Folsom Prison Blues

Johnny Cash played at Folsom Prison four times in the late 1960’s and early 1970’s


Folsom Prison by Johnny Cash

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

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

Source  https://www.azlyrics.com/lyrics/johnnycash/folsomprisonblues.html

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.

The old railroad gate with a historic guard house behind
Some prisoners managed to escape from Folsom Prison. For ALS prisoners, those that escape either die or they were misdiagnosed. But we are all hoping and working toward a cure

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.

Andy is second chair viola, right in front of the conductor

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.

Thanks for another great visit Julie!

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.

Surf’s up, our “grandson” is wonderful, Hawaii’s the life for me

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.

Nakey keiki with his mama and auntie

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.

Dreaming about his first surfing lesson the next day. We heard there were high surf warnings for Sunday afternoon and Monday morning. We were lucky to see the cool waves in these conditions.

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).

Daddy with sandy Ollie

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!

Who wouldn’t love this kid?

How I used to talk:

How I talk now:

I wish this was how I talk but it really is mostly vowels that come out 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. 

Andy and I walked down to the closest beach to check it out. 

He really wanted to boogie board but it was high tide with big waves on a rocky steep beach. I explained the physics of undertow and he decided not to try it.

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.

Kīlauea’s steaming crater in the caldera

Then we had lunch at the Volcano House. It was raining then, so we timed it right. Andy tried the Hawaii Sampler plate.

The caldera and steaming crater through the rain from our lunch table. 
Beautiful Koa wood oars
Andy, sitting in a $7000 Koa wood rocking chair in the Volcano House.

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,

Some of the dorms

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.

The 4 boys at dinner on Wednesday.

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.

Stan the fan man, as we called him, in his favorite place in front of the fan (he does not do humidity well)

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.

Ollie loves Roxy’s bed, just like Andy used to love his Grandpa’s dog beds.

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:

We counted really high this week!