The High Cost of Writing About Huntington’s Disease

I understand completely your, and Jill's, position on sharing. Some time ago I started a blog called HD Lives because I wanted folks to know and understand that my son's life was so much more than his disease. I hoped that the blog would become a place where anyone who wanted could write about the life, or lives, of those who suffered or cared for someone with HD. Unfortunately, due to my own poor health, I was not able to keep up my end of the bargain. Bottom line: the articles you share are perfect examples for which HD Lives was created. I deeply appreciate your column and hope it will continue. However, as my own heart breaks every day for my son, I will completely understand should it end.

I just wanted to say a huge thanks to you and Jill for this column. I read it every week, and it gives me a sense of normalcy and helps me not to feel alone in this. My husband lost his mom to HD last year, and his twin brother has recently tested positive for the gene, so he has an extremely high likelihood of having it himself. He has decided not to get tested for now, as he doesn't want to be defined by his diagnosis, which I totally understand. Thanks again for sharing your lives with us - I know it must be hard at times.

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." - Philippians 4:6,7

Hallo Jill und Carlos,
Bitte macht weiter.
Letztes Jahr im Sommer hat mein Mann diese Diagnose erhalten.
Wir haben zusammen Zwillinge die jetzt 22 Jahre sind, beide sind nicht getestet.
Ich bin teilweise noch in Schockstarre weil ich Angst vor der Zukunft habe.
Diese Krankheit habe ich bis heute nicht akzeptiert, versuche mich aber damit zu arrangieren und für meine Familie stark zu sein. Wenn ich suche Berichte lese, fühle ich mich nicht allein. Es gibt hier keine Grenzen.
Für alle viel Gesundheit und für hoffen zusammen auf ein Wunder. Liebe Gruesse Marion

I have often commented on your columns. My grandmother had the disease, my dad had it, my sister, 6 years my senior, has been diagnosed with and tested positive for HD. I have not been tested, but have all the appropriate symptoms for the age of 52... I guess. My dad didn't talk about HD. I was to young to ask my grandmother. Now there is no one that knows about it. My sister says that the Huntington's specialist here in KC didn't realize jerking comes with the disease... okay.. and the only other specialist says "if you don't have the symptoms ALL the time, you don't have it yet." What kind of doctor is that???? What a lovely doctor that guy is; my sister was bawling by the time she left. We hear you and are learning from you, HOWEVER, if you don't feel like doing it anymore, please do what is best for you and yours!

Our daughter who is adopted was diagnosed with HD in Sept of 2020. This has been a very informative article for us
since no one in our family has HD. We do not have much history on the adopted family other than a member was
diagnosed with HD & past on. This is where I come to & fine articles & books to read for more information.
You have to do what is best for your family & mostly for Jill, I understand what she is saying.

Thank you from the bottom of my heart for all that you have shared with us. Your story has been honest and at times heartbreaking. I can understand your concern about continuing. Please do what is best for yourselves.

Dear Jill and Carlos,
Thank you for sharing your lives with me and with everyone else who reads your column. My mother had Huntington's disease, and of the 7 children, 2 of my sisters have passed away from HD and one of my brothers is in the later stages. I can only imagine how difficult it must be for both of you to feel the pressure of writing something meaningful each week and the emotional strength that it takes to do so. Please know that I and other readers feel a connection with what you write about and your column creates a community and helps those of us in this community to be better informed and feel less alone. You should do what you think is best for both of you but know that in writing so honestly and candidly, you are not only making people more knowledgable about Huntington's disease and how it affects entire families, but you are providing hope, comfort and kinship to people with Huntington's disease who may not have a community of their own. I wish you both the best and thank you for sharing your lives with us. Sincerely, Meghan Donaldson, Chief Executive Officer, Hereditary Disease Foundation

My daughter has been living with HD for at least 15 years now. I've been her caretaker, sharing this journey. She is presently in the 5th stage, so I write poetry to help me cope with our loss:

Ineffable
(for Chris and all who live with Huntington’s)

There is no reason
or understanding of consequence

No entreaties
to consider
another’s needs
No shift of focus

There is only my daughter
barreling her walker
through the house
to get what she wants
do what she wants

Like a gale wind
on its course toward tornado
no veering
or cajoling
away
from down pour
chaos
the screeching
torn up feelings
pain against
life in dishevel

Nothing changes
or distracts

No solution
only the right
to give oneself
Grace
for losing it
in the path of this disease.

Kay Renz

I really appreciate this column, like others, it helps to create a sense of "normalcy" around HD. My mom has HD and is a lot like Jill in that this is a slow to progress disease that has some jumps, bumps, and moments of "is this HD?". Please always choose to do whatever makes sense for you and your family. Mental health is critically important for both Jill and your family.

The wound is the place where the Light enters you. -Rumi

Dear Carlos and Jill, Thank you so much for all the sharing you have already done on your journey with Huntingtons.
It is encouraging for all who read and are in similar situations to you. I have a sister with Huntingtons and a mother who has passed away from it. I have found your articles warm and uplifting. You remind me so much of my father who cared so deeply for my mum and is now passed as well. As others have said do what is best for you and Jill of course. I think Jill has been so brave to help in the articles for so long. Love to you both.

Great piece, Carlos. Thank you to you and Jill both for continuously sharing your journey!!

I love your column. Your are making such a positive impact on the HD community. Thank you both for sharing your life with us <3. Greeting from France!