Neuro Note 5 - Amyotrophic Lateral Sclerosis (ALS)

     

    I’m back with another Neuro Note, and this week’s topic is Amyotrophic Lateral Sclerosis (ALS), most commonly known as Lous Gehrig’s disease, which is a progressive neurodegenerative condition that affects one’s motor abilities. I read the story of Lauren “Lolo” Spencer, a rambunctious woman who was diagnosed with this condition at the age of 14 (Bergeron, 2019). The typical prognosis for ALS is 2-5 years but because she was diagnosed at such an early age, she had been living with it for 18 years in 2019 when the article was written, so it’s been 22 years now! Lolo was a very energetic girl who loved running, dancing, and street hockey, but she noticed she was a lot more fatigued and felt like her muscles were weakening despite being so active. She started using a wheelchair to get around at 19, five years after her diagnosis. At the age of 32, she said “My body has changed very slowly, thankfully, I just made a decision that I was going to live my life to the fullest. [ALS] was not going to be my story” (Bergeron, 2019).

    Although Lolo is thriving, she shared that accessibility to buildings, the street, and public transportation are a constant challenge for her and others who use a wheelchair to get around. She soon realized that there weren’t many online resources of people with disabilities telling their first-hand daily experiences, so she decided to create her own platform to share her own “real deal”. Her Instagram account is @itslololove and her YouTube is Sitting Pretty. Her goal was to become a positive influence on the disability community, doing product reviews, life hacks, giving dating and relationship advice, and general life advice for dealing with the harsh ways of society. She shares a lot of bright moments in her life like traveling with friends, clubbing, and doing fashion shoots, but also wants to avoid creating “inspiration porn”, which is a term used to describe how others view people with disabilities’ every move as being inspirational. Spencer states, “we’re able to live our lives as fruitfully as we can in spite of having some level of limitation” (Bergeron, 2019).

    I thoroughly enjoyed reading Lolo Spencer’s story and her experiences with ALS. This helped further my learning by providing a positive insight into what people with this condition can experience with the right mindset, although other factors like age and cognition before diagnosis are important to consider. I admire that she refused to let ALS define who she is and wanted to help others who may be experiencing the same or similar obstacles by setting an example that may inspire them to make the most out of their life. I chose this source to read among the others because of that reason. It’s important for me as a future OT practitioner to gain this insight to better assist my clients with their needs as well as advocate for them when it comes to accessibility, for example. Something I learned from the reading is that a prognosis of 2-5 years is not a guarantee for everyone who is diagnosed with ALS and that it is super helpful and important for people to be a little transparent at times so others can know they’re not alone and hopefully benefit from seeing it. The link to Lolo’s story is included in the reference below!

References

Bergeron, Ryan. (2019, June 8). Diagnosed with ALS at 14, she’s now a disability lifestyle influencer. CNN. https://www.cnn.com/2019/05/31/health/turning-points-lauren-lolo-spencer-als-disability-lifestyle-influencer/index.html