Forum Replies Created

Viewing 7 posts - 1 through 7 (of 7 total)
  • Author
  • #433846

    Hello everyone,

    I wanted to provide an update on our conversation. We did have a talk, and I feel like it was productive. There were a couple of concerns I had – 1) whether this condition would drastically shorten her lifespan (think 40s), which isn’t that far off; and 2) if the condition is degenerative.

    I asked these questions during our conversation, and she did mention that the doctors told her when she was younger that it’s not degenerative. They said if it were, she’d be gone by age 10! So, at least we know that part isn’t a concern.

    Regarding going to a neurologist for an expert opinion, I asked if she’d feel comfortable with us doing so (she hasn’t been to one since she was diagnosed as a child). Unfortunately, this caused some upset because she felt like I was questioning our relationship as in hinging our future on whether her condition is degenerative or shortens her lifespan drastically. My fear which I expressed was that I wouldn’t want to be widowed and with kids in my near future. To her credit, though, she did say that she would visit one after getting a referral from her primary care provider soon.

    I understand why you might be right, Anita – strong feelings are involved here! But ultimately, I’m trying to do the right thing for us both. We can see ourselves together just fine as things stand now… but knowing or ruling out any potential for further deterioration would bring me immense relief.


    Wow, anita, I just re-read your response multiple times and want to give you a hug. You’ve taken so much effort and cut right through the heart of the issue here… It’s incredible that you’ve voiced the very things I’ve been thinking of. I’m going to reply to some of your quotes here now, and thank you so much for the detailed reply!

    – can you indeed see yourself possibly spending the rest of your- or her life- in the role of a caregiver?

    This is one of my concerns, that I will end up as a caregiver, and while I could see myself doing it with joy within the context of marriage, I’ve come across too many stories where the caregiver spouse ends up harboring a lot of pent-up resentment, and I don’t think I’m of a unique, holier breed.


    “She struggles with fine motor control, balance…my girlfriend’s cerebellum ataxia… the brain damage is permanent“- does she currently struggle with significant fine motor control and balance dysfunction that will make it unsafe for a baby to be held by her?

    We believe so, yes. She frequently has jerky movements, and spills drinks or food all over the place. I did bring this up, while we were talking about the future, and she dismissed it saying she could wear a baby harness or something of that kind. As far as fine motor control, it does take her a while, bless her heart, but she can write slowly, and can even cook (operate a knife and other sharp instruments). As for balance, she cannot stand on one leg which is something I’ve noticed, and can’t run either.


    – if her medical condition deteriorates, the relationship will change, will it not, from that of a couple to that of a caregiver and a care-recipient?

    You are absolutely correct, and I know this is something that I shouldn’t feel bad bringing up because it is my responsibility right now to ensure if I am able to provide what she might potentially need as a care-recipient. Right now, I consider myself very independent, and value a partner who can accomplish tasks on their own too (not that we wouldn’t help each other!)


    Notice her response to your inquiry about her medical condition: she subtly accused you, did she not, of being calculating, insensitive.. cold-hearted for considering pros and cons. From attentively reading and re-reading your words, I see that your logical approach is wrapped in a very warm, empathetic heart.

    Is it possible that she is so cared of losing you, at times, that she has moments when she resorts- or is in the process of resorting- to guilt-tripping you as a way of keeping you, as in suggesting (not in an upfront, honest way), something like: if you leave me, Sam, it would mean that you are a bad person! ?

    You hit the nail on the head here, anita. She did ask me if that was a dealbreaker and I had to quickly dismiss the question as she became distressed. She told me that she could get cancer after we get married, would that mean I would leave her? I don’t think that’s quite the same as it’s not something that’s known beforehand.

    She also acknowledged that she has abandonment issues which is what you have divined in your reply here. She does not respond well to breakups or rejection.

    One other piece of info that I was able to glean was her annoyance at her exes who asked if her condition was genetic or if she could hold a baby. I can certainly understand why that would make her upset; and she said she appreciated me helping her out with tasks she struggles with (like getting heavier plates, or extra napkins, etc.) without probing too much into her condition. Perhaps she felt that this insinuated I would step into the role of a caregiver effortlessly, and as required if necessary?

    – what will your story be if you marry her: will it be a story of Honesty, Transparency and Deserved Trust, on your part, and on her part.. in sickness and in health?

    Look for clarity and answers in the story as it is now before you commit, if you do.

    This is a very sobering piece of advice, anita, and I appreciate it so very much. She hasn’t had many good experiences with romantic relationships and it makes sense why she started talking about a future together and a marriage very early into our dating journey. I know I’ve treated her well, as she ought to be treated, and flipside of that is, I deserve honesty and deserved trust like you say.


    Hey Tommy, I’m so sorry to hear about your experiences with dementia in your family. It takes a lot of courage to share such personal stories publicly. Your humor is indeed a relief, and it’s clear that sharing this with others helps you cope. If you ever need someone to talk to or just need some company, please don’t hesitate to reach out. Sending you lots of support and compassion <3


    [quote quote=433693]Yes, you have quite a difficult life ahead with ataxia. People who have this usually have it full blown by age 45. There is little to no chance of recovery. Sad. And there is incredible stress with living with someone who has this. Realization of this becomes stronger as it progresses. Often the partner learns of the reality of how hard it is to deal with, much later. I am impressed at your words of dedication to this woman[/quote]

    Thank you for sharing this with me. Could you tell me more about how you know about this condition? Honestly, the part about it getting worse by 45 is a little concerning, I’ll admit


    [quote quote=433691]It might be worth going into a similar level of detail about her condition as to here because looking online is quite alarmist. There is a lot of variability in life expectancy for the condition. Some are wheelchair bound or die very young. Some fair a lot better and live into 50s and 60s. So really it is a case of discussing her particular difficulties and concerns as opposed to leaving it to the imagination which might cause you some trouble if they mistakenly believe she could be in the worst case situation and she’s not (hopefully). I think being realistic and practical about the future like you are is a good idea. Well done on being so mature.[/quote]

    I totally get what you mean about online resources being scary when researching conditions like my girlfriend’s cerebellum ataxia. The thing is, she got this from exposure to sulfonamides due to childhood antibiotics – it’s not genetic! Unfortunately, the brain damage is permanent, which explains why she still struggles with fine motor control even though she no longer takes those meds.

    What’s hard to find online are stories about people living normal lives with ataxia. Most folks I’ve read about are wheelchair-bound and lack autonomy. Does this information help?


    Just wanted to clarify that my girlfriend’s ataxia condition isn’t genetic. The only concern we have about having kids is that she’s currently in her early 30s, which might make it more challenging for her to get pregnant or experience complications during pregnancy. Thanks for the response, Helcat!


    I wanted to provide a bit more information about my girlfriend’s neurological condition, ataxia. She struggles with fine motor control, balance, and has a shaky voice. While she’s currently pretty independent and can accomplish most tasks on her own, there is always the uncertainty surrounding whether her condition will progress or remain stable. I do help her out with some things right now as they are hard for her, and I do not mind at all. It worries me because I can see even now that small struggles with fine motor skills make her really frustrated and upset. If it were to deteriorate, I’m concerned about how we’d handle the loss of autonomy she might experience.

    I want to be upfront about this because I believe that being honest about our challenges and concerns is an important part of building trust with one another. It’s not just a matter of “getting used” to these things – it’s about acknowledging the reality of the situation and working together to find ways to adapt, accommodate, or overcome them as needed.

    I asked more questions about her ataxia, which made her feel upset because she thought I was considering whether it would be a deal-breaker. She felt like I was weighing the pros and cons of being in a relationship with someone who has this condition.

    For me personally, this means that once I make a commitment through marriage with her (assuming we get there, and it looks pretty likely!), I’m gonna be there for her no matter what. That includes helping her navigate any changes in her condition, advocating on her behalf when necessary, and being a supportive partner throughout the journey.

    I know some of you may be thinking “wait, isn’t this going to affect your life plans?” or “won’t it be too much to handle?” And I get that. It’s natural to worry about how we’ll adapt to new challenges, and I’ll admit, that’s also a concern for me.

Viewing 7 posts - 1 through 7 (of 7 total)