I am grateful for all the amazing work being done in the search for treatments, cures, and prevention for ALS. I have been going to Massachusetts twice a year since 2018 to participate in two studies: one for ALS and one for FTD. Being in contact with the amazing neurologists working on these studies gives me hope.

I think for now, I will focus on friendships and taking care of myself.

You are very sweet. Your response was encouraging. I really appreciate it.

Alexi

We have so much in common!  I lost my grandfather to ALS when he was 60, my father at age 69, 2 Aunts in thier 70s, 1 cousin in her early 5os (she lived 16 years) and my last cousin, Bruce passed away a about a year and a half ago at age 56.  I was diagnosed last December at age 55.  I even had another cousin pass at age 24 and one in her 30s.  family My has the SOD1 mutation and clearly for us, there is not likely age of onset.

As far as dating I have to admit I have the same thoughts as you.  It seems so unfair to put someone through loving a pALS doesn’t it?  However, I honestly agree with your friends although it is still difficult to reconcile my own thinking with what I think is “right.”  I haven’t dated a lot since I got divorced, and especially not much the past 6 months.  However, and this is my personal opinion, people have the right to decide if they want to be in a relationship or not with someone with a predisposition to ALS.  Also, just because it runs in your does not guarantee you will get it. So much is still unknown about ALS.

One more BIG plug for dating and not denying yourself a loving relationship — here it is— my ever growing optimism! Alexi, they recently came out with a treatment for the SOD1 mutation (Tofersen/QALSody) that they believe will prevent the onset of ALS, and halt the progression of ALS by lowering Neurofilament light chains in the body.  To my understanding the treatment, QALSody, wraps itself around the miscoded gene and provides the correct instructions for the body. The misfolded protein is no longer produced and that is detected by the neurofilament light chain levels in blood and spinal fluid.   That’s a very simplistic explanation.  I’m not a doctor, or medical researcher. I’m a school psychologist.  I’ve been volunteering for medical research for genetic ALS since 2010. I ask my doctors lots of questions and I read, and read and read.  I also watch a lot of the ALS research symposiums on youtube. So, I have no professional credentials and I may not have the science exactly right.  I do know (from asking lots of questions) they are researching using the same technology and trying to develop a similar treatment for C9orf mutations.

So, I would hate to see you put off a good relationship when there could be a treatment around the corner.   Or, you may be the outlier and never have ALS onset. Alexi – if you ever want to talk or message just PM me.  If I can be supportive or helpful in anyway, I’ll be there for you!

On a side note, I should take my own advice!!  Also, today I had my second QALSody treatment!! Yay me! Yay ALS research!!  We deserve to love and be loved regardless of our genetic make up.  I hope this was helpful or at least encouraging.

Amanda

I am a 53-year-old asymptomatic carrier of the c9orf72 variant. I have been divorced since 2006, about a year and a half after my father died of ALS and FTD. He was only 60.

I found out in 2018 that I inherited the gene mutation. I haven’t been in a serious relationship since. I am extremely reluctant to get into a romantic relationship knowing what my future holds.

I know that the age of onset for my father, grandfather and aunt are not supposed to have any bearing on when it happens to me, but I am just a little more than two years from the age of onset for my father. It’s scary. My aunt died at 57 and my father at 60. My grandfather was 79 when he died.

Given this, plus other issues I face, I feel it would be greatly unfair for me to get involved in a romantic relationship with someone. My therapist and friends have encouraged me to be open to dating. They say I shouldn’t make that decision for someone else. But most people have no concept of the horrors of ALS and frontotemporal dementia.

What do you all think?

Alexi

Thank you for your comments.  They were needed today.

art

I appreciated reading your posts as lately I have been especially sad, and feeling hopeless. My husband is entering his 6th year with bulbar onset. Since a year ago he is quadriplegic and he is total care. I braced myself for the physical demands, and with some nursing skills, it is manageable. What I didn’t see coming was the onslaught of fear and sadness that can overcome you and lead to emotional fragility. I’m hopeful that soon he will have a head mouse and can, once  again,  use his speech generating device. I have so missed his wit, humor, and comforting words. Something more than a word or two spelled  out on a keyboard will be be so welcome. In the meantime, I will take to heart your thoughts and ideas — listen to a song or two. I need to play a few of our favorites, mostly Johnny Mathis. Once upon a time we had a dance or two every night to Mathis.

Thank you for letting me say a few words.

Heidi,
Your ‘Smithing’ skills are also commendable – It is always rewarding to tell a good story, especially from the heart. Like you, it is currently my voice and my therapy. Linda did not mind your comment – I share it all with her.

I send my memoir stories from an online program I write through. It will be completed and published when I am gone. So far, I have about twenty stories, mostly about my present journey and thoughts on what I have learned. I include some stories of growing up on our Minnesota/Iowa farm and rural school life during the 1950s and 60s. I send it out to about seventy people when I write a chapter. I usually provide a link to a song that enhances my writing.

If either of you would like to read them (for that matter, anyone on this forum), send me a private message with your email, and I will include you on the distribution list.
Len