A chronic illness vs terminal one

[mygirls]

Hi,
Please bear with me. I'm new to this. I'm a young mom who has been told that I probably have ALS. More EMGs are pending to confirm.

I happen to work in health care so I'm familiar with profoundly disabled people. I know that my experience is that people are told to embrace quality over quantity, but as I'm able to see my young children grow, quantity IS quality for me. I'm not afraid of disability, but I am afraid of leaving them. I want to know how impossible it is to extend my survival. I am willing to live with invasive ventilation and feeding tubes if I know I can see my children get bigger. Is there hope that with great care and accepting all interventions, I can have some control over my longevity and surpass 10 yrs?

Thanks for helping me prepare myself and put into perspective my prognosis.

 

[Nikki J]

Hi I am sorry you are in this situation. Your post was moved because you say “ probably” and pending EMGs. We ask people to stick to this forum until / unless they get a firm diagnosis.

If you remain not definitely diagnosed after almost a year ( at least judging by your join date) you are , if this turns out to be ALS, apparently a slow progressing case. Diagnostic delay correlates with slower progression and longer survival.

People who choose to vent can live for many years. Not everyone who vents does due to infections and other medical events. Other ways to increase your chances would be maintaining weight, avoiding falls and as much as you can infections and early non invasive respiratory support.

no one can change their inherent progression rate but sometimes ( especially if it is slow) it seems like it can be mitigated.

Venting does not stop progression and one thing people need to discuss is what happens if they become completely locked in. It can happen without a vent but is much rarer

I trust you are being followed by MND specialists at this point

 

[nona]

I read your post and it broke my heart. I pray that your EMG comes back negative. I won't speak to the technical side of your questions but I will say that ALS has its own schedule. I was an administrator and control freak who had to learn early on to take the changes as they come. We can research, consider, discuss, plan options to address the losses we bear, but we are largely bystanders to a progression that charts its own course. You will know as time goes on how you feel and whether your strength will last. I've lived longer than the average but I only look a few months ahead at a time. I'm sorry if I rambled. My point is that most of this is beyond our control, and I've found the best comfort through living in the moment.