Research without drugs

Recently I responded to an email from the ALS Association that requested volunteers to work with graduate students studying motor speech disorders.  Last week I met with four students from UNC in my home.  The students are studying speech irregularities in ALS patients.  The initial meeting was to get to know me and to learn my ALS story.  I was a little concerned that they would not be able to understand me even though they study speech disorders.  I played a couple of videos for the students so they could compare my voice in August 2016, April 2017, and currently.  We chatted for a while and then the students conducted some speech testing.  In addition to meeting at my home, there will be an in-class meeting where I will be joined by another PALS (person with ALS).  The two of us will take part in a panel discussion about our life experiences and communication issues relating to ALS.  Details of that meeting will follow.

I have also volunteered to work with a Duke student who is gathering photos for a project in her Documentary Studies class.  She hopes to show the side of ALS that only PALS and CALS (Caregivers of person with ALS) know.  She is accepting picture submissions and is also willing to visit PALS at home to take photos.  She was also looking for ALS patients willing to be photographed during a typical visit to the ALS clinic.  I volunteered and we will meet at my next clinic visit.  It should be interesting; my visit is scheduled for Halloween!

Segueing now to my personal ALS UPDATE, I can report that my arms are losing their flexibility.  It is hard to hold them over my head and it is becoming a challenge to cut some foods.  What about my hands, you ask?  Typing is pretty much the same – two hands on the keyboard, but it’s much slower.  Discrete finger movements are hard and I drop a lot of things.  Holding my electric toothbrush is OK but turning it on sometimes requires two fingers instead of just one.  Squeezing a tube of toothpaste is not always easy either.  Picking up a full glass of water is a tricky task and drinking with a straw is a necessity.

I stopped walking about 9 months ago.  My power wheelchair is my means of transport.  It gets me almost everywhere.  I was given a few exercises by my PT that I try to do more often than not.  The exercises are really for endurance because it’s not really possible to build strength.  And I am still fighting so that I can stand up and bear weight.  All things considered, I’m not feeling too bad.  I get tired faster and like to take naps.  One thing I will be working on in the near future is the Walk to Defeat ALS.

SAVE THE DATE
April 21, 2018

 

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