How do we survive this?

[RandiLynne]

My husband of 32 years was diagnosed with PLS/early ALS on March 10th. I’m not sure what has happened but in just this last week he seems to be going down hill very quickly. When we were at Mayo he didn’t have any speech or eating issues and now his speech has slowed significantly, he says his gag reflex seems to be overactive and certain textures or spices choke him up. He said his right hand is starting to go, and he get so tired so easily.

Just a month ago he was working 50 hour weeks and now after a walk he needs to take a nap. I don’t know if he was trying to hide it or if just being how he is just pushed through and did what he had to do. Does finally getting the diagnosis cause some people to decline at first from the enormity of it all?

His work let him go on Tuesday so now he doesn’t have that to keep his mind occupied. Is he giving in to what’s happening?

This feels like someone else’s life I’m talking about. I’m terrified about what the future holds. I want to scream but am afraid if I do I won’t stop. I cry when I’m alone and try really had not to in front of him. I have moments when I can’t breathe. How do we survive this? How do we focus on the now when all we can think about is what’s to come.

His first ALS Clinic appointment is not until April 27th. Hopefully getting involved with that will help his mental state.

Any advice or suggestions are much appreciated.

 

[Tomswife]

RandiLynne. I am so very sorry you are on this journey. You will discover you have courage and abilities you never expected. You will be the most important resource in your PALS life, more important than the health care providers. ALS is a complex disease and does not take a linear or predictable path.

I think it would be helpful to both of you to document his condition in a journal. I interviewed my husband Tom once a week to keep track of his abilities and changes. Sometimes the decline in some functions may pause with no changes for weeks. And. He may have weak days and stronger days.

The ALSA has a 11 part document about aspects of ALS, by topic. It is on their website. I am attaching just the first part here.

You will both need to plan for the future while also enjoying the current time you have. Try to do something fun at least once a week.

Best wishes and hugs to you.

 

[RandiLynne]

Thank you. There is a lot to do, that’s for sure. This feels like it will change me to the core of who I am. I find it hard to have conversations and even this; it’s like I just have no words, and I can’t think of what to say.

 

[Tomswife]

Yes. Many of us just move forward and care for our PALS somehow. This week I had a night where I got zero sleep, after many weeks of 5 to 6 hours sleep. The following night PALS slept soundly all night.
I dont often reflect back on our ALS journey. But every week has been different and challenging since our dx August 2022.
The advice many will give you is get the equipment you need, before you need it. And plan PALS life with ALS in your home. Is your home accessible? Steps. Stairs. Doors. Privacy. Where will your guy spend his days and sleep. My Tom lives on our main floor in a den next to the bathroom.
This forum has a terrific search engine and resources to help you. Feel free to write about whatever is going on.

 

[Tomswife]

The ALS Association has helpful documents on their website.

als.org/
navigating-als/
resources

 

[RandiLynne]

We got the ALS assoc material today. I’ve read through some of it.

 

[lgelb]

Very sorry to hear this news, RandyLynne.

Just a note as regards the ALS Association (ALSA) that their content can be selective/dated. For example, a PALS does not have to go to one of their "Certified Centers" to get good care. Many excellent centers hold MDA certification instead and you can also get perfectly good care at some clinics that are not certified at all.

You actually do not need an ALS clinic, just a neurologist, as insurance generally requires, to write certain equipment orders and drugs, like a power wheelchair, hospital bed, BiPAP and other items. Access to clinical trials can be another benefit.

Beyond that, whoever you trust can and should still play a role in your husband's care. It sounds like his progression could be fast, so it's good to have some clinicians that you know in your corner.

Cry, scream, whatever, you both will still be you. Don't hide your feelings from each other -- but you will each process in different ways and in part on your own time. Plan and get legal documents done, for sure, but don't look too far ahead, or you will miss out on the life you have now, today.

We will support you however we can.

Best,
Laurie

 

[Tomswife]

Laurie always has good advice.

 

[Tomswife]

Tom has been fast progressing. The clinic visits every 3 months did not meet our needs. We formed a local team- neurologist, internist, pulmonologist, gastrointerologist. For example, my husband saw our neurologist in January and February 3 times (he does have experience with ALS). As Tom has progressed we have depended more on the other specialists and less on the neurologist. All of our team are in the same large medical practice and have access to his records. They also use telehealth when appropriate.

 

[RandiLynne]

Thank you, Laurie. I feel like I’m walking on egg shells, not wanting to say or do the wrong thing. I’m trying to be ok, but I can’t be ok all the time.

What does rapid progression look like. In the week since diagnosis, he has a lot of symptoms now that he didn’t have when testing was being done. His right hand and leg are starting to go, his speech is getting more garbled, he chokes on different textures and spices (says it triggers his gag reflex), biting his lip and tires really easily; talking is tiring for him.

 

[lgelb]

If the new issues stick around on a daily basis, I'd certainly consider progression fast for 7 months or so. That would mean it's time to start work on the power wheelchair order, feeding tube, hospital bed, and BiPAP. If the clinic gave you the next appointment at 3 months, you can speed it up with a portal message, email, or call with an update.

I would also cut out the spices and raw/hard bits like skins, kernels, and seeds. There are a lot of threads here about pureeing food and making smoothies with protein bases like eggs, nut butters, (and/or dairy like cream/cottage cheese/yogurt if he tolerates it).

There's no wrong thing. There's no right thing. There's just the shared and individual things that got you both this far. And it's OK not to be OK. Who would be? You just put one foot in front of the other and sometimes you still get somewhere good.

If ALS gets to rewrite what you say and do, though, then it's not you and him dealing with ALS any more; it's ALS talking to itself. So just check in with yourselves once in a while, because the only force that can separate you from everything you were is you.