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Growing Up MS

Growing up, I was already a pretty big advocate for those battling multiple sclerosis. I routinely participated in whatever I could to help raise money for research. I also read up and learned what I could about the disease (and back then, there really wasn’t a lot of information). I did all of this because my grandfather, disabled because of the disease, started living with us when I was a young child. My curious mind always wanted to know more about why Granddad was the way he was.  I also wanted to do whatever I could to help him. So, it was a surreal moment, when years later, I too got diagnosed with the disease.

Lessons learned

I’ve mentioned my grandfather in previous writings, I’ve mentioned how I watched him slowly go from using a cane, to a wheelchair, to being completely bedridden, to eventually passing from complications with the disease (all while living under the same roof as me). The experience gave me a unique perspective on the disease, way before I had my first symptom. It’s also made me a huge proponent of disease modifying medications, because I’ve seen the very worst of the disease first hand, I’ve seen what can happen without medication.  While everyone with MS is unique and has a different course, I’ve seen the worst case scenario. Everyone needs to find out what works for them.  

However, I’ve seen what trying to fight the disease with bee venom therapy and only changes to diet can accomplish in an aggressive case of this disease, and it’s not pretty.  It’s a huge reason why I won’t switch from Tysabri unless I absolutely have to. The rare chance of PML is not nearly as scary, to me, as what I’ve seen Multiple Sclerosis do. In short, seeing my grandfather’s decline first hand has ensured that I’ll do whatever I can to ward off my disease progression.

Growing up with my grandfather also allowed me to experience the caregiver side of life. Something that a lot of MS patients, thankfully, don’t get to experience. That has certainly affected my life with MS and the way I treat those that help me. It’s given me an amazing appreciation for those that help others in their time of need. Those that put off parts of their own life to tend to others are the best people this world has to offer. Being a caregiver and then needing one has truly helped me appreciate humanity and the good in people. For that, I am thankful.

Me too

Suddenly going from raising awareness and funding for a disease to actually having said disease is pretty surreal. Particularly because, at the time, we were all very much assured that it was not genetic, that it is not inherited (and as of today, it is still not considered an inherited disease. It does not pass from generation to generation. That said, there is evidence of a genetic risk. So while the disease may not pass down, the risk of getting the disease does. That risk increases when coupled with other factors, like environment.  This is an area that is still very much being studied).

As people who’d been around MS and studied up on it, my family and I were pretty sure of what my initial symptoms probably were, even though the doctors were still very unsure (they were very dismissive of the fact that it could be MS because grandfather also had the disease, almost looking away from MS as the cause because my grandfather had it, and from what they knew at the time, that would have just been too much of a coincidence). When I was finally diagnosed, it was bizarre. I almost felt like I was watching myself in a movie. Like what? The kid that once took top prize in the MS Readathon ends up getting MS? No way, that’s almost too cliche!

The more I thought about it though, it almost felt like it was supposed to happen. Cliche as it may have seemed, that helped me accept the challenge that was ahead of me much more easily than it I hadn’t had the experience of living with my grandfather. It sounds weird, but I almost felt like I had been preparing for it my whole life. My grandfather’s struggles with MS paved the way for mine. Yes, I had seen the very worst of it, but I also did a lot of reading and learning about the advances. I knew I had a better chance than my grandfather (and this was near 20 years ago at this point). I also knew I was a fighter and came from a family of fighters, I knew I’d be fine. Life still hasn’t gone as well as maybe I had hoped, but I can say with confidence that it would have gone a lot worse had I not grown up around MS. I didn’t know it at the time, but living with my grandfather as he fought the disease improved my ability to fight it.

Thankful

I think it’s important for those who fight this disease and have children of their own, to know that, even if I hadn’t gotten MS, being around my grandfather’s battle with it strengthened me as a person. I know some folks worry about what their children will see and how it might affect them. In my case, it taught me a lot, including showing me the goodness, humanity, and courage of people. It helped prepare me for life, and would have even if I didn’t get MS. It taught me how to be strong and yet taught me that it’s OK to not always be strong. It helped shape my life and teach me lessons I might have learned in much harder ways down the line. In short, I am better because I grew up with MS.

Thanks for reading!

Devin

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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

  • Mwhite
    5 months ago

    Wonderful article. I too had a family member, my uncle, that I watched decline from wheelchair to being bedridden. I still didn’t understand much about MS and so was totally surprised when my symptoms led to my diagnosis of MS. We were always told my uncle’s MS was caused by exposure to a chemical in the war. He was military and the army covered him the rest of his life.

  • Devin Garlit moderator author
    5 months ago

    Thanks so much for sharing @Mwhite, appreciated

  • Irishmar8
    11 months ago

    My Mom was diagnosed with MS in 1964, i was7 she was 46. Living near Chicago I was diagnosed in2004 I was 46. I have my adult daughters taking vitamin D supplements in case it is a preventative source. My mom had nothing to help, I do. I think of her always now, how strong she really was. I was just a young girl, she was all I knew as a mom. She had Progressed like your grandfather. If I could live life over I would be different with her. I kept myself at a distance I guess as a defense mechanism. Had 3 older brothers one younger. Dad a Chicago cop. Mom died at home 1987, my one brother took excellent care of her. Bedridden last 15trs of live, couldn’t communicate, feeding tube legally blind. I don’t want to be like that. She missed out on a lot I wish I could give her healthy times back. I feel guilty

  • Devin Garlit moderator author
    10 months ago

    I’m so sorry to hear that Irishmar8, I obviously understand. It’s difficult to think about. I do try to think though, about how happy my grandfather would be at how I am doing compared to him. I like to think that he knew people like him had to come first, before I could be in the condition I am. I think about how people getting diagnosed today and how they will likely have less disability than I do. The same scenario as my grandfather and I. While it’d be easy to be upset and think about how much better they have it, and how many options for treatment they have, I try to look at it from a different perspective, that my struggles have ultimately helped them, that my experiences have helped the medical community improve. It makes the problems I have much more tolerable and I like to think my grandfather thought the same way, especially after I was diagnosed. I still would do anything to go back in time to make it better though.

  • Shelby Comito moderator
    11 months ago

    Hi @irishmar8, thank you so much for sharing some of your story with us. Your mom sounds like such a strong woman – just like you! I can understand your feelings of guilt and want you to know you are certainly not alone in feeling this way. I can’t even imagine how difficult and confusing it must have been for you as a little girl to try and understand what your mother was going through. And now that you do understand on a deeply personal level, I can imagine that must be so hard. Thank you again for reaching out and please continue to do so any time. We’re so grateful to have you in our community! Warmest wishes, Shelby, MultipleSclerosis.net

  • Irishmar8
    10 months ago

    Thanks Shelby, I don’t often even talk about my life and knowledge of MS living around it and with it. I am not in any group. I’m just going to start seeing a therapist – behavioral and for anxiety. Hopefully I’ll deal my guilt and my motivation

  • Shelby Comito moderator
    10 months ago

    I understand – it must be very difficult to find the right words or the right people who will understand. I’m so glad you felt comfortable sharing a little bit of your story here and appreciate you taking the time to do so. Many members of our community have found counseling and therapy as helpful tools, and I hope the same is true for you. Please keep us posted on how you’re doing and feel free to reach out ANY time! Warmest wishes, Shelby, MultipleSclerosis.net Team Member

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