What it is like to have a parent with MS, by Tori

Hi, my name is Tori. My mom has multiple sclerosis. I often have to help her do chores such as taking out the trash, doing dishes, etc. But have you ever wondered what it’s like to have a parent with MS?

It’s not easy. Having a parent with MS means being there for them and helping them out. You can get MS in almost any part of your body. Arms, legs, neck, you name it! My mom has a disability in her legs. I pray every night that some day it will heal. Some day they will have a cure for MS.

MS happens when a cell in your body starts to attack the brain. Your brain sends signals to all the parts of your body. The cell(s) start to attack one of the signals. Eventually the body realizes it is attacking itself and stops. But it leaves a scar. This can happen to any part of your body, inside and out. But some day they will hopefully have a cure.

I often have to help my mom. I help her cook in the kitchen. I help her clean up. And this makes me happy. But sometimes I feel distressed. I feel sorry for her because she has a disability. And sometimes when she loses her balance, I help her up.

I always see her in a positive attitude. My mom still can, and likes to, cook, travel, go out with her friends, etc. I need her and she needs me. This is what it’s like to have a parent with MS.


  1. Susan Eckert

    Dear Tori,
    What a brave and thoughtful blog. I know how proud your Mom, Dad and Grandma Rego are of you. I am friends with Grandma Rego and she always beams when she speaks of you! Now I know why! Keep helping your Mom as best you can. She is so lucky to have you for a daughter. Hope to see you soon!

    Ms. Susan

  2. Ashley

    An excellent post – it highlights some of the hardships of the impact of MS on our loved ones, but love and hope shine through! X

  3. Gramma

    That’s Truly Tori! Her purity in writings are as genuine as yours, Jo. Spoken from the heart, and felt with compassion.

  4. Michele Valentine

    Tori, I have MS. My kids are all grown up now. My daughter Amanda was a great helper to me too while she was growing up. She cares so much for people that she takes care of infants as her job now. You are one great writer and I loved this contribution to the blog. You are blessed with an awesome Mom and your Mom is blessed with a wonderful daughter! Great job writing this! This must have made your Mom VERY proud!

  5. Cindy

    Tori, you are a valuable part of your mom’s journey. You are not alone either. I was diagnosed with MS when my girls were about your age. It was scary for them too. But they learned to understand that I had different needs than the other moms. Just smile & love your mom in the way only YOU can.

  6. Terri McBeth

    Tori, Excellent job sharing your insight of MS. Keep up the good work helping your mom. You both are an inspiration. I know Mom and Dad are very proud of you.

  7. Mary Weslow

    So very proud of Tori! She is already compassionate and kind at such a young age! What special qualities to carry into adulthood… She is a wonderful example to her brother Will.
    We love all the Johnsons and pray for their strength and courage; God bless especially Tori!

  8. Laurie Cruz

    I absolutely love this post. Baby girl this is completely from your heart. I’m 43 and I live w MS as do my husband n children. I know it’s a long hard road, but Mommy is always greatful because she knows your feelings. Stay positive, keep focused, things will change one day. Just know that her love for you is never ending, n she’ll always b grateful. Nice writing sweetheart! Keep strong 4 mom! ?

  9. Tori, this was very touching and I was able to imagine just for a second what it might be like to live in your shoes. It is a unique and special piece of writing. Keep at it. A very useful method of expressing feelings is through writing. I have never been that great at it; maybe some day. There are of course good days and bad days, but remember even in the bad days just a smile is enough to brighten up those around you (especially your Mom). She loves any little piece of assistance you can provide. “I need her and she needs me” – a very profound statement ! – Uncle Ry

  10. Jennifer

    Tori, I am writing a children’s books about having a parent with MS. Would you be interested in reading/critiquing the manuscript?

  11. Carole

    Thank you for sharing your perspective Tori! Your mom is lucky to have you. Xoxo

    Lila’s mom

  12. Jodi

    From Tori: Thank you Miss Carole! I enjoyed writing this article and I thought people would enjoy reading it.

  13. Jodi

    From Tori: Hello Jennifer, I would be happy to do that! I really enjoyed writing this article and I would be happy to read your story. Thank you.

  14. Jodi

    From Tori: Thank you, I really enjoy writing and I hope this article helps other kids who have a parent with MS.

  15. Jodi

    From Tori: Thank you. My mom is also 43! I wanted to write this article to help kids who also have a parent with MS.

  16. Jodi

    From Tori: Thank you, my mom likes to travel a lot of places with her yellow mobility scooter. That makes me happy because we can do things as a family. I really enjoyed writing this article.

  17. Young person’s guide to MS – this book was written with the help of 10-16 year olds who know what it is like to have a parent with MS. They share their experiences, worries and emotions about living with MS in their family.

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