ALS like wildfire

[Kingston]

My wife first presented with symptoms in her right hand in March of 2022. She was diagnosed with ALS in May of 2023, although the neurologist said in Nov 2023 that it was likely ALS but he still needed to rule out a few things. She passed away in Nov 2023.

I'm still in shock at the whirlwind that was this disease. 18 months from start to end. It started in the right hand and arm, then right leg, then left leg, then left arm. Finally it attacked her breathing and she opted not to go on ventilator.

We were prepared for a long battle. The disease went through her like wildfire. I can't imagine why it went so fast but everyone is different. Has anyone else heard of cases that go this fast that aren't bulbar onset?

Six months later I am coping, missing her every minute pretty much, and trying to figure out just what the hell I am supposed to do now. She was just 61 and we'd just retired.

 

[lgelb]

I'm very sorry for your loss at that point in your lives. If she declined BiPAP (not sure if that's what you mean by "ventilator"), the short ride is not too surprising. If she was on it, often there is more time.

It does take time to change direction, which it sounds like you've done twice in two years. Give yourself the space to figure it out, meanwhile putting one foot in front of another as you are doing. We only lose the way when we stop moving entirely.

 

[ReginaS]

Hi Kingston, so sorry for your loss. My life did not go as planned either.

My partner had 16 months from diagnosis to the end and he was diagnosed rather quickly. He used BiPAP but declined the feeding tube. It took me a long time to recover from watching him lose ever more abilities from one week to the next, in the end it was day by day. By the time he died I was very worn out from taking care of him mostly by myself. A whirlwind had gone through our lives. And then the grief. I was not the same person afterwards.

It takes time. I'm much better today. In June he will have died 5 years ago.... I still miss him and the activities we did together. Things will shift slowly. In the meantime I tried to figure out what to do with the rest of my life... First I had to be patient to get a bit of energy back and that took a while, a long while. The waiting was not so hard bc I had so little energy and was not looking for much.

The rest of life did not stop - a daughter got married, the other finished college and started a job and is now going back to graduate school. Now she is talking about marriage. My own job changed. The dog, that Tom knew, died - and now I have another one that he has never seen. I rearranged the house some, gave many things away, visited my children, eventually went back to work. Maybe a daughter will move closer next year. I would be thrilled! Some of the activities that Tom and I did together I still avoid, others I have gone back to and do them on my own. Things are often a bit bittersweet. Sometimes there is the bliss of still being alive. Having gone through ALS as a caregiver I appreciate life more deeply. Just to be able to breathe without difficulties, or being able to move my fingers, or being able to swallow. Many gifts.

I hope life will get better for you too.

 

[cb81042]

My husband’s ALS went from first subtle symptom to death in less than 2 years. He didn’t get officially diagnosed until May 2023 and he died in November 2023 from respiratory failure. He also declined the feeding tube and trach/vent. His was bulbar onset and the worst symptoms for him were speech/swallowing/breathing, but when it started attacking his limbs it was equally aggressive there and the decline in function was shockingly fast.

It simultaneously feels like it was a painfully slow process of watching him deteriorate and yet it also happened so fast that I barely had time to adjust to each new limitation as the disease progressed. Learning to live this life where I’m not constantly on edge and worried about what will be lost next has been a big adjustment. I didn’t realize how stressful it was to be in that fight or flight mode until the most significant source of stress and fear was no longer front and center. I’m hopeful that I will emerge on the other side even stronger and better for what I went through.

 

[Greeneyes]

Kingston, I am so sorry for your loss. My brother just passed away from ALS 2 weeks ago just short of a 2 year diagnosis. He progressed very fast. Swallowing and breathing was very difficult. He was on a noninvasive ventilator and tube feedings. Everyone progresses at a different pace. I wished we had more time with him. We miss him so much.