We in the Rare Disease Community Can Learn From Each Other

ALS is a life-changing diagnosis, and like many newly diagnosed patients, I was disappointed and frustrated at what felt like a standstill in medical progress against the disease. “If they can send humans into space, why can’t they cure ALS?” I’d lament,

Now, 11 years later and with still no cure, I realize I wasted a lot of time and energy worrying about ALS, and not being patient and learning to live with it.

Easier said than done, you might say, and I agree. But something that helped me was to recognize that there was a larger community of rare diseases, and that if its members paid attention and learned from one another, we wouldn’t feel so alone in our individual challenges.

How others cope with their rare disease

I now look for and enjoy reading stories about how others with similar neurological diseases are learning to cope. For example, I gathered many motivational ideas from an interview actor Michael J. Fox did with AARP late last year.

Recommended Reading

January 27, 2022 Columns by Kristin Neva

The Secret to Finding Balance as a Caregiver

Diagnosed with Parkinson’s disease in 1991, Fox still managed to find acting roles for the next 30 years. But he finally gave up acting in 2020 due to the unreliability of his speech. Throughout his many disease challenges, he rolled with the punches, dusted himself off, and kept moving forward. His attitude made me smile.

My key takeaways:

• Fox kept shifting his focus to what he had the ability to do rather than what he couldn’t do anymore.
• He believes that gratitude makes optimism sustainable, and advises, “If you don’t think you have anything to be grateful for, keep looking. Because you don’t just receive optimism. You can’t wait for things to be great and then be grateful for that. You’ve got to behave in a way that promotes that.”
• His advice for those living with Parkinson’s is to have an active life and avoid being isolated and marginalized. He recommends exercise, eating well, and maintaining friendships.

Sounds like something we all can follow. It’s a great article and I recommend that everyone take the time to read it.

Connecting with my community

Last week, I joined about 20 other Bionews patient and caregiver columnists like me on a Zoom call. Bionews is a unique organization that represents more than 50 rare disease communities. It’s a virtual company with patient and caregiver columnists, news writers, editors, and support staff scattered across multiple countries, as well as the U.S.

I always enjoy meeting the other columnists, and on this particular call, we even had people from the U.K., New Zealand, and Austria.

After we discussed business-related items, we got down to the fun topics about ourselves. I had to laugh after learning almost half of the group (including me) is binge-watching the new fourth season of the Netflix series “Ozark.” As we chatted, it struck me how we all shared a determination to live with our particular disease conditions, and that we were all committed to being a support for others in our disease communities. Afterward, I felt their strength and optimism.

Don’t let ALS define who you are. My ALS is part of my identity, but it doesn’t own me. Learn to live with ALS. Learn from other patients in this community.

Let’s help each other live well while living with ALS.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.