L. Marins

I am Lucas Marins, Brazilian, 31 years old. My grandfather died with ataxia SCA3, my aunt is completely paralyzed already, my mother is 64 years old and has SCA3, suffering with no balance, severe difficult to Walk, insomnias, slight difficult in speaking and other symptoms. Myself, I was diagnosed with SCA3 about 5 months ago and this changed my entire life. I think I can already feel some of the symptoms, but I am not totally sure.

Anyways, I am deeply upset, cause I lived my life as an adventurer, I love swimming, Running, Doing trails, Backpacking, traveling, going in the woods and jungles; this was the meaning of my entire life, the thing I love the most to do, this describes myself better than anything else, if you ask anybody that have ever known me who is Lucas, they’re going to say he is an adventurer in love with the world nature and landscapes. I just cannot imagine myself different from that and discovering this SCA3 is literally being a deep challenge in my life, I do not know how to mentally deal with that. I am working even harder than I ever worked, almost non stop to provide my family, my wife and to secure a future for them, cause soon I may not be able to work as I do anymore. Loads of things in my mind, everyday, it has truly being a huge challenge.

I am sharing just a small bit of my story here to maybe help others in the same situation, somehow. I am hoping deeply for a cure to be discovered and ready for use as soon as possible. I would like to thank the team who created and keep this website, it is a slight relief at least talk about that, cause I do not have anyone else in this world to say those words. My parents expect me to be strong and never fall apart, anyways I never intended to do the opposite of that, I need to keep strong to not make them sad like any parents would be by seeing their oldest son depressive or sad about such a thing. I am just working harder than ever and trying not to think about this. Thank you, everyone again, hope you are fine.

When Were You Diagnosed? Which Type (If Known)?

I do not know exactly, but it has been more than 20 years.

How Has Ataxia Impacted Your Life?

Not suffering the most disabling symptoms, but mentally I’m kinda wrecked and deeply sad.

What is One Thing You’d Like the People to Know About Ataxia?

When we are in more advanced stages, you literally need somebody to everything in your life. My grandfather needed help even to eat.

Share Your Advice – How Can Others Support Someone with Ataxia?

Try give the person some reasonable level of independence, but help as you can, do not complain if it is from the bottom of your heart, be always kind, you have no idea of what this person is passing through, some few hours or minutes of your day may not be big difference for you, but for people with ataxia it may be everything.

Disclaimer: The views and opinions expressed in this story are those of the individual member and do not necessarily reflect the views of the National Ataxia Foundation (NAF). Any medical information shared in this story is based on personal experience and has not been reviewed or endorsed by NAF or a medical professional. Always consult with your own physician or qualified healthcare provider before making any changes to your care or treatment plan.

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