“The More You Know “ Chapter 52
When I was told I might have a motor neuron disease (ALS) the first thing I did was look on the internet. That was my first mistake.
I found the definition, medical explanations, life spans, organization websites and other general information. There are several great organizations that provide helpful resources, information and are leading the fight to make a change.
It was scary and overwhelming. However, what I needed was a more personal connection to see how others are living with ALS. Something to give me hope that living with ALS is far better than dying from ALS.
I started researching blogs, vlogs, podcasts and facebook groups. What I found were many older and a few current sites of them all but not many. When thinking about what I was looking for I used my mission statement as a baseline.
“My blog shares with you my ALS story and how it has became my mission to teach others about ALS. Along the way, I will share stories about me and my life and how I am living with ALS and only so much time left... but also how I filled my bucket so full that you won’t see the "born" and "died" dates, rather ALL of the stuff in between that filled my DASH”
I quickly realized that out of the estimated 30,000 PALS in the U.S. living with ALS, few are sharing their experiences. I totally understand asking someone to share such a personal experience is really hard. How does one expose themselves when you are already very vulnerable? You open yourself up to everyone on the internet and sometimes you get trolls commenting on the information you are trying to help others with. I have been blessed not to have any trolls and have met many beautiful people through this blog.
I also found people take in information differently. The time, attention span, depth and delivery all play a part in how we want the information. If you want it quickly; Instagram, Facebook and Snap might be your thing. Some love reading more detailed stories, so blogs and photos may be good. Lastly if you like to listen to conversations and feeling apart of the long story podcast are great.
So I put together a list of some great sites I’m sure you will like below.
Podcast
ALS Caregivers and Beyond
Lara Garey & Mary Ward explore their journies in the context of being an ALS Caregiver and the Beyond. Beyond is the after of life of ALS when the person they are caring for has passed away. They are authentic in their conversations, strong in advocacy, embrace humor, and share BIG feels as needed. Mary has been caring for her husband, Tom, for many years, the last thirteen have included ALS. Lara cared for her husband, Tom, for six years, from diagnosis to death. Tom died in July 2022. Yes, each of their husband's names is Tom and they are veterans.
Website
Her ALS Story
Her ALS Story in April 2021 with the hope of creating a network for young female PALS to lean into. I was also motivated by my belief that as young women who are constantly faced with the harsh realities of ALS, our voices are especially powerful in revolutionizing treatment options and finding a cure.
Brooke Eby
Brooke is a beautiful young lady bringing life to ALS through her Instagram page with 83k followers. She is a superstar of tv, magazines and fundraising.
Brooke says “she spent a couple months crying and shoveling M&Ms into my face before deciding to attack ALS head-on by driving awareness through social media. Through the support of my family, friends, and work, I've been able to laugh in the face of ALS. “
Hashtags
Hashtags are a great way to find information over many sites. Using the hashtags below will get you to my content and more.
We all deal with information differently. Some choose to ignore it when it’s to hard to face. Some like little bits at a time and some face it head on. No matter how you face it there is a way for all of us. I hope the sites above help you learn a little more about ALS.
Love and blessings
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Dave … I really love how you take sour lemons and make lemonade out of them 💙
Thanks for sharing your sites. I enjoy reading anything from the inspirational stories, the humorous approaches, the life experiences, and especially the realness!
Thanks for continuing what you do in teaching, inspiring and bringing such a heightened sense of awareness to people living with ALS all at the same time bringing us so much laughter!
You have helped me so much with looking at the glass 1/2 full instead of 1/2 empty. I have started a morning ritual before I start my day , and I fill out my Gratitude Journal, and I have you to thank for this in all you sha…