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.
Having booked our trip only two weeks before (after a much needed phone call between Jonika and Andy) we flew to Hawaii on Friday March 24, for the second half of Andy’s spring break. Our niece, Jonika, who lived with us from age 11 to 15, now lives in Kona on the Big Island with her man Chris and her beautiful 8 month old son Oliver (our “grandson”). Jonika and Andy are very close despite the 14 years between them.
Just like on the flight to Panama for our Galapagos trip, I threw up after “eating”my normal two can dinner through my g tube on the flight from Los Angeles to Kona. This time I made it to the bathroom. I think it’s caused by inactivity and maybe the anti diarrhea pills I take prophactily when I fly. I guess I have finally learned I will have to pace my eating differently when flying.
The time change to Hawaii this time of year is 3 hours. We arrived at 7:30 pm and picked up our rental car, then Jonika and Ollie met us at the condo. By the time I tried to sleep I had been up about 21 hours. But when I laid down, I felt like I was going to choke on my tongue. I got up and put some of my saliva reducing medication in my grinder and took that in through my tube. I Googled to see if this was a symptom of bulbar ALS and found that it can be a symptom of Gastrointestinal Reflux. Since my throat muscles don’t work well, some of my acidic vomit stays in my esophagus after vomiting, burning the whole time. So I apparently had a swollen esophagus. That helped me get to sleep but I was low energy the next day.
Life in Hawaii is fairly low energy so all was good. We went to Jonika’s house and hung out with cute little Ollie.
Lunch was huli chicken salad. Chris was able to come home from work for lunch. Then we went to a grassy beach park that we love.
Andy had fun swimming with goggles looking at colorful fish and climbing into lava tide pools to soak. We tried to go to Costco (rather a long drive from where we were staying) to stock up, but they had already closed. By the time we were back and ready for dinner, Jonika had already put Ollie to bed. So just Stan, Andy, and I went went to the pizza place in the shopping center nearby.
Andy kept up with his training plan for his April 15 10K and enjoyed his runs along Ali’i Drive. I was envious.
On Sunday Jonika and Ollie came over (Chris was working again) and we swam in the pool across the parking lot. Jonika and Stan had made some poke (fresh ahi tuna with lime, soy sauce, sesame oil, and avocado) which I understand was wonderful. We had lunch at the pool.
After the pool Andy took me to see the Ocean Pool and the awesome waves on the cliffs.
Then we finally did our Costco run. On Sunday night we celebrated Jonika’s birthday which was earlier in March. We went to a lovely Italian restaurant on the water called Mi’s. I was not feeling well because of saliva in my throat causing a gag reflex. I did manage to ingest my 2 can dinner. I went to the railing and looked at the ocean for awhile (memories of the night of New Years Day in the Galapagos, not feeling well, watching the ocean). My anti saliva medication finally kicked in by dessert. I slept better that night.
Monday morning Andy had his first surfing lesson. It was delayed two hours so the instructor could catch the big waves. Jonika had gone to work but Chris was off and we had time to go swim in the ocean pool and watch the big waves. Chris had his GoPro and got a video of Stan scaring Ollie in the pool that reminded Jonika and me of Stan scaring us on a kayak trip to the Cook Monument on our Big Island fall break trip when Jonika was 11.
In the surf lesson Andy picked it up right away (all that skateboarding paid off).
He was standing up during most of the lesson. Chris, Ollie’s dad, had a surfing lesson too. Stan and I babysat on the beach and let Ollie get all sandy, much to Jonika’s chagrin (she hates sand).
We ate dinner at Rebel Kitchen and while Andy was using my phone to video Ollie, he happened to catch Jonika’s rant about the sand perfectly: “So this man,” (pointing at Chris), “hands me my beautiful baby boy and I notice there is sand in his nose, and in his ears! So I say ok we’re going to take a bath. Then I notice it’s even in his belly button!” We love you Jonika!
I got to hold Ollie after I was done “eating”.
Andy loved surfing so much and he loves Ollie so much. So first thing Tuesday morning I booked a visit to University of Hawaii, Hilo for Wednesday afternoon, since we had planned to visit the Hawaii Volcano National Park on Wednesday and we would be close to Hilo. I would love to have Andy go there because he would have loving family two hours away.
On Tuesday we had a lazy morning and then we got to hang with Ollie and Chris for lunch at our condo. Then Chris left for work and we played with Ollie. Then Jonika came over after work but left for a meeting so we babysat again. No complaints. We love him!
How I used to talk:
How I talk now:
Ollie loves me because we speak the same language. He says, A, and I say, A. And I can match everything he says perfectly, which he finds fascinating.
This video doesn’t exist
Andy and I walked down to the closest beach to check it out.
Tuesday dinner was steak and veggie stir fry made by Stan and Jonika at our condo. Chris joined us after work.
On Wednesday we got up and out by 7:15 to drive up to Hawaii Volcanos National Park. First we visited steam vents.
Then we had lunch at the Volcano House. It was raining then, so we timed it right. Andy tried the Hawaii Sampler plate.
After lunch we went through Thurston’s Lava tube.
Then we visited Hilo and the University of Hawaii, Hilo.
We had a lovely tour from a senior soccer player, who truly loves her school.
And there was a lot to love – 15 students per class, all professor taught classes, mostly hands on learning (example: Statistics is taught on a boat out at sea.) The small school is like a family. There were beautiful trees,
and the only Olympic sized pool on the island.
They even have massage week the week before finals! Andy was partially sold when we left.
On Thursday we went on a snorkel trip on the Body Glove boat. Jonika and Chris met while working at Body Glove.
They announced a scuba diving opportunity and Andy was eager to try.
He loved it and scuba diving further cemented the possibility of college in Hilo. Stan, Jonika, and I snorkeled and I was happy because I did not swallow any sea water (two of my tries in the Galapagos resulted in big gulps which scared me). The nose purge mask and splash preventer on the snorkel helped. We saw lots colorful fish and a coral arch. Andy saw eels and starfish on his dive. Andy also said he wants to work on the Body Glove boat so I made sure that he saw how hard they worked.
Andy and Jonika enjoyed the slide and Jonika jumped off the top deck after waiting in line with all the little kids (she had never done that in the four years she worked on the boat). Andy had borrowed a rash guard from Chris and it was the uniform of the crew so they kept teasing him by trying to put him to work.
Thursday afternoon Jonika’s friend Hope came over. Stan and Andy and Hope and Jonika went to the ocean pool and I happily volunteered to babysit.
Thursday dinner was grilled steak and potatoes and asperaragus at our condo with taro for Ollie.
On Friday morning we had to pack up and be out of our condo by 11 a.m., although our flight was not until 10:30 p.m. We hung out at Jonika’s again.
We had lunch with Chris at Annie’s, one of my favorite places because of their breezy lanai, and then had to say goodbye to him when he went to work. Back at Jonika’s, Andy went for a run around the coffee farm and up the steep road that Jonika lives on. Then he wanted more beach time and Stan and Jonika were game and I again happily agreed to babysit.
It was a wonderful week of love, connection, and hope. It ended too soon, but this wall hanging in Jonika’s house says it all: