despite his lethargic parents, Andy had fun.
Chris took him cliff diving (video by Chris):
And Jonika took him zip lining.
Andy and I took Ollie to the pool.
It was a week of love, connection, and hope – hope that my sinus mucous would clear up. I could be reacting to the vog which is gases from the volcano. Vog and dogs and cats and pollen – my body reacts to the world I live in and I may be managing mucous the rest of my life. Allergies and sinus infections used to be minor inconveniences but now I can’t blow my nose or cough or swallow well but I am still hopeful the problem will clear up, and in the meantime I will pick my nose and hack into cough assist and suck out mucous with suction and be thankful for electricity.
We spent Christmas with Stan’s dad and step mom, Cathy. Stan left for Las Vegas five days before Andy and me. He drove down towing our RZR side by side in order to spend a few days taking his dad off road. His dad has loved hiking and getting out in the wild his whole life, but due to his health he has not been able to go out.
They had a great time for three days exploring the hills near Vegas.
Andy and I flew down Friday night after Andy finished finals. We had a nice visit. There are four dogs in that house and I was bothered by an allergy to the dog hair. I know I talk a lot about allergies in this blog, but with Bulbar ALS at the extent I have it, it is a big problem. I can’t swallow or cough or blow my nose. The week before Christmas I realized my symptoms were indicative of a sinus infection. My awesome nurse practitioner called in a Zpac for me, and then a second one. And it was still with me. So she called in Cipro for me. I started to feel better, but the intense dog allergy made it hard to know if the antibiotics were working.
Stan had a bout of food poisoning while we were in Vegas and was sick for a day. But for once he got sick and didn’t end up in the hospital.
Andy helped Grandpa by picking all the ripe lemons off the tree in the back yard. They were posing for a photo, both holding handles on the bag when it broke.
On December 23, Stan’s step mom Cathy’s friend, Sandy, came over and we had a nice visit.
Andy even played his viola for all of us.
Christmas was a nice gathering of my inlaws’ friends. The guests all were impressed with my text to speech app on my phone with my wireless keyboard and my Boogie Board too. We shared stories and laughed.
Stan gave me some gifts that will help me deal with my ALS. One is a charging cellphone case. I use my phone to speak so by mid afternoon my battery is already running low. I have tried external batteries but they are cumbersome and the charger connections don’t last long. Now I can charge overnight and both phone and case charge and in the morning the phone is charged and when the charge goes down the phone case takes over charging it. So my charge now lasts all day. It is wonderful. Another thing is a pill grinding syringe.
It has a grinding surface at the bottom of the syringe, so you can grind a pill or pills right in the syringe with the plunger. It works best to suck in some water and suspend the ground medication in an aqueous solution. Then it can go right into my stomach through my Mic-key Tube.
The day after Christmas we drove to Kingston, Nevada to visit our good friends, Ann and John, at Miles End Bed and Breakfast. This was the end of their Christmas brèak. They had just returned from Carson City that afternoon. We were the only guests and they brought pizza from Carson for dinner. That was fine because we were there as friends, not B&B guests.
But in the morning, Stan and Andy enjoyed John’s normal wonderful breakfast. Ann had to run off to work at the clinic, which she runs. So we packed up, said goodbye to John, and stopped by the clinic to say goodbye too Ann.
Andy drove us home and we got home mid afternoon. We had to unpack, do laundry, and pack for another trip – this one to Hawai’i. But we were able to have dinner with my sister Cathy and Rick and 10-year-old Sam, visiting from Portland, Oregon. It was too bad that was all the time we had to visit. It was also too bad I was so tired I didn’t even take photos. But here is one they texted from San Francisco a few days later.
Then we flew to Hawai’i. I was worried about needing cough assist and suction on the long flight. But I went and talked to the flight attendants in the back and asked where I could do it. They asked if I could use the bathroom. I said no, too small. Then they offered me the back row of the plane (their seats) while they did beverage service. That worked out great because it was so loud back there that no one noticed me coughing with the cough assist or suctioning and both are loud.
Our niece who we raised lives on the Big Island and her son Oliver is 18 months old. We are his ‘grandparents’ and so proud of this handsome, smart boy (spoken like every grandmother😎).
Andy and Jonika have a bond closer than cousins. And Andy has a special bond with Ollie too.
We had a crazy surreal and funny dinner at a restaurant that will not be named. The waitress had real difficulty with our order, bringing the wrong things and totally forgetting one meal. But it was very fun and I was told the food that did come was great.
Chris ended up getting his food to go. That led to jokes that may continue the whole trip – like ‘we could go back to that restaurant – but we might want to eat before we go!’
I had lots of love, connection, and hope in 2017 and I am looking forward to lots of the same in 2018 too. I hope you find the same.
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.
Last Thursday, November 23, was Thanksgiving in the U.S. It is a traditional four day weekend but our local school district added the day before a few years ago, so now it’s a five day weekend.
We drove to my sister Beth’s in California on Wednesday. She lives south of San Jose, in San Martin. My dad and stepmother, Anita, also drove from Reno. Beth and her husband Jamie have a beautiful home overlooking the CordeValle golf course and a vineyard. Jamie’s sons Phillip and Jack were there too. Because of not quite enough beds, Stan and I stayed at the golf club.
We had a lovely Thanksgiving dinner at the club.
We went around the table and each said one thing we are thankful for. Among the comments: indoor plumbing, antibiotics, the first amendment, and the family we were sharing dinner with. Although it is hard to prioritize what I am thankful for, I said I am thankful to still be able self care after nearly two years with ALS. That is not just selfish because it impacts my son and husband greatly. I also seconded the comments about being thankful for everyone at that table. In addition, I am thankful for all of our relatives who we were not with on Thanksgiving.
I am thankful for my friends. Erika and her daughter Maddie came up from Eldorado Hills and spent Friday night and part of Saturday with us. Andy had to sell Christmas trees at his Boy Scout lot at Shoppers Square. Erika bought a tree and I bought a wreath. We will be with Stan’s dad and stepmother for Christmas so we don’t need a tree.
Erika even hung the wreath for me.
There are so many friends I am thankful for: the ones from my elementary school, the ones from high school, the ones from college and grad school, and all the friends I have met since I moved to Reno, and also the ones I met online that have become flesh and blood friends.
I am thankful for Radicava and the hope it brings for slower progression of my disease. I am thankful for all the researchers around the world who are working for an end to ALS. I am thankful for all the people who work in ALS clinics to help ALS patients have better quality of life. I am thankful for all the wonderful people with ALS and the wonderful caregivers I have met through ALS fundraisers, Facebook, and our local support group. I am thankful for the people who facilitate our support group.
I am thankful to be a patient fellow for the ALS/MND International Symposium in Boston December 8th through December 10th. Iagain encourage anyone with questions or comments about anything related to ALS/MND that you want the researchers to hear, please send me your questions and comments. I will be your voice at the conference. Again, you can comment on this blog or on Facebook or on Twitter.
I am also thankful for a fun Twitter interaction. The father of neurology is Jean-Martin Charcot, a brilliant doctor in the late 1800’s in France who first identified and classified ALS, MS and other neurological diseases. Well, Jean-Martin Charcot is on Twitter and he shared my blog! I could not agree more!
On October 21 we went to Clairmont Country Club in Piedmont, California for the annual Corey’s Crusade fundraiser for ALS TDI. Corey was diagnosed in college. This was his 10th annual party (He is now 31). Every year the party has had a different theme. For this party we could choose a theme for a costume from any of the previous 9 themes.
Stan was a Parrot Head for the Margaritaville theme and Andy chose Purple Rain. I was a superhero of sorts, the Beauty who Killed the Beast.
It was a great party where we saw friends and met many nice people. And I am sure they raised a lot of money. We stayed in Walnut Creek because we had to be back in Reno for the 1 pm show Beautiful – Carole King the Musical. I did my Radicava infusion and ate my feeding tube breakfast while Stan and Andy went down to the hotel breakfast. Then we packed up quick and hit the road. We made it by 12:55 pm. This was an 85th birthday present for my dad. It was nice to share such a wonderful show with my dad and Anita and Stan and Andy. Even Andy liked the show.
I have now completed over a week of Radicava. The first few nights I felt that I was sleeping better. I have been remembering dreams again. But by the 4th and 5th day I was having runny nose and lots of thin post nasal drip. There was so much I thought it must be an allergic reaction. We notified Searchlight of a possible reaction. But the next day Stan talked to two different pharmacists from Option Care. They said that it is possible to have an initial reaction to port medicine and it would go away with time. They also said see how I feel on the off weeks. So I loaded up on Benadryl and Sudafed, and I am still hoping for a freeze. I am watching those low overnight forecasts. Come on cold weather!
I can’t swim until a month after my port surgery, which will be November 11. I can’t wait to get back in the pool. I feel better when I am doing all those range of motion exercises. I will have to start doing them at home for the next two weeks. For the next round of Radicava we have a little more flexibility. It will be ten of 14 days so we can do 5 days on then take the needle out and I can have two days to swim and shower without plastic wrap, and then do the second 5 days. We looked at the November calendar and maximized the days I could swim. I also will explore ways to cover the needle so I can do aqua fitness and stay in shallow water.
My friend Erika came up from Eldorado Hills, California for a quick visit. She learned how to do my infusion. I am able to do the infusion myself now but someday I may need help.
I am so blessed to have wonderful friends and Erika is the best of the best!
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.