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Devin and Aimee: What life is really like living with MS

In honor of MS Awareness month, my wife, Aimee, my dog, Ferdinand, and I talk about our life with multiple sclerosis. We’ve learned over time that MS can present some unique challenges for our family, so we wanted to share those with you.

How does MS have an impact on your day-to-day? Please share with us in the comments below!

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

  • Monk
    3 years ago

    Thank you so much for making this video and sharing a part of your lives with us. I felt like you guys had invited me into your home for an intimate conversation. I appreciate all the two of you do for the ms community.
    I hope you found the home that fits all your needs and dreams.

  • Devin Garlit moderator author
    3 years ago

    Thank you Christine.3! I’m very lucky that Aimee is so willing to open up about our lives as much as I am. I started writing a couple years back and told her that I’m always going to be me, I’m always going to try to tell it as it is, the good, the bad, and even the embarrassing. Not everyone would be happy about being so open, so I can’t thank her enough for not only allowing me to tell our stories, but also joining in with me!

  • Julie
    3 years ago

    I also worry about time. I can no longer “run’ up to the store for something. It takes time to put on shoes and get into the car.

    My husband of 30 years left when he couldn’t deal with my MS anymore (his words) so I have learned how to be independent. But then I started falling a lot and unable to do simple things like open a jar for cryin out loud!!

    My daughter and son in law came up with a deal a couple of years ago. We would find a multi-family home and purchase it. We have been in here for a year now and so far it’s been a win-win situation. I’m here when the grandkids get home and they are here if I need help with something.

    These are just a few things that I never dreamed would happen, even after I was diagnosed. Know this, even if you think it’s not going to let it impact your life, it will. Even if it’s just a small thing during the day, it’s going to have some effect.

    PS: I adore your wife for marrying you even with MS

  • Devin Garlit moderator author
    3 years ago

    Thank you Julie for watching and sharing your experiences. I think many of us with this disease can say, we wouldn’t have dreamed of this in a million years. I know this is most definitely not how I expected life to turn out. It does sound like you have an amazing situation living with your daughter now though!

    You are so right about small things having big impacts, that’s why I always get baffled when people so proudly proclaim that They have MS but MS doesn’t have them. for me, it’s part of my life, it effects me, doesn’t mean it’s absolutely terrible, but it’s my life. (btw, I wrote more on that here if you are interested: https://multiplesclerosis.net/living-with-ms/ms-ms-sort/)

  • potter
    3 years ago

    I was diagnosed when I was 55 so it has affected our retirement future. My husband hasn’t retired yet he is still working for good insurance so I can take my Tecfidera. He has started helping more around the house and we have to plan summer outings carefully and be able to cancel them at the last minute. We have started taking vacations in the spring to avoid the hot weather. In the winter the only place I go is to the grocery store and I go early to avoid sick people shopping. Becoming more and more a hermit. Potter

  • Devin Garlit moderator author
    3 years ago

    Thank you for watching potter. I completely understand what it’s like to become more and more of a hermit. It happens to me often. Sometimes you have to try to fight through it as best that you can! I’m very glad to hear your husband has been helping out, I’ve heard some terrible stories of spouses that don’t understand!

  • JanG6036
    3 years ago

    Fear of being in public and falling. Showers vs Tubs I have lost every thing except my car and my dog. I lost a man I was with of 12 years because of the attitude changes that happen and not being able to work
    Time is a big factor as well for me and I don’t do public events due to the fact of my immune system being so weak ( I get a cold and don’t know it and then I’m in the hospital for a day or more )

  • Devin Garlit moderator author
    3 years ago

    Sorry to hear JanG1360, I and many others here certainly sympathize with you. You a very much not alone in these problems.

  • Dimitri
    3 years ago

    Wow. Aimee knowingly entered into a relationship with MS? That’s incredible. She must be a strong person. Congrats to you guys.

    For me, the biggest impact MS has had on my life is probably slowing me down. Before I was able to function at a quick pace, but now everything takes twice as long; everything from showering to taking the dog for a walk. So I say time management is the biggest toll of MS.

  • Devin Garlit moderator author
    3 years ago

    Thanks Dimitri! Time management is a pretty big for me too. Things most certainly take much longer, if I can do them at all!

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