Scared, Sad and Overwhelmed

[Iscah1]

I think it’s the multi day program because my husband was told we’d be there all day for testing over two days.

 

[Nikki J]

Yes that sounds like it. We have had a number of people here do it though everyone I can think of at the moment ended up not having ALS

 

[Buglaw]

So sorry for your diagnosis. Just popping in to say I was also recently diagnosed and have 1 (soon to be 2) young children. I don’t really have any advice on that front as we are trying to figure it out as we go. If you ever want to chat about parenting with ALS, feel free to shoot me a message.

 

[Iscah1]

So more sad news today. My husband did not qualify for a research trial bc his breathing capacity was too low. This was supposed to be the one bright light in the black hole called ALS. He was breathing fine in late November when he was diagnosed but now today it is 51% (not sure what that measures but it’s low). I was hopeful that his ALS was slow progressing bc there hadn’t been increased weakness, but I was very wrong. He doesn’t qualify for a bipap yet but I’m so scared. We go to the ALS clinic next month but I’m not sure what they can do. Do most research trials require the patient to have no breathing issues? By the way, it was a trial to test breathing therapeutics for ALS patients. 🙁

 

[Nikki J]

Sorry to hear. Yes I think pretty much every trial has a breathing cutoff. It is occasionally 50% Healey platform is. He clearly has compromised breathing but svc ( the usual measure) can be affected by fatigue or a recent meal. Also if he has bulbar issues he might not make a good seal. Unfortunately the majority of PALS do not end up qualifying for studies for various reasons

 

[Iscah1]

That’s sad to hear most don’t qualify. I was so hopeful that we could be part of something that works. I’ll keep praying.

 

[Mary2]

I am sorry your husband did not qualify for a research study. My understanding is that there are 3 main ALS drugs and Neudexta for Bulbar symptoms and emotional lability. The 3 main ALS drugs are Riluzole, Radiciva and Relyvrio. I am a caregiver and haven't researched these drugs in depth very much. My husband is on Riluzole and Relyvrio is a new drug that ALS patients are trying to get prescribed now.

 

[Buglaw]

Have you talked with your pulmonologist about a BiPap? I know a number of clinics are suggesting them at 75% now instead of 50%. I think there is reasonable research suggesting it improves quality of life and survival.

To echo the point made above, my fvc numbers bounce around in about a 10-15 point range. I signed up for some observational studies and two have me take my svc monthly. The first time I saw it drop by like ten points in a week I got kind of nervous, but then it was back up to where it started two weeks later.

 

[affected]

Really sorry for this news.
Would you mind updating your profile with the diagnosis date as 11/2022. That way, further down the track we won't ask you to remind us when it was.

 

[Iscah1]

He had a pulmonologist for allergies, but I’m going to call the Dr about the breathing issues tomorrow. Interesting that the numbers bounce around. I’ll tell Larry. Any type of hope is good news (as good as it can be with ALS).

 

[Nikki J]

I had a similar experience to Buglaw. I had a study svc then a few weeks later clinic and it had dropped a lot. They said don’t worry and my next one was back up. And I wasn’t tired nor had I just eaten

 

[Lisa S]

I’m sorry to hear about your husbands recent diagnosis. I joined this group this morning and hope I can provide you some strength as I’ve been reading through many posts and my heart is warm with how much love and kindness this group offers. My father was diagnosed last week - on Friday, January 27, 2023. My parents relayed the diagnosis in person. Your children are much younger than I am ( I’m 36) but hearing it in person and giving my father a hug right away helped. Since then, my emotions have been mixed. They change by the minute and hour. I have a 3 month old baby so processing my thoughts while trying to be a good mom is a challenge. I’m heart broken. I’m so sad. I’m angry. I feel helpless… the array of emotions are raw. My advice is to allow your children to process and feel how they need to. I am an only child and have such a close relationship with my parents so I’m devastated.

In my line of work, I often have to relay horrible news and conduct next of kin notifications about the passing of a loved one. I have always been told and trained to do so as empathetically and straight forward as possible. My father told me he had ALS and hearing him say those words gutted me but there was no confusion in my mind.

I’m sending love your way. I’m so sorry your family is having to go through his right now.

 

[Mary2]

Lisa, Sorry to welcome you to the Forum. I have found this forum informative and helpful for emotional support.
I am sorry to learn about your Father's diagnosis. I am thinking about you and. your family.

 

[Lisa S]

Thank you Mary. I’m sure as I continue to digest the recent news, I’ll have questions and require support.

All the best.

 

[Mana]

Also sorry to welcome you, Lisa. My husband was diagnosed one year ago and telling our 3 adult children and 6 grandchildren was the first difficult thing for us both. Over the last year the love and support we've both gotten from all of them has given us so much gratitude and the grandkids give him real joy. I'm sure your parents will feel your love, and all of you will feel all the feelings. We continue to settle into understanding what this diagnosis means to us. This forum is a safe and caring place to vent, learn, and share. You will find a lot of wisdom here.