Technology has made a huge difference for people currently living with ALS.

Last month we went to see a few movies at the theater. Who am I kidding? Every month we see a few movies. It’s a weakness. Not only do I anxiously await the movie itself but I adore watching the previews. Despite the fact that I regularly receive notifications and press releases regarding upcoming movies, sometimes there is one I haven’t heard of and I am actually surprised. It’s awesome. Twice last month, however, I was thrown into a state of emotional unbalance. Not from a movie preview though, from a Microsoft Surface commercial about former NFL player, Steve Gleason.

ALS, officially known as Amyotrophic lateral sclerosis is more commonly referred to as Lou Gehrig’s Disease. It is a neurodegenerative disease that affects nerve cells in the brain and the spinal cord. In layman’s terms, the muscles slowly stop functioning. Muscles that control movement, muscles that control speaking, muscles that control swallowing, muscles that control breathing. For most, it’s a physical ambush leaving the patient’s mind the only thing still working. The most noteworthy person still living with the disease is Professor Stephen Hawking.

What moved me so much about the video was that it brought back a flood of memories about my Uncle Ken. Until I moved to California in my mid-20s, I had lived pretty close to Ken and even worked with him for a time at our family business. He was a very active man who loved music, regularly played softball and volleyball and was filled with dreams of someday owning his own softball clubhouse bar. Scott, Ken and I used to talk about that a lot and despite being my uncle, he was also my friend.

We lost my Uncle Ken to ALS several years ago. His life would have been dramatically different had technology been what it is today. -

Unfortunately, Ken was diagnosed with ALS while I was living in California. We would return home a few times a year but other than that, I didn’t see him much and reports of his updates were never positive. It was a time before the internet of today, before Facebook, before smart phones. Because of the distance and time between visits, I didn’t see the gradual deterioration. For me, he was dramatically different every time I returned home. The first time I noticed anything it was minor. He had difficulty picking up silverware at a family reunion. The last time, I remember one of my aunts telling me that despite his frail body, his brain was just fine; yet I had difficulty even talking to him.

Team Gleason shares how Steve is able to communicate (and inspire) using Microsoft Surface. I’ve seen how technology has changed over the years and this is a great example of how technology can improve our lives – and not just the ability to tweet, text and share our everyday happenings. To truly change the quality of lives like that of Steve and his family. I wish this had been around when Ken was battling this horrible disease because it certainly would have changed his life.

There is no cure for ALS but at least technology is bridging some gaps. For more information, visit the website, the “Team Gleason Experiment” and follow Team Gleason on Twitter or Facebook.

65 thoughts on “Philanthropic Friday: ALS

  1. I haven’t heard of ALS before, that sounds really rough! It is awesome that technology allows him to communicate, that is one thing I am thankful for to live in this modern age!!

  2. I have heard horrible things about this disease. This is just one more reason why I love technology, though. Hopefully it will continue to improve the quality of life for some people!!!

  3. So sad. But it is encouraging that technology is advancing in so many medical areas. I cannot wait to see what the next 10 years bring.

  4. What a touching story, I hadn’t heard of this before. Love how technology can be the connecting force in a father & so relationship. Sorry to hear about your uncle, but in the same breath happy that with advancements now, things are looking up for the future!

  5. Damn that is some story! The technology that surrounds him and making him communicate with everything and especially his son is simply amazing.

  6. Your Uncle Sounds Like A Wonderful Man I So Agree With You His Life Would Of Been A Lot easier With All The Technology Out There!!

  7. One of my favorite teachers was diagnosed with ALS and passed away. Technology definitely didn’t advance fast enough in his case.

  8. I saw a special about him too; he was interviewing Eddie Vedder. It was interesting to see how the technology made communication possible.

  9. I have faith in God and I believe in man’s capabilities to discover new things ( one of them I hope is a cure for this ).

  10. This story really broke my heart. Such a horrible disease. I’m glad to see that technology can help ease some aspects of the disease and help keep families connected.

    1. It is so tragic to see people and their families affected by things like this. I am so thankful that technology has made it easier on people who are suffering from this disease.

  11. I love it when we’re able to see the positive side of technology. I worked in a separate setting classroom for autistic children and a couple parents donated iPads. The teacher said it changed their whole classroom and really been great for the students.

    I’m so sorry about your Uncle Ken, but I’m glad you have so many great memories of him.

  12. It’s sad that with how far we’ve come regarding technology that there are still thousands of diseases left without a cure. I’m glad there is still options like this out there for those suffering.

  13. It’s all about perspective, and Steve Gleason has a great outlook. I hope they find a cure soon. I have been learning a great deal about assistive technology and how much independence and dignity can be achieved with the right tools.

  14. This is a terrible disease. Sorry about your uncle. You will always have the memories. I am so glad we have the things for keeping in touch now. My sister is going to her first baby in Aug. and if it were not for technology I would not be able to see her grow, Or talk to her daily.

  15. It’s incredible how far technology has come… that said, I wish more of money was spent on research on finding a cure for ALS and other devastating diseases.

  16. Technology is amazing! The opportunities it offers for communication, not just for people with ASL but with Cerebral Palsy, autism and other communication disabilities, is amazing! The communication is such a basic right and everyone should have a way to communicate!

  17. This makes me so emotional. My father-in-law died with ALS and it was so hard on my husband. I know this would definitely have made things so different for him.

    1. Sorry for your loss, Lexie. I was a basket case at the movie when I saw it. Although I cannot imagine how devastating it was/is for you and your family.

  18. Ohmy goodness. What a sad story. Lou Gehrig’s Disease is such an awful disease. I love hearing that there is a little hope and will look into this more with the Surface for a friend. Thanks for sharing this.

  19. My husband has been a fan of guitarist Jason Becker, a 20+ year sufferer/survivor of ALS and he, too had a need for advanced tech to help him communicate, and in doing so, he can still compose masterpieces. It is amazing what some of the advancements can do for ALS patients.

  20. I’m sorry to hear of your uncle’s struggle with ALS. It seems to me that ALS is one of the most horrific conditions because the person’s mind is still completely functional while their body deteriorates. So sad, but it’s good to know that technology can make a difference in the person’s ability to stay connected with the loved ones and the rest of the world.

    The same is true with autism, as iPads and other tablets are proving to be lifelines in helping autistic people communicate.

  21. Wow – how cool is that. ALS is an awful disease and to have something that helps a person in such an impactfull way is great. I really hope they find a cure someday.

  22. This is a really terrible disease. I have a good friend from college that has ALS and it is terrible. I hate seeing the deterioration. I love the positive that is being done for this disease.

  23. My hope is that one day ALS will be curable. It’s such a difficult disease. I am glad to see technology being used to make lives a little bit easier though – that’s exactly what it should be used for.

  24. So sad, but it’s good to know that technology can make a difference in the person’s ability to stay connected with the loved ones and the rest of the world.

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