Tag: Assistive Technology for ALS

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.

Assistive Technology for Loss of Speech

The first assistive technology I tried was a Boogie Board

It is a cool LCD writing board where you write with a stylus and erase with the push of a button, which makes it more convenient than pen and paper. Sometimes other people get a hold of it.

The next assistive technology I used was an Android app on my phone called Speech Assistant. It has a wide variety of downloadable Google voices and customizable categories. I still use this because sometimes all I have with me is my phone.

I thought that was really cool, and then I found something cooler!

I work as an elementary school administrative secretary and school districts are very adept at complying with the Americans with Disabilities Act  (ADA) because of working with disabled students. I had to fill out some paperwork and get a letter from UCSF about my diagnosis. I then met with my principal, the district Risk Manager, and the head of labor relations about what I qualify for under ADA. They arranged for me to meet with an Assistive Technology Specialist for the school district.

Robbin Dunn met me at my office and she was wonderful.

She showed me an iPad program for text to speech that blows away the app on my phone. It’s called ProLoquo4Text and has unlimited phrases and unlimited accounts 

I currently have a loaner iPad from Robbin’s department. I have been able to set up a work account and a home account and even a Spanish speaking account since I have loved speaking Spanish since high school. My only complaint is that the selection of voices is limited. The program was created in the Netherlands and even the so called American voices have an accent.

We had another meeting on Thursday this week with the same group plus Robbin to determine what the District will buy for me. I feel very fortunate to be working at a place where this is available. They are going to buy me an iPad Mini and the ProLoquo4Text program as well as a case and keyboard that I get to choose.

It has been challenging getting used to typing conversations. Often when I am done typing my comment the conversation has moved on to the next subject already. And holding conversation during meals is hard too. I have gotten comments from people such as, “that’s really cool” or “that’s interesting”  I can tell it makes some people very uncomfortable  I am an introvert and usually pretty quiet anyway.

The reflections make it hard to see. It says, “Hi, I’m Meg “.

I had a chance to practice with my iPad last weekend in Las Vegas for my father in law’s 85th birthday – more love and connection even if by artificial voice.

Then I heard about something even cooler. A teacher I work with ran into some guys from a startup in the Bay area called Vocasso. When she heard what they are creating, she put me in touch.

Here is the description from Ryan McVicker:

Vocasso is the human-machine interface that enables seamless integration with the digital world. Our core technology, the Vocasso soundless microphone, not only produces speech for mute Stroke survivors, it enables users to interact with digital devices without making a sound. Simply put on our headset, connect via Bluetooth to a smartphone or PC, and the words you mouth let you soundlessly control all of your digital devices. To find out how this cutting-edge technology will shape the future of communication, visit http://www.vocasso.com.

It will be interesting to see how it will work for ALS patients who have limited use of their mouths to even mouth words. But it sure sounds cool!

Please  consider a donation to my #whatwouldyougive campaign to raise money to end ALS.#whatwouldyougive

Donation accepted through 8/31/16

Thank you to my many many awesome donors!