Over the past couple months, I have been learning about different neurodegenerative conditions that seem to be almost unpredictable in the course they will take. There is statistics out there about the average life span and the most proven treatment, but there never fails to be outliers. Why do some people live longer? Why do some people not take the average course? I do not know if we will really ever get the answer to these questions, but I have stumbled upon a website that helps these patients track the course of their disease and compare it with thousands of others like them. Jamie Heywood, a mechanical engineer, gives a TedTalk on this website he created after his brother received a diagnosis of ALS. The website is incredibly inventive and displays the help people can be to each other without the advice of medical doctors. It also gives interesting data on why some peoples course of diseases differs, as it gives room to record medications taken, interventions tried, and general side affects and emotions throughout. When Heywood was talking about the many different algorithms and code put into this website, my OT brain couldn't help but get slightly confused. However, Heywood does a great job in explaining how the website is set-up for the users and the many different diagnoses' that can benefit from it, making the client-centeredness of it really stand out. It's been 10 years since the TedTalk came out, so I visited the patientslikeme website to see how it has flourished since.
Now, patientslikeme.com has over 600,000 users with 2,800 diagnoses being tracked. A quote on the homepage from Jamie Heywood states, "We started with the assumption that patients had knowledge we needed, rather than we had knowledge they needed. We didn't have the answers, but patients had the insights that could help us collectively find them." This whole idea reminds me of something an OT might suggest a client to do in their disease progression, as far as tracking the symptoms, keeping a journal, or figuring out what works best for you. Heywood mentions that users can print out a data sheet and that many doctors have a great reaction to information and effort the client has put into their diagnosis, and this makes me think that an OT would also really benefit from the information provided. I think it would give us a better insight to our client's diagnosis if they were to be tracking, and I also think a visit to patientslikeme.com could be a good suggestion to give our clients newly diagnosed with a condition such as ALS that differs so much between clients.
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