an apple a day

get out your best notetaking pen

I haven’t talked about my job on here, for a variety of reasons, but (drum roll) I work in neurodegenerative disease education.

Frankly, I stumbled into this career on accident 6 years ago, but I absolutely love it. I tried something else for a quick 8 months, which only solidified my feelings for the field.

I’m breaking my work-talk silence because there is cause for celebration: April was Parkinson’s Awareness Month and May is PSP Awareness Month!

I know that not all of you enjoy school, so bear with me as I teach you a thing or two. There’s a poem at the end of it.

Typical caveat: All opinions expressed here are my own and do not inherently reflect that of my employers.

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neurodegeneration 101

Neuro = brain
Degeneration = progressive damage
Neurodegeneration = progressive brain damage

The most known neurodegenerative diseases are Parkinson’s disease, ALS and Alzheimer’s disease, but there are a lot more that people aren’t as familiar with.

I specifically work in the Parkinsonism and atypical Parkinsonian disorder world. For me, this has means working with people who are personally affected by and professionals who see patients with:

• Parkinson’s disease (PD)

• Progressive supranuclear palsy (PSP)

• Corticobasal degeneration (CBD)

• Multiple system atrophy (MSA)

To give an extremely oversimplified explanation of these:

PSP, CBD and MSA differ from Parkinson’s disease, and differ from each other. These diagnoses are life-limiting, which a 5-10 year life expectancy after symptom onset. No one person with PSP, CBD or MSA will have the same set of symptoms or disease progression. There is currently no cure, or disease-modifying treatment available for any of these diseases (including Parkinson’s).

Research is the way these things change. And with Trump threatening insane budget cuts to the NIH and NSF, this research (and that of most diseases) is at a huge risk. Contact your congresspeople. Beg them to fight back.

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poetry corner

Now that you have a little bit of context to the science, I want to talk about the personal side of the diagnoses. I’ve had the honor of walking alongside hundreds of people who have received these diagnoses over the years.

It’s my job to break down next steps and help them understand how they can manage their symptoms and adapt to their new life, advocate for them by educating healthcare professionals about these diseases — all while using my love for writing in the process.

I wrote this poem a few years ago, inspired by the countless families I’ve met who have dealt with these diagnoses. I hope it gives you even a small bit of insight into the experience of having / loving someone with a neurodegenerative disease.

To note, this poem was written about a metaphorical person with Parkinson’s disease. PSP, CBD and MSA, although also Parkinsonisms, are different and would include some more nuance.

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And with that, the bell rings. Thanks for tuning into today’s class! If you are curious about how you can support people with these diagnoses, check out these links:
- Parkinson.org
- Psp.org
- MissionMSA.org

Happy Parkinson’s and PSP Awareness months!

xoxo, court