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Building A Better Life With LEGO And MS

Building a Better Life With LEGO and MS

Living with Multiple Sclerosis has taught me a lot. One important lesson I’ve learned over the years is that living with a disease like this requires a certain amount of creativity. You need to be able to think outside the box. Activities that once seemed mundane, like showering, become a challenge and require you to adapt and to approach life in new, often unexpected ways. As my disease progressed, and in particular, as my cognitive issues began to worsen, one of my doctors suggested an interesting therapy to me: start building with LEGOs. This is the story of how an important part of my childhood became an even more important part of my life as an adult battling Multiple Sclerosis.

Really, Doc?

I was in my mid-30s when my neurologist suggested this, so I was more than a little surprised. I grew up playing with LEGOs, and there is no doubt they played an important role in shaping my creativity. However, it had been years since I had built anything out of LEGOs. I confess, I even stifled a bit of a laugh when he mentioned it. My doctor went on to say that he had other patients who have had success by working with them on a frequent basis and that I should try it out. The hope was that not only would it help me improve cognitively, but also help with my hands, which are frequently numb or weak. I’ve always been a kid at heart, so I jumped at the chance to go play with some LEGOs.

First I did a little research, because that’s simply the kind of person I am, I like to gather a lot of information. I found out that LEGOs are very helpful to adults. Not only with people in my situation, but also with people who suffer from severe anxiety, as well as veterans with bad PTSD. Seemed like my doctor was definitely onto something here. I also found that there are a large number of adults without serious issues who build with LEGOs as their hobby, a way to express their creativity and relieve stress. As I’ve mentioned before, stress and MS don’t mix, so that was a pretty big selling point for me too.

In my research, I learned about a gentleman named Scott Crawford. He also battles MS and is a pretty amazing disability advocate. He lives in Jackson, Mississippi and has built a LEGO version of the entire city! It is an ideal version of the city, complete with sustainable energy sources, well-kept houses, bike lanes, and accessible streets and sidewalks. It’s a conceptualized vision of what Jackson can be, all made with little plastic bricks. It’s an inspiration and I highly recommend checking it out! Seeing all this and thinking of my own issues with MS, I couldn’t help but be amazed. At the time, I couldn’t fathom someone with MS, particularly the progressive version Scott has, building all of that I reached out to Scott and he was both encouraging and inspiring. So I decided to dive in and start building!

Building against my MS

I kept telling myself this would be fun, but I couldn’t help feeling a little scared. I’d already lost a lot because of my symptoms; if I couldn’t put together even the smallest of LEGO sets, I knew I’d be crushed. I remembered how the small tasks during my cognitive exams made me feel, so I worried I’d be setting myself up for the same disappointment. I wasn’t completely wrong about that. I had, and still have, some difficulty at times. It can be hard to follow instructions at times, it can be frustrating trying to put tiny bricks together with numb hands. However, when things start to come together in a set, it feels wonderful. Sets are broken up into sections so you can feel like you’ve gotten something done without finishing the whole thing. It may sound crazy, but it gives me a sense of accomplishment that I seldom get from anything else these days. That alone makes it worth it to me, building a LEGO set brightens my day.

That, of course, isn’t the only benefit I’ve gotten. I have no question it has helped my cognitive problems. My friends and family notice that difference as well. It’s extremely noticeable if I haven’t been building with LEGOs for a while, my cognitive issues seem considerably worse to others. I forget things, I have trouble conversing, and difficulty doing simple tasks. It’s gotten to the point where my roommate will ask me if I’ve built anything recently and suggest that I go work with my LEGOS every time I seem a bit “off”. In fact, I don’t even dare try to write anything like this without first building some. I feel like my numb hands have benefitted as well, if not improved, and I’ve at least learned how to adapt with them.

In addition to helping my cog fog and my hands, it is an immense stress reliever for me. LEGOs give me something to retreat to, something to occupy my mind when life is tough. Something else to focus on when the pain is too bad. When my stress level is up or I am being crushed by anxiety, I’ll turn to my little bricks and either work on a set designed by LEGO or I’ll conceptualize and build what LEGO fans call a MOC (short for My Own Creation). A MOC is something of you design and build on your own from start to finish. The whole process can really stimulate your creativity. When I’m not building a MOC, I work on a lot of Star Wars themed LEGO sets (they have many different themes, including an amazing Saturn V Rocket that really appealed to me). I’m a huge Star Wars fan, so being able to combine my passion for that with brick building has made all of this even more relaxing. Having an escape like this has been invaluable for me, it gives my brain and body a chance to recharge and not focus on the challenges of my disease, all while giving it the stimulation it needs to keep sharp.

A life-changing hobby

It sounds crazy to say that little plastic bricks have changed my life for the better, but it’s the truth. If I’ve learned anything from my time with MS, it’s to expect the unexpected, and LEGOs helping me fight my disease was certainly unexpected. Scott Crawford said this to me: “Building with LEGO is a lot like living a life with multiple sclerosis: creating something meaningful using fewer bricks than you once had. It requires creativity and a willingness to rebuild something new out of what you have left.” To me, that is such a perfect quote about life with MS. There is nothing that someone with MS can’t do, we may have things taken from us, but we can rebuild our lives a different way, we can adapt to the bricks we have.

Special thanks to Scott Crawford for letting me quote him and just generally being a hero to me. I discovered him and re-discovered LEGOs at a very tough time in my life and I can honestly say I am much better off now because of them. I’m not saying LEGOs will have a dramatic impact on everyone with the disease, but I hope to highlight that it’s important we consider everything when it comes to our treatment. Remember that help can come in unexpected places, for me that was little plastic bricks, it could be something else for you. Adapting is the name of the game with MS, I’d love to hear any “outside the box” things that have improved your life with MS. So, as always, please hit up the comments and let me know. The more we share, the better off we’ll all be!

Thanks so much for reading, 
Devin

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • KimmyK
    1 year ago

    Devin, I’ve been reading your articles for years and truly enjoy them all. More often than not they hit the nail on the head, offer a chuckle or an amen. Yesterday was a particularly tough day for no particular reason. I’ve been painting, but not as often as I should. It’s an escape for me. It’s very relaxing yet allows me to challenge my mind by working on perspective (depth), color, realism, hand/eye coordination and imagination. Once I sit down in my studio I’m transformed. Problem is, I think I spend too much time doing “stuff” around the house; probably trying to fill the void of my old life. Wow!! Lightbulb moment. I have a studio in my home but do laundry instead!!?? What am I thinking? My former self traveled the entire state all week & barely had time for laundry. OK, she also had 100x more energy but…

    I’m off to paint!
    Thanks, Devin. Big hugs, but not the MS kind.

  • Devin Garlit moderator author
    1 year ago

    Thanks so much for sharing KimmyK! Appreciate it! Now get in that studio! 🙂

  • kimmers
    1 year ago

    Being a LEGO employee and having MS and being an avid builder. I 100% agree with this blog post. Building with LEGO bricks has helped me immensely and I recommend it to those interested. If out of your price range look for loose brick on eBay or Garage sales but make sure to wash well as brick can get dirty and germy and with our medications that can be a bad mix. Happy building :).

  • Devin Garlit moderator author
    1 year ago

    Thanks so much kimmers! I’m so happy that a LEGO employee, and one with MS at that, has seen this! LEGO has absolutely made a huge and extremely positive impact on my life as an adult with MS.

  • 180ciae
    1 year ago

    Pretty cool idea. What about other hobbies, crafts? I see jigsaw puzzles mentioned, I enjoy doing those with family members, helps with cognition, hand coordination, and interaction with others. Some hobbies like quilting require following instructions, and also help with hand coordination. Just wondering if the Lego therapy is more beneficial, or if it’s a matter of preference, taste? The quilting and crafting hobbies, I was already doing before progression had really set in.

  • Devin Garlit moderator author
    1 year ago

    Thanks 180ciae! I’d say it’s really about personal taste. Finding something to engage with that will use your mind and your hands. I imagine there are many types of crafts that would do that!

  • kami.friebel
    1 year ago

    I found this very interesting. I’ve had hobbies in the past but over the last 2 years everytime I do any of them I have sezuire afterwards. I just wish Legos weren’t so exspensive. I’m on a very tight budget and can’t afford much after all my bills r paid. Maybe I can find a complete set of Legos at a garage sale or something. Thanks for sharing ur story and giving me an idea for a new hobby.

  • Devin Garlit moderator author
    1 year ago

    Thank you Kami! LEGO can be expensive. When possible I try to hit up places like goodwill and yard sales. I also buy a lot of used sets via eBay and bricklink.com.

  • messeeone
    1 year ago

    My “healthy” sister, who works hard to understand me and MS, just sent this to me. I think she was just wanting to make me smile because legos have been such a part of out lives: our little brother, my 2 boys, our 2 nephews, etc. But what happened, as so many of your articles do, Devin, is help me see more: that right now I need to find something to DO, CREATE, and COMPLETE. But only when I feel up to it. There’s the challenge, and why even volunteering has been out of reach for me.
    I was just encouraged by my neurologist to see a counselor to help with my newest issue–anxiety. I called to inquire about these services. The LPCs and LCSWs now charge about $150 an hour. With a burst of irony that hit me right in
    the gut, I remembered how, until about 10 years ago, I was that LPC, helping people with their anxiety issues! Of course, I had to give that all up due to MS. I keep thinking I’ve dealt with this but things like this come up and, well, no. I’m far from done with this loss! Anyway, thanks for reminding me that I need to continue to search for my own “legos!”

  • Devin Garlit moderator author
    1 year ago

    Thanbks so much bandmom! I hope your search goes well. It’s a definite challenge to find something to lose yourself in, but the rewards can be amazing. Good luck!

  • Debbie Gu3
    2 years ago

    I took this suggestion to heart and am trying it. For some reason I was never into building things when I was younger, but the idea of exercising my mind and fine motor skills appealed to me since I have MS and need to do this. I’m a person who pays close attention to detail, and LEGOs seemed like it might be fun.

    So, off to the LEGO store I went with my husband in tow and to drive home, I was fine going there. I looked at every set in the store, first trying to decide how difficult should it be and then what did I want to build that could be proudly displayed. What caught my eye was a green 2-door Mini Cooper, the smaller European version with steering wheel on the right. Now why this caught my eye is I drive a green 2-door Mini Cooper, but the set was “Expert” level with over 1,000 pieces. My husband came over and we talked about what level I should build since I had never played with LEGOs before. He said “Expert” is what I should get and off he went to another part of the store.

    I stood in front of that Mini Cooper set, which also had a hefty price tag of $99.00, for a good five minutes. I even looked at other sets again but was drawn back to that Mini Cooper, almost like it was calling me. I proudly picked up that green Mini Cooper LEGO set, went over to my husband to show him what I decided on, which of course he wasn’t surprised by, and went up to the cash register to pay.

    I have to tell you, it’s the best investment I’ve made because with there being so many parts I decided to put the pieces into color-coded plastic snack bags so it would be harder to lose them. So far so good, I haven’t lost any pieces and usually work on it in the evening for an hour or two. I’m really enjoying this and attention to detail is a good thing to have. I shared this idea and link to this article with other people. Thanks so much for a great idea.

  • Devin Garlit moderator author
    2 years ago

    Thank you Debbie Gu3! Very happy to hear that! I hope the build goes well!!!!

  • Chatty
    2 years ago

    What an AWESOME story!!!!! I never thought about Legos but it makes sense. Now my mind is going crazy on what other things would help? I’ll start taking my Grandchildrens toys and use them 🙂

  • Devin Garlit moderator author
    2 years ago

    Thanks so much Chatty!

  • deadbrainwalking
    2 years ago

    Ooh! This article is really fascinating and I thank you for it! I will soon be forwarding it on to a friend who’s recently had a minor stroke and she and I have been coming up with creative solutions to stimulate her brain and hands, (we’ve been working on some fine motor coordination challenges that are pretty fun and stimulating), But first I wanted to comment. 😉

    Back in my former life before MS I was a therapist. I used to use a lot of games for relaxation, concentration, and spatial and creative thinking. How I wish I’d thought about Legos. In addition to the many therapeutic benefits that different games may employ, fun and laughter alone is so beneficial. With our day to day struggles we can becime so serious, and our minds weigh heavy with practical thoughts about meds, dr’s appts, and various treatments, as well as with the emotional baggage of dealing with a chronic illness. Taking a break from all of that is reason alone to set aside time for fun activities. If those activities have other therapeutic benefits, all the better.

    One of the games I frequently employed for therapeutic benefit was Jenga. For people with mental health disorders they often battle both symptoms of their illnesses and also side effects from their medications, like difficulty concentrating and/or thinking clearly, and even sometimes medications caused minor tremors and tics. Unfortunately, those of us with MS may have similar issues, having meds treat one horrible symptom but worsening another, (particularly symptoms like cog fog and fatigue, but also tremors and tics may be among them).Jenga was really great at forcing cognitive practice, providing a platform for spatial and logical thinking. It also was a wonderful way to help people practice coordination and steady hand movement, and while doing all of these things it required sufficient concentration that for a time they’d forget about their struggles and day to day miseries and just focus on the game (which is mindfulness practice and I’ll explain later for those who don’t know of this). People would frequently discover that their tics and tremors were lessened to a degree, because they were so focused on their task, but that since the task was a game it didn’t create pressure and anxiety, so they didn’t think or realize that they were employing complex and difficult fine motor coordination. But if they happened to twitch or experience a hypnic jerk that knocked over the tower, it’s just a game and not the end of the world, and everyone could get a good laugh out of it.

    You seem a bit embarrassed by the sense of accomplishment that Legos bring, but it’s no small thing. Many of my clients, and those of us with MS, often took our skills for granted, then when we became ill and find ourselves incapable of utilizing or even performing those skills it’s quite disheartening. I had people tell me there’s no way they could play Jenga, but finding themselves not only playing, but even winning a game, the joy in the room could be so infectious. Sometimes we get so fixated on everything we can no longer do, and to find that we aren’t as devoid of skills as we’d been telling ourselves for months or years can shed tensions and negativity we didn’t even realize we’d been layering atop ourselves and carrying with us from task to task. It is important to know our limitations to avoid hurting ourselves, (it took me a long time and many burns to admit that I needed help pulling things out of the stove), but sometimes we find ourselves overly focused on “I can’t”s, and forget that there are still so many “I can”s.

    I employed many games, as well as projects that have become cliché in the world of mental health treatment, but that doesn’t make them any less therapeutic, such as macramé, that combine practicing and strengthening neurological skills with fun. Legos definitely fall into this category.

    As I mentioned before, that among other things these activities help us to practice mindfulness, which is being present in the moment. We aren’t thinking of a before, or what happens later, we are only focused on the task at hand. When skilled at mindfulness practice, it can be excellent for controlling thoughts, which is pretty important for any person, but definitely those in our position, as chronic illness can basically breed negative thought processes. Practicing mindfulness can help us to stop runaway thought processes that lead to anxiety and panic attacks, and is great for stopping and redirecting the negative and illogical thoughts that plague us when we become ill, such as “I’m worthless” and “I’ll never be useful to anyone”; common thoughts when people become disabled and that lead to self-fulfilling prophecies and depression.

    So, it seems your, and many others’, experiences with Legos is that they provide an analog mental structure that can keep thoughts orderly and on track and not stray into negative thinking. It’s quite a valuable resource, and I hope that your article is able to reach many folks who could greatly benefit from it. 😉

  • messeeone
    1 year ago

    Dear deadbrainwalking, I just responded to Devin’s insightful legos article and read your response. As a former LPC, I was just wondering if you are still working and practicing. I’ve been referred to counselors/thrapists for various reasons over the 24 years I’ve had MS and I just want to yell: “that used to be me!” Especially when I see what they charge per hr these days! Just curious about your situation. Thanks.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much deadbrainwalking! That was a wonderful and insightful comment that I hope everyone who comes here stops and reads!

  • Heidi K DeLaughter
    2 years ago

    Wonderful article as usual, Devin!
    Legos intimidate me, but I keep searching for something to call a hobby.
    I am so grateful they help you and others.
    It can be so depressing thinking about what you can’t do and this is a great reminder to focus on what we can do!

  • Devin Garlit moderator author
    2 years ago

    Thank you Heidi! I too was intimidate by LEGOs. As an adult, I felt like should be able to jump into the bigger more detailed sets. But, I swallowed some pride and started with smaller ones met for less experienced people and have been working my way!

  • NickK
    2 years ago

    Thanks Devin!

    I too loved LEGOs when I was a kid, and fought to make sure I kept my original sets (every castle and pirate set made before 1995). I’ve tried to start up again in fits and starts, but haven’t managed to build more than 1 or 2 sets. This inspires me to try again!

    I also began making chain maille creations shortly before my diagnosis, and my mentor/teacher in the craft has continued to push me to make new creations, because he’s aware that it has helped several people that have fought with cognitive issues. It looks like being creative and engaging in complex hobbies is a good tool!

    Now, to dig those LEGOs out of the attic…

  • Devin Garlit moderator author
    2 years ago

    Thanks Nick! Chain maille creations sound super interesting to me! Certainly though, no matter what it is, any creative and engaging hobby can be extremely beneficial to folks like us!

  • New to me
    2 years ago

    Great story and a great idea! I used to build RC airplanes out of balsa wood until my dexterity prevented me from obtaining the perfection I was used to, then while sitting in the hospital I spied a partially finished puzzle although frustrating at first I started to catch on and I have been using puzzles to help my hands and mind ever since! Kudos for sharing

  • Devin Garlit moderator author
    2 years ago

    Thank you New to me!

  • trloftus
    2 years ago

    I do it too! I broke out a box of Legos from when the kids were little, after speaking with an Occupational Therapist about building with Legos. It’s fun, but getting old fast.

  • RobWelsh
    2 years ago

    or just stack and unstack pennies

  • potter
    2 years ago

    Thank you for telling us about the Lego therapy, I work with clay and designs so much I usually don’t need Lego therapy. In the winter it is sometimes to cold to work in my studio so the Lego’s maybe just what I need. I have many construction sets stored away that we bought when my son was little. I have every type of set you can imagine. I knew there was a reason I hadn’t given them away yet. Potter

  • Devin Garlit moderator author
    2 years ago

    Thanks so much for reading and commenting Potter!

  • Tash611
    2 years ago

    I saw my MS Nurse this morning and we talked about ways to recharge and stimulate my brain with the cog fog… i’m fortunate to only have the numbness in my left hand/arm (i’m right handed) but this has inspired me to look at doing puzzles as a less expensive alternative, so thank you Devin!

  • Anonymouse
    2 years ago

    “In fact, I don’t even dare try to write anything like this without first building some.” Your quote here seems to fit in perfectly with the act of writing itself. Writers structure their essays, build on ideas, and more.

    I really enjoyed reading this article, Devin!

  • Devin Garlit moderator author
    2 years ago

    Thanks so much Anonymouse!

  • Diego
    2 years ago

    wow! This is serendipity at its best. Im getting a couple sets delivered today as Im reading your article. Ive been a Lego maniac since i was a kid. Now as an adult the love for Lego is even stronger. They have helped me in many ways to cope with MS. I have issues with lack of sensitivity in my hands so it just takes me longer now to complete sets. But thats ok because that means i have more time to enjoy the whole building process a lot longer. They help with with my focus and attention with detail. One wrong brick and you have to tear down and start over!

    Like you Im a Star Wars geek so those sets are my concentration. Right now Im getting a set from the The Force Awakens and the Yellow Submarine (just to mix things up a bit). So I will take the Lego advice your neurologist gave you and continue running with it.

  • Devin Garlit moderator author
    2 years ago

    Thanks Diego! That’s perfect timing! Like you, it takes me a bit long, but it does make it that much more enjoyable! That Yellow Submarine set looks great, I’ve considered that one myself!

  • Matt Allen G
    2 years ago

    Now I want to go to the Lego store in Downtown Disney

  • Devin Garlit moderator author
    2 years ago

    It’s definitely a dream of mine to go there some day!

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