How Huntington’s Affects My View of Christmas

Alexus Jones avatar

by Alexus Jones |

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Every family, regardless of religion or background, has at least one time of year that is special to them. A time when they get together and celebrate, repeating rituals that have been passed down through the generations.

For my family, that time is Christmas. As a child, it meant going to Christmas Eve service and singing in the children’s choir. It meant waking up on Christmas Day and opening the presents that my mother had not given to me early. It meant spending time with my mother, uncles, grandmother, and grandfather.

My mom fondly recalls the Christmas she got me my Nintendo Wii. The popular game system was selling out fast and she went from store to store searching for one. When I opened it Christmas morning, she knew her hard work had paid off. Mom, my uncles, and I spent the rest of the day in a heated Wii Sports competition.

Now Christmas means waking up at 11 a.m. and spending the day with my mother, my father, and my dog. It’s a time to recharge after a long year. The Christmases of my childhood feel like they belonged to another person. Thanks to Huntington’s, my grandfather is no longer with us. The other members of my family live in different states.

Don’t get me wrong, I love Christmas with my parents. There’s nothing I want to change about our tradition of doing nothing. But I would give anything to go back to a Christmas when my grandfather was alive, even for a brief moment. My last Christmas with him in Florida was more than 10 years ago, and I only remember bits and pieces. I want to be able to see him as I am now, and to remember what those days were like.

I worry about the day that I have that same feeling about my current Christmas traditions. With my mother’s diagnosis of Huntington’s, I know that our Christmas Days together are numbered — more so when I consider the mental decline associated with the disease. I don’t want to know what it would be like to spend Christmas without my mom.

That’s why all I want for Christmas is a cure. Maybe it won’t be this year, but I hope Santa gets it to me soon.


Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.


Eric avatar


Hi Alexus, I appreciate your articles and perspecitive and you write very well (I have read most if not all of them) but is it possible to be less negative when writing them? At least sometimes as we all need to deal with the negative issues as well.

There are always two sides to every coin. I know that since I have found out about my own number that life is very different and it can be hard sometimes to think positively. I try very hard to stay strong but it is not easy. I am currently trying to live my life the best it can be and spend as much time as I can with my Mom before all of her windows close completely. This has led me to do a better job on ALL of my relationships and spend more time with everyone.

With my Mom specifically I moved away from home and would have not seen her much like any other mid 20's kid to their parents. But now I force myself to spend several months (yes months about 2.5) with her annually which I would never have done if I just moved away and started my family, so there are many good things that come from knowing that things are happening as well. My partner works in Geriatrics for 10 years and has only come across one other person with HD and she always tells me to live for today and take advantage of EVERY opportunity to have a good experience , enjoy a laugh etc. I have had sooo many more good positive experiences with my Mom because of HD and my fiancé's advice. As we all know it is not something that gets better.

I know it can be difficult but there is ALWAYs a positive side to everything. And always a negative it just depends how you choose to view it.



Alexus Jones avatar

Alexus Jones

Hi Eric,

I appreciate that you take the time to follow and read my articles. I understand where you are coming from. I am happy that you are able to take that time with your mother and that you have had good experiences because of the people in your life. However, I haven't come to that level of acceptance, and that's also okay. Yes, my articles are oftentimes dark, but that's because currently, that is where I am. I try and write as honestly and truthfully as I can, and I'm sorry if what I am writing is not always what you're looking for, but it's what I'm feeling at that time. As I mentioned in a previous article, writing is very cathartic for me, it's how I can analyze how Huntington's has affected my life in ways that I have yet to deal with. I do try and put a hopeful spin at the end of all of my articles, but even that sometimes is hard for me. I wish I could tell you when I will get to the same level of acceptance that you are at, but I don't know.

Thank you again for your thoughts,

Lynn Lindsay avatar

Lynn Lindsay

Thank you for sharing your
Story. My husband is gone
as well and now this demon
has reared its head again.
My daughter had it. At this
time of year I really don’t
know how much she does
remember. I too pray every
day for a treatment. This is
a horrible illness with no
treatment. Hopefully we can
have a Christmas miracle.

Merry Christmas!

Alexus Jones avatar

Alexus Jones

Merry Belated Christmas! I really hope for a treatment or a cure, for my family as well as the rest with this horrible disease.

Pauline Patrick avatar

Pauline Patrick

I would like to suggest providing
care giver support earlier for families. Some times medications started earlier could be helpful!


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