Thoughts and ideasPosted by Amanda on February 17, 2021 at 5:55 pm
When it comes to ALS, there are so many “sensitive topics” that are difficult to approach. However, I hate the thought of anyone dealing with ALS stress alone, so lets start a conversation!
How has ALS impacted your relationships especially marriages or long-term committed couples? Are you now a caregiver or a care receiver? Was there some role reversals in your home with the diagnoses? Do you have advice or experiences you can share with others who are married or in a serious relationship that are also impacted by ALS?
MemberFebruary 17, 2021 at 7:52 pm
Hi Amanda (et al) I have some thots on your questions & information. I am “early” into this strange new part of life where I am slowly becoming limited in a few areas and am not yet actually diagnosed with ALS but it remains in the “running,” so I should not have much yet to offer here, but I do have a perspective which may be a bit unique. I am both, a caregiver & starting the journey of a care receiver. My husband of 54 yrs has been a high level (T-4-5) paraplegic for 57 years and altho mostly independent until 5 yrs ago, has become more dependent physically, requiring hoyer lift & electric chair, assist to turn etc. My “minor” limitations (zipping, buttoning, opening, cutting etc) have turned our tables a bit. I think my increasing need has allowed him a new sense of purpose & both of us a greater appreciation of each others understanding, help & opportunities to care. We are having to look more realistically into the future.
I had a brand new experience yesterday, that Ive not felt in our marriage before. I became so frustrated sitting in the drivers seat, waiting for the lift to finish bringing David into the van, attempting to place my hearing aid into my right ear with the right hand/fingers not doing what I needed them to do, speaking patience to myself, and finally reaching my limit,….I threw my hearing aides against the dash as hard as I could, then broke down into sobs. Such simple little things built up into an eruption which felt soooo needed. My husband, had compassion, I even had compassion and somehow we both shared in an unspoken understanding & acceptance & yes, love. Sounds so trivial but I feel stronger knowing we experienced it together and it was real. Hope this makes sense to others. Thanks!
MemberFebruary 17, 2021 at 8:09 pm
Wow Nancy, that is so powerful. I’m struggling to find words. What a beautiful and strong love the two of you share.
MemberFebruary 17, 2021 at 8:11 pm
Bravo !! Your words speak volumes.
MemberFebruary 18, 2021 at 8:28 am
Nancy, my heart goes out to you, being a caregiver for so many years for your husband. You are a caring, dedicated person, and I can’t imagine how difficult it must be to continue taking care of what he needs, while you have your own difficulties now. My life as a caregiver hasn’t nearly been as challenging as yours. For over 30+ years, I was the primary caregiver for our 3 children who are mentally and physically disabled. My husband was the only one working, as my “job” was full time in itself. Our children are now 32, 32, and 30, and just 3 years ago they were placed in a medical home. It was such a great blessing, as I had begun to struggle physically to care for their significant and increasing needs. Thankfully, my health was generally good, and no sign of ALS back then. I am so very grateful every single day, that they are taken care of, and are safe. Being that I am now dependent completely on a walker or a wheelchair, and can no longer drive, I simply would not have been able to care for them, if my symptoms began back then. A very big part of me feels sad for my husband now, as he finally could feel life was a bit “normal”, not having to help with the caregiving, and now he is my caregiver. He has taken it so well, which I am incredibly grateful for. What is so helpful is that we are very used to having modifications in our home and limitations in every aspect of our daily life. I believe that our years of being caregivers to our children has helped us tremendously in our relationship now, as my abilities lessen. My husband just takes what I need in stride, and I know it isn’t easy for him as he still works full time. We both are thankful for what we went through during those years past, and since we are both so used to facing uncertainty, that it helps us stay close, despite this devastating diagnosis.
MemberFebruary 18, 2021 at 1:18 pm
Carolyn, this community is such a blessing, isnt it; a place to connect with others, with similar challenges and life experiences that provide us with understanding and being understood, caring and receiving care. Thank you for sharing in that too!
MemberFebruary 22, 2021 at 10:13 am
Carolyn, you have had a lot to carry on your shoulders over the years. You are an amazing woman and your strength comes through in your post. You and your husband must share such a wonderful and loving bond. Thank you for sharing such private information. I’m sure your post will inspire others.
MemberFebruary 18, 2021 at 1:52 pm
I do agree with you Nancy. I am so grateful to have found this community to share with. It has helped me a great deal, and in ways that I haven’t found elsewhere. Your post was so inspiring, and absolutely wonderful to read!
MemberFebruary 19, 2021 at 11:30 am
Wow, Nancy & Carolyn. Such eloquent and thoughtful post. Thank you both.
MemberFebruary 20, 2021 at 5:13 am
Thanks David, your words are very kind 🙂
MemberJuly 25, 2023 at 10:58 pm
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?
MemberJuly 26, 2023 at 11:16 pm
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.
MemberJuly 30, 2023 at 12:12 am
Thank you, Amanda! Congrats on the QALSody treatment! That is very exciting.
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.
MemberJuly 27, 2023 at 7:52 pm
My husband and I have been together for 44 years. His career involved many moves to places where I couldn’t work. Consequently, we had a very traditional marriage where I stayed home with our two sons and handled the cooking, cleaning etc. Even after I was able to return to working outside the home I continued to take care of the day to day household tasks. I was diagnosed with limb onset ALS in January 2022 and am now in a wheelchair and use a hoyer lift for all transfers. My husband has taken on not only my care needs but all the household work as well. He has really embraced the cooking:). I bought him an air fryer for Christmas, and he loves experimenting with recipes. His housekeeping isn’t getting the same level of enthusiasm. 😕
Next month we will start having home care twice a week, which will give him some much deserved help. I certainly never expected to be in this situation, but I’m really not surprised my husband is doing such an amazing job handling things. We’ve always supported each other and enjoyed spending our time together. This disease will definitely test the strength of your relationships. I’m incredibly fortunate to to have him.
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