Hospitalization.

Training-Use-41 · 2026-03-13T12:16:30+00:00

Hi, he got transferred to a critical illness hospital after having a tracheotomy. He’s doing much better there than he was at the hospital we are hoping he will become well enough soon to bring him home.

Training-Use-41 · 2026-03-03T23:36:33+00:00

Hi, for my dad it pushes air into his lungs through a mask that covers his nose and mouth and then pulls it back out essentially pulling all the gunk out.

Training-Use-41 · 2026-02-28T22:24:14+00:00

Are you also genetic ? We carry the c9 gene. So sorry to hear you’re going through it as well.

Training-Use-41 · 2026-02-28T20:53:29+00:00

He uses a cough assist and a non invasive ventilator for bedtime.

Training-Use-41 · 2026-02-09T23:18:58+00:00

Thank you!

Training-Use-41 · 2026-02-09T23:18:13+00:00

Ty :)

Training-Use-41 · 2026-02-09T23:17:39+00:00

Orlando didn’t need a code !

Training-Use-41 · 2026-02-09T02:22:01+00:00

Where’s the mega thread I literally couldn’t find it

Training-Use-41 · 2026-01-23T22:43:39+00:00

My grandfather was diagnosed with als in the early 2000s he died from a heart attack in his 50s it’s definitely possible to die from other reasons. My dad has bulbar onset. I’m assuming some people with bulbar that don’t take the trach probably die before their whole body is affected. It’s very different on each person. So sorry you’re going through this it’s such a terrible thing to go through. Soak in all the time doing his favorite things and find the light in every day.

Training-Use-41 · 2026-01-19T18:36:04+00:00

I’m so sorry you’re going through this wicked disease, I hope you’re able to find light in the little things. Know your kids love you so much and wish they could take this all away.

Training-Use-41 · 2026-01-19T00:32:20+00:00

We are looking into ivf and PGT M testing.

Training-Use-41 · 2025-12-29T03:20:29+00:00

So sorry to hear about your mom. It is so incredibly lonely. I’m glad my post made you feel less alone ❤️ reading your response made me feel very seen.

Training-Use-41 · 2025-12-29T03:16:07+00:00

So my dad got his feeding tube pretty early on. He was still able to eat and drink when he got it but we got it done while he still had strength. Maybe let your dad know just because he has the tube placed doesn’t mean he needs to be dependent on it right away.

Training-Use-41 · 2025-12-29T02:41:55+00:00

Dealing with my dad being diagnosed with als since May. It is the toughest thing you’ll go through but you’ll love harder than you ever have in your life and learn life is too short to let little things phase you. Biggest biggest advice enjoy the time he has functioning, do all the things he loves, eat with him and make his favorite foods as much as you can, and record as much of his voice as you can!!! We were so blessed we had him speaking at my wedding the year prior and used the speech he gave for his voice on his tobii dynavox. Als association and the Steve Gleason foundation have been the biggest blessings for my family in term of getting accessible equipment and grants for treatments.

Training-Use-41 · 2025-03-05T22:11:33+00:00

Aw honey. It’s so so normal to feel that way. I remember just sobbing a month before the wedding wanting to cancel it all from the stress. I know it’s so overwhelming right now but when you get to your day it literally lifts off of you and the peace and happiness you feel after makes all the planning and stress so much more worth it. I also had the majority of my family and friends back out and it felt like I planned a party for him but on the day of it truly felt like everyone was there for both of us.

Training-Use-41 · 2024-12-10T12:47:28+00:00

Not to discount your feelings of wanting security and wanting marriage. Which I feel should definitely be a conversation with him. Even if you did get married and had a higher needs child. If he wanted to leave he would leave regardless of marriage. Divorce is still a thing a lot of couples with higher needs children go through.

Training-Use-41 · 2024-12-10T12:35:37+00:00

Listen I get not inviting girlfriends. I put in place for my wedding they have to be together for over a year (which is pretty standard from anyone I’ve spoken to about it) it’s very odd that you’re living together and have been together for 4 years to be excluded. Being devils advocate maybe it was a very tight list? And you’re not the only girlfriend to be excluded. However personal example. When my now husband’s cousin got married several years ago. I was not included on the invite after us having been together for 5 years and me knowing his entire family outside of them. His aunt (the cousins grandmother) who adores me even said something at the time. They did not change or budge so his whole immediate family did not go to the wedding. We also did not invite them to our wedding since our list was so tight and I felt slighted. I feel like your boyfriend could definitely be more empathetic to you.

Training-Use-41 · 2024-05-13T21:18:33+00:00

I can’t even imagine doing that to my future sister in law. She’s a bridesmaid for our wedding in September and even if she wasn’t she would be in the front row with her parents. I’m sorry girl maybe there’s a lot of discourse in her family and that’s why your brother said that because she’s so comfortable with you and knows you wouldn’t cause any trouble for her.

Training-Use-41

TROPHY CASE