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


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.

Thanksgiving in the U.S. – what I am thankful for

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.

The view from our room.

We had a lovely Thanksgiving dinner at the club.

The beautiful menu – the food was equally beautiful. Jamie’s last name should have a capital B. That is the opposite problem from ours – the small d Macdonalds.

My dad, Phillip, Jamie, Jack, Beth, me, Stan, Andy, and Anita

Although I could not eat the turkey or any of the other wonderful food, I got into the turkey day spirit by drawing a turkey on my feeding tube. Thank you Laura Furumoto for the idea!

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.

Marvelous Maddie with our wreath
Erika and Maddie with the tree on top of their car to drive over Donner Summit, with Andy and Cooper, who sold her the 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. I again 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!

Bobcat, Beach, Birthday, and Gram’s Grave

I succeeded in giving my 17 year old son “the weirdest birthday present I’ve ever received”:

Happy Birthday! Glimpses of nature are my favorite gift. Your bobcat on Sunday was one, and this was on the driveway with the newspaper (this morning)! Note, our driveway does not get a lot of pinecones.

Andy’s birthday was Tuesday and since he runs Cross Country and plays viola and has a full class load as a high school junior, we started celebrating early. We made Sunday, two days before his birthday, a special day for him. He wanted to go to Lake Tahoe and it was a beautiful day, so as soon as homework and viola practice were done we drove to Emerald Bay. We were thinking that post Labor Day it wouldn’t be crowded, but with such beautiful weather we were lucky to get parking. Stan’s painful feet finally qualified him for handicap license plates and he just got them a few days before. We waited to get into the parking lot and when we got in, there was one open handicap spot. We had a picnic lunch overlooking lower Eagle Falls. Then Andy and his Aunt Sue hiked down and ran the Rubicon Trail along the shore of Lake Tahoe. Stan and I drove to D.L. Bliss State Park and we got the only available parking place at the beach at the trail’s end – a handicap spot.

It was a beautiful day on the beach and Stan and I got to relax.Then the runners joined us. First Andy, who reported that he saw a bobcat that looked like this:

photo source: Defenders of Wildlife

I told him it was his birthday bobcat. I once had a birthday bear. Back when Jonika lived with us, Stan and I hiked on the Jones Creek Trail in Galena Creek Park on my birthday. We had Jonika’s dog, Gidgit, with us. Gidgit was off leash when we were coming back down the switcbacks, and a bear stood up to look at us from the bushes on a switchback below. Luckily, Gidgit, the best dog ever, came when I called her and we put her on leash. The bear was a beautiful cinnamon color although it was a black bear, the only kind of bear we have here. We bushwhacked down to the left to avoid the lower switchbacks. I have always considered that bear my birthday bear. I was happy to hear that Andy saw a bobcat on his birthday celebration day.

Sue arrived from her run shortly after Andy

We had time to enjoy the beach, and the water was even warm enough to swim.

photo by Stan Macdomald

Then we headed back to Reno for a birthday dinner at Southcreek Pizza with Nana and Papa.

Nana and Papa both wore red and swore they did not plan it

Then on Andy’s actual birthday on Tuesday, he got his birthday pinecone and went off to school, cross country practice, and viola lesson. Stan cooked a smoked tri tip with corn on the cob and Texas Toast for the birthday dinner with a special request pecan pie for dessert. Andy had some cards to open and a couple other gifts too. I even printed the happy birthday emails from his dentist and doctor. The doctor’s office actually said, “We hope to see you soon!” That is like saying, “We hope you get sick soon”!

Also on Andy’s birthday, my sister Sue and I went to look for our grandmother’s grave. We knew the cemetery but we didn’t know where the grave was. We walked all over looking at all the names on the gravestones, but we couldn’t find hers. So we called our dad.

He suggested we go to the office, so we did and the woman gave us a map then said, “I’ll take you there.”

We found it in a nice shady spot.

I had not been to her grave since her funeral. Our grandmother was not a happy drinker and I usually only had time to visit her after work, when she had already had her afternoon drinks. I walked out on her several times when she said things that were too mean for me to stay. When she was not drinking she was fine, although she spent her life not hearing well and not wanting anyone to know, so it was hard for her to make friends. She also carried that Catholic guilt secret about being a divorcee in 1935 rather than a widow as she told everyone. But in her 90s she spilled her secret to me and that eventually led Sue to do the research and find my dad’s half sister and brother and their wonderful extended family and so much love added to our lives. Thanks Gram, for sharing that secret before you died.

This was a good visit because Sue and I were able to talk about our best memories of Gram:

  • Taking us to Cubs games on the el and pushing us under the turnstile saying she’s over 12 when we weren’t (to get us in free on ladies day).
  • She owned Wrigley stock and was sent gum frequently and she always shared it out of her purse. My favorite was Blackjack, the licorice flavored one.
  • She also had Swedish fish, and nonpareils, and chewy things she called gummies (like precursors to fruit snacks but much harder). She also loved Fannie May candies and usually had a box she would share.
  • She taught us to knit and do other crafts: lots of homemade Christmas ornaments. Susie still enjoys knitting, like me, and she made a beer cozy for Stan!

It was good to remember the good things about Gram, even if none of the sweet grandmother cards ever worked for her. We got some good things from her and we wouldn’t be here without her.

Sue also got to spend time with my dad, who wouldn’t be here without Gram either.

We went to another cross country meet, and this time Papa came too.

photo by Melissa Knight

Great birtday for Andy, great visit with my sister Sue, and great memories of Gram.

Family; and Frustration

The title may be misleading, but the odd semicolon is intentional.  This week brought family visits which were wonderful. The frustration is my mouth.

First the family visits: My sister Sue is visiting from Houston for two weeks.

at Icecycle Creamery
When she saw the cattle horns made out of bicycle seats and handlebars, she had to do her hook ’em horns as a two time proud University of Texas mom.

We have had a lot of fun sharing old memories. She reminded me of things I had forgotten about – a game we made up on our front steps that we called Watercolors. One sibling would be the caller, and each stair had a color associated with it. When a color was called you had to jump to that stair. And when the top step’s color was called you had to get to the top first to be the next caller. And I reminded her about roller skating around our big furnace in the basement that had concrete floors and space around the whole furnace, so you could go around and swing off pipes and really get up speed.

We also had a visit this week from cousin Teddy and his gal Damaris. It was my step brother Brian’s birthday and Teddy’s had been the week before, so we celebrated both.

Damaris and Stan
The whole family
My dad and Brian, the birthday boy, ordering
Brian’s birthday dessert with his mother Anita and Andy across the table

Sue is the one that did the research to find my dad’s half brother and half sister. For the past 6 years we have been blessed with wonderful additional family to love. Thank you Sue!

Teddy and Damaris with my step mom Anita

It was a great, but too short, visit.

Sue has enjoyed going to aqua fitness with me. And we spent some time at the Truckee River with her. 

skipping stones

One of the best things we did was to go through old photo albums.  There were lots of favorite pictures. Here are a few:

Our mom as a happy first time mom, our dad as a proud first time dad, with our brother, Tom
Our mom as a happy first time grandmother with baby Ellie

And Sue said that she was able to tell our Grandma Saunders that she was pregnant right before Grandma died, and Grandma clappped.

My brother Pete helping mom in the Hoyer lift on Halloween. I told Pete that he is too scary to ever be my caregiver. But this shows what a great caregiver he was for mom. He said they always tried to have fun.

And now I will tell you about my frustration. My latest Botox treatment on my saliva glands has left my mouth parched dry and uncomfortable. It is an inexact science of trial and error. I will have to wait for the Botox to wear off in about two months, and try various dry mouth products. I also still have irritated eyes and I was really hoping that discontinuing the Robinul (glycopyrrolate) would solve my irritated eyes too. The good thing about it is I don’t drool.

But these frustrations are minor compared to the anxiety felt by all the people in the path of hurricanes Harvey and Irma, and especially the ALS patients. I heard from one patient friend in Gainesville, Florida and he was worried about power outages for his external vent and cough assist machine. But then he heard from his advocate that he would be moved to a shelter with back up power. I also thought of the ALS patients thoughout the Carribean and Cuba, Florida, Alabama, Texas. To be unable to move yourself with storms like those bearing down would be higher anxiety than even my Xanax could help. I hope you all had help to be safe.