This past Sunday I joined in a fundraising walk for the ALS association in honor of one of my lovely coworkers who recently has been diagnosed with ALS/PLS. We were joined by a good amount of people from work and a whole hoard of her family and friends. I’ve included the link below to the walk itself. Obviously you can no longer register to participate, but there is a venue to donate to research to find a cure for ALS if you wish to contribute. Through the walk they were only able to raise about 70% of their goal.
Below is an info sheet about ALS specifically, directly from the ALS association. It is a degenerative debilitating disease with no cure and a very unfortunate predictable outcome. If you aren’t familiar with it and want a mental image, think Stephen Hawking. It affects the body but not the mind, eventually essentially trapping the individual in their own body. Luckily with today’s technology though they still have ways to communicate and have a life somewhat.
Amber’s current diagnosis is PLS, or peripheral lateral sclerosis, which is a bit different than ALS. It has many of the same symptoms of ALS, which is why it’s difficult to diagnose one vs the other sometimes. It progresses slower, isn’t necessarily fatal, and doesn’t debilitate 100% as ALS does. Though it affects every individual differently both in severity and progression, it is still a degenerative debilitating disease. From what I understand her doctors are basically just watching her symptom progression. At any point they may switch the diagnosis over to ALS depending on what her body is doing. Of the two sucky diagnoses though PLS is the better of the two evils, so to speak, so keeping our fingers crossed that that switch never happens.
Amber is one of the nicest and most cheerful people I’ve ever met, even in the face of this crappy situation. She’s also one of the best nurses I’ve ever had the privilege to work with. She’s super knowledgeable, absolutely loves what we do, and always willing to help anyone with anything at any moment.
I also have to give a shout out to her awesome fiancé. I don’t think that enough attention is paid to the individuals behind the person with the diagnosis sometimes. Over the summer they did an epic trans-continental road trip vacation, culminating in him proposing in front of the most perfect sunrise over a desert scene. It was gorgeous and very envy worthy. I know that everyone here at work cyber stalked their entire trip, living vicariously through them the entire time. Just from observing from the outside, he’s always there for her in everyway possible, and has been since way before the struggle of getting a diagnosis even began. That’s rare in this day and age and not a thing to take lightly.
The ALS association uses the funds from the walk to help fund research, but also to help those diagnosed to advocate for themselves and to help provide compassionate competent care, basically to live their best lives for as long as they possibly can. If you feel so inclined please go to the link at the top of this post and donate. Even a little bit goes a long way. If you are unable to donate at this time, please take the information that you learned from this post and pass it along. Maybe that next individual would like to try to make a difference as well. Thank you 🙂