Often Awesome: An ALS Love Story

For this neuro note I decided I wanted to learn a little more about ALS, amyotrophic lateral sclerosis.  We have learned some about this neurodegenerative disorder in class, and to me it is one of the most heartbreaking diseases anyone can have.  ALS is a motor neuron disorder in which there is degeneration of both upper and lower motor neurons causing damage to the brain and spinal cord (Amytrophic Lateral Sclerosis, n.d.).  In ALS muscles weaken because of the deterioration of nerves that carry impulses to the skeletal muscles signaling them to contract.  ALS progresses very quickly and the average life expectancy after diagnosis is 2-5 years.  Muscles will atrophy to the point where an individual cannot move except for blinking and will need full-time care to perform the most basic tasks.  I watched a YouTube series called Often Awesome The Series: An ALS Love Story for this neuro note and learned more about Tim LaFollete and his battle with ALS. 

Tim’s story is both inspiring and heartbreaking, and I will admit I did tear up often watching him.  Tim has a very rare form of ALS, familial ALS, which occurs in only 5-10% of ALS cases (Amyotrophic Lateral Sclerosis, n.d.).  Tim’s mother died of ALS when she was 33 and his grandmother died of ALS the same year his mother did.  After Tim was diagnosed with ALS he researched further back into his family history and learned that many other family members also died of ALS, but they were not likely diagnosed because of the lack of knowledge about ALS at that time.  When Tim started to have a few issues like foot-drop, he knew that ALS could be a possibility, but still wanted to remain positive.  The diagnosis came as a shock to him and his wife, Kaylan, but they made the decision to fight as hard as they could for the remaining time they had left. 

The biggest take-away for me after watching Tim’s story is the importance of having a supportive family and social network when battling an illness like ALS.  Tim and Kaylan immediately start informing their friends about Tim’s diagnosis and try to foster support from their community.  Tim’s friends start a movement to provide him with the best support possible called the Often Awesome Army.  His friends and community rally around him saying that ALS is too much for one to go through alone.  They throw benefit concerts and art auctions to help pay for a car with wheelchair access and cover his medical bills.  They have donations from all across their city of a motorized wheelchair and assistive devices that he needs.  He has people cook meals for him and clean his house.  All of his friends even all get the same tattoo he got whenever his mother and grandmother died of ALS to help them feel solidarity with him.

Because Tim’s form of ALS is very rare, I decided to learn a little more about familial ALS.  I did not realize until I started doing some research that familial ALS is similar to Huntington’s disease in that it is autosomal dominant in most cases and that a child of a person with familial ALS has a 50% chance of developing the disease (Renton et al., 2011).  Familial ALS can be caused by a mutation of several genes such as C9orf72 or SOD1 (Renton et al., 2011).  Tim’s ALS was caused by a mutation of the SOD1 gene which only occurs in 15-20% of familial ALS cases (Amytrophic Lateral Sclerosis, n.d.).  Because his type of ALS is rare even within the familial types of ALS he participated in research trials so that researchers can learn more about this type of ALS. 

This video series is very valuable for occupational therapy students and practitioners.  I learned so much about how community and family involvement can impact someone’s battle with neurodegenerative disorders like ALS.  I know Tim was constantly encouraged by his Often Awesome Army that was continually trying to provide him with the mental support he needed and the physical adaptive equipment and assistive technology that he needed.  The series also includes many adaptations Tim made throughout the progression of the disease that helped him to continue to engage in the occupations that were meaningful to him.  One of those occupations was playing bass in his band.  As his hand muscles started to weaken he was no longer able to grasp a pick to play his guitar.  His band was very supportive of him, and he modified his bass playing by playing on a keyboard that played bass notes instead so that he did not have to grasp the pick.  Playing in his band with modification gave him a significant amount of meaning and purpose as his health deteriorated. 

Amyotrophic lateral sclerosis - Genetics Home Reference. (n.d.). Retrieved from https://ghr.nlm.nih.gov/condition/amyotrophic-lateral-sclerosis#inheritance

Episodes | Often Awesome The Series. (n.d.). Retrieved from http://www.allacesmedia.com/oftenawesome/category/episodes/

Renton, A. E., Majounie, E., Waite, A., Simón-Sánchez, J., Rollinson, S., Gibbs, J. R., ... & Kalimo, H. (2011). A hexanucleotide repeat expansion in C9ORF72 is the cause of chromosome 9p21-linked ALS-FTD. Neuron, 72(2), 257-268.