Embracing Adventure “Life is either a daring adventure or nothing.” ~~Hellen Keller

ALS Empathetic Experiences: a Supplement for or Alternative to the Ice Bucket Challenge

Ice bucket challenge

University of Central Arkansas President Tom Courtway (right) having water dumped on him by UCA Director of Special University Projects/Community Affairs T.J. Johnson as Athletic Director Brad Teague gets drenched by his children.

By now you have probably heard about the Ice Bucket Challenge in support of awareness for ALS (amyotrophic lateral sclerosis), with many individuals requesting donations to the ALS Association. It seems to have started among pro athletes. If individuals declined a challenge, they were encouraged to donate $100 to the charity of the challenger’s choice. If they accepted, they could choose a charity to challenge for. Chris Kennedy was apparently the catalyst behind its current incarnation. He did his challenge for ALS because his wife’s cousin’s husband has had ALS for 11 years. People passed it on without changing it, and it made its way to Peter Frates. Once he challenged people, the ALS Ice Bucket Challenge went viral.

Although I support the overall challenge and am happy people are learning about ALS and donating to ALSA and other organizations that support ALS research and advocacy, I find a couple of aspects of the challenge a little problematic, so I have some suggestions I hope you’ll consider if you’ll be taking the Ice Bucket Challenge. I also have some suggestions for a supplement for or alternative to it in order to help you get an idea what it is like to live with ALS.

Problematic Aspects of the Ice Bucket Challenge & Suggestions for Change

One aspect of the challenge I find problematic is that it’s most often set up as “do this OR donate” and some choose to do it to avoid donating themselves. To me, telling someone, “You can do this or you have to donate…” is, at worst, setting up donating as a non-preferable alternative to taking the challenge, and is, at best, “passing the buck” and expecting others to do something you want done. If you want to see donations to a cause, I encourage you to donate yourself rather than only passing the request to do so on to others. People may be more inclined to follow an example than a directive, and hopefully if you donate AND take the challenge, others will be inspired to do the same. I’m happy to see that many of my friends who have done the challenge have been doing it AND donating, as well as encouraging others to do the same.

ALS Ice Bucket Challenge 19Aug2014 hhe_2087

A group of people appear to the be the RRHS Dragons, taking the ice bucket challenge.

Even with many who are doing the challenge without donating, it has obviously been very successful. As of yesterday, the ALSA had $31.5 million in donations, up from $1.9 million during the same time period last year, and that’s already up to $41.8 million today, up from $2.1 million during the same time period last year. As of a few days ago, at least $10 million was donated due to the Ice Bucket Challenge. (They know this because if you donate on their site, you’ll see an option to mark whether it’s part of the challenge). While some donations were from existing donors, at that time there were 220,255 new donors. As of today, though they don’t mention Ice Bucket Challenge donors specifically, there have been 739,275 new donors. I imagine that they could get even more donations and new donors if everyone who took the challenge or will take it would donate what they can if they can.

A behind-the-scenes shot of Erik’s Ice Bucket Challenge.

Of course not everyone is in a position to donate funds or prefers to support causes in other ways, and that’s okay. Another purpose of the challenge is raising awareness. Although I’ve mentioned before that I think awareness needs to be paired with action to accomplish something, since ALS is something that is not something widely known about, raising awareness is, in itself, an accomplishment. I knew of ALS under the name Lou Gehrig’s Disease, but it wasn’t until this challenge that I was aware I knew people who had lost family members due to it or that I looked up more about what it’s like living with it. If you increased your own awareness due to the challenge, either having taken it or having seen someone else do it, then I think that’s an awesome step, and I do hope it will lead to some kind of action on your part as well.

Although there is the potential for awareness to be raised just by the videos being passed around because some people might hear or see “ALS” and take the initiative to look up what it is, there is also the potential for people to just be entertained by the videos and move along (although I suspect the entertainment value is part of what has made this spread so successfully, so there’s something to be said for that). I have even seen a few take the challenge who didn’t seem sure what they were doing it for. If you’re taking the challenge, in addition to learning more about ALS yourself, I would encourage you to take it a step further and actively help others to become educated. Perhaps consider providing a few facts about ALS in your video so that if a person is watching, they’re learning. This video from a veteran who has ALS is a great example. You might also choose to post a bit about why you did the challenge or what you’ve learned along with your video.

ALS Empathetic Experiences Video

Although no one has called me out for the challenge as of yet, I decided to do something a little bit different which I’d also like to suggest to others to either supplement the ice bucket challenge if you’ve already done or are going to do it, or even as an alternative if you have not been challenged or have chosen not to accept the challenge. What I did was to try some empathetic exercises suggested by Bo Stern whose husband has had ALS since 2011. In the video below, which I made a few days ago, you’ll see me try three of them as well as talk a bit about ALS. Following the video, I’ll discuss a few other exercises I tried but did not video tape, some additional facts about ALS, and options for donating if you’re inclined to do so.

Other Empathetic Experiences

This isn’t one of the beef carnitas I had last night. I happened to have a picture on my computer from last year since I’m eventually planning on sharing the recipe.

After the video, I tried another one of Bo’s exercises. I took a long look at my next meal, which happened to be beef carnitas. She said to appreciate the aroma. I’d been smelling the beef cook in the crock pot all day, but I took another sniff and smelled the various spices (cumin, smoked paprika, etc.). She said to imagine not being able to taste that food or any other for the rest of my life. The ALSA mentions that taste is not affected by ALS, but since chewing and swallowing are, I suspect Bo may have been referring to the fact that someone with ALS might eventually not be able to eat.

Truth be told, these were not the best carnitas I’ve made (I realized we didn’t have chili powder, so I’d left it out), but they were still pretty good, and I’ll have the chance to try again some time and to have many other foods besides. Although my Grandpa P. didn’t have ALS, he was fed through a tube as far back as I can remember, and I used to try  to avoid eating in front of him because I thought I would feel bad if I couldn’t eat food and I had to see and smell people eating in front of me. Trying this exercise reminded me of that and gave me a renewed appreciation for being able to enjoy a variety of foods and for the struggle those who are not able to enjoy it must go through.

Another challenge which I tried last night was to go to bed and stay in one position for as long as I could. This is was actually one of the challenges that hit me the hardest. I noticed the position I was in wasn’t comfortable on my arm or wrist but tried not to do anything about it. As I was focused on not moving, my ear started to itch, and then my foot. I tried not to touch either. Then I started to get warm under my comforter. I resolved not to move it. After I thought I had held out for several minutes, I turned over and looked at the clock, moving my blanket off me. I had only made it a few minutes. I never thought I would feel blessed to have the ability to shift my own body into a more comfortable position, to scratch my own itches, and to move my comforter off me if I was too warm (or pull it back on if I got too cold), but I was because I realized someone with ALS might not be able to do any of those things on his or her own.

Today before posting this, I decided to tackle one more experience, sitting still for 15 minutes without moving anything but my eyes. I am a fidgeter to begin with and easily distracted, so I already knew this was going to be a challenge. I tried to make it somewhat easier on myself and put my headphones on with a play list. According to ASLA, hearing is not affected by ALS, so I imagine if I had ALS music would be something I’d find solace in. I sat down in my desk chair and started watching the clock on my computer. I started at 9:42 with the intention to stop at 9:57. About 4 minutes in, I realized I’d moved my toes without thinking about it, and it happened again a few minutes later.

Imagine this is all you can move…

After that, I deliberately tried to keep them still and could feel a surge like they needed to move but I held firm. My back hurt and I couldn’t stretch it. I heard my husband moving around in the room behind me and couldn’t turn around to see what he was doing. I started thinking about the people who live life this way and got teary eyed and could not wipe it away. My throat got a bit dry and I could not grab a drink of water on my own. A song came on I didn’t particularly feel like listening to, but I couldn’t change it. I was tracking the time on my computer and the screen blacked out with about 7 minutes to go. I had kind of settled in so I decided to keep going and estimate based on the song when I should move. I ended up doing so a minute too early, so I added another minute to the time. My dogs chose that time to start growling and barking at some noise. It felt like a long time before the minute ended and I could get up to do something about it. It was hard to sit still for 15 minutes. I can only imagine how hard it would be for that to be my only life.

Bo had a few more suggestions. One requires ankle weights which I don’t have, another a wheelchair or scooter which I haven’t seen in the stores here, and another to get someone to help you dress and brush teeth which I haven’t been able to talk my husband into doing. To see the original suggestions, check out Bo’s article. I hope you’ll try at least one but encourage you to try several as they really do help you to have a deeper appreciation for what those with ALS are going through, especially bearing in mind that it’s all so much briefer and on a much smaller scale than living with ALS.

ALS and Veterans

Although I didn’t mention it in the video, I wanted to share some more information about ALS that is particularly relevant to the military community. According to the ALSA, veterans have twice the risk of the general population of developing ALS, particularly those who served in the Gulf War. I wondered if this higher link might have something to do with TBI and found this set of articles from Neurology Reviews. [Note:You may be prompted to make an account to read those articles. Registration is free.] One indicates that military veterans and athletes have higher rates of ALS than the general population and that this may be due to repetitive head trauma, but that these cases might actually represent a motor neuron disease similar to ALS but separate from it. The rebuttal article mentions that there is evidence that head trauma can trigger ALS and that the abnormal TDP-43 protein in the individuals mentioned in the previous article is typical to ALS, suggesting that’s what they have.

If You Want to Donate
I flubbed on the donation option in my video and said “ALS Foundation” instead of “ALS Association”. (I don’t feel too bad since Chris Kennedy did the same thing, but I want you to know the proper name.) You can find them here and learn more about what they do here. They also allow one to donate by paypal, which I found handy.

Another option I found out about later and also donated to is the ALS Therapy Development Institute (ALSTDI), which is a nonprofit biotechnology organization that conducts transparent and collaborative research projects. You can find out more about their research here. If you’d like to donate, you can do so here. Other options you might consider include Project A.L.S. and the Muscular Dystrophy Association (MDA), which also supports the fight against ALS.

If you want to see how these or any other charities allocate their funds, check out Charity Navigator which also provides accountability and transparency, financial, and overall ratings, each out of 100, for a variety of charities. All of the ones listed specifically for ALS were rated at 100 for accountability and transparency. The MDA is rated at 96. Of the charities I listed, ALS TDI has the highest overall (97.31) and financial (96.2) ratings.

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2 Thoughts on “ALS Empathetic Experiences: a Supplement for or Alternative to the Ice Bucket Challenge

  1. I do have my problem with this challenge as well. As you mentioned, I do not think it is a good way to make donating money like like the least favorable option. I think a lot of people only participate because it looks like fun and not to raise any awareness. Also, I think it is not very responsible to basically waste a lot of water while there are places on earth where people do not have enough water to drink.

    • Glad I’m not the only one who doesn’t like that setup lol. I don’t really care if people only participate because it’s fun as long as they also learn something about ALS and/or donate, and I think the “fun” factor is probably most of why it’s caught on so well.

      I had considered the water waste aspect also, but my post was already one of the longest I’ve ever done without getting into that and I wasn’t sure if it was too long to hold people’s attention as it is. I have mostly seen people do the challenge on grass so I guess at least the grass is getting watered. Those who live close to a body of water might also do it there. And the former was a suggestion by the individual who wrote this article which is entirely about the California drought vs the Ice Bucket Challenge: http://www.bustle.com/articles/36821-the-ice-bucket-challenge-the-california-drought-arent-mixing-well

      Another article pointed out that the water waste isn’t actually that high, even though it’s an estimated 5 million gallons, because people usually only use a gallon bucket at most, and 5 gallons per minute goes down the drain when people shower. The director of the Soil and Water Conservation Society says that more water is wasted by people needlessly watering their lawns than taking the challenge and he suggests channeling the concern away from the challenge and toward fixing leaking faucets. http://www.thewire.com/national/2014/08/the-california-drought-versus-the-ice-bucket-challenge/378776/

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