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.

3 thoughts on “Folsom Prison Blues

  1. Hi Meg – thank you again for this wonderful blog. I am sitting here with my mom and I guess the following questions/comments come to mind. Perhaps you will come across this at the meeting this weekend.
    – we have found there is very little in the literature to help us out with caring for our 88 year mom with Bulbar ALS and mild amnestic dementia; for example, decisions about feeding tube and BIPAP were very difficult because there did not seem to be appropriate resources to explain the procedures and equipment to her, and also decisions about their use seemed kind of delayed, which I suspect had something to do with her age
    – sometimes I think the only reason we got the correct diagnosis was because I recognized her symptoms as being very similar to yours and actually asked ‘could she have bulbar ALS?’ – which finally prompted the neurologist referral. Up until then, people seemed content to attribute her massive weight loss and speech loss to some kind of small stroke. In fact, she was even put on post-stroke medication until we got the correct diagnosis. The neurologist actually told me the incidence of ALS was increasing because of increasing life expectancy (more people being diagnosed when older). So, I guess I wonder if family physicians and geriatricians should be more aware of how ALS could present in the elderly so that it can be properly diagnosed. I work in geriatrics and think about all the patients I’ve seen who have unexplained weight loss and seemingly slurred speech. THey end up on blood pressure, cholesterol and blood thinner medications, when perhaps they might have ALS.
    – if I think of more questions, I;ll let you know. I’m mainly interested in anything you see or hear about ALS in the very elderly.
    – you’re going to be a rock star this weekend! I wish we could come and meet you but things are progressing pretty quickly here and I dont’ want to be too far away.
    Love Barb

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s