It’s been 6 weeks….

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CJV

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Joined
Sep 22, 2021
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15
Reason
PALS
Diagnosis
01/2022
Country
US
….since diagnosis. The weeks have been filled with telling everyone, from friends, to neighbors, to accountants, contractors and everyone in between. Filled the weeks with paving way for bathroom remodel to accommodate me, going to first clinic, therapists, voice banking and even squished a Disney trip in with my grandsons.

My every thought is ALS, the unrelated brain tumor found during MRI, the dignity loss that I will experience. I’m having trouble living in the moment as every movement with my arms reminds me of the nightmare to come.

I have a unique perspective since my first husband died of FTD, ALS variant. I’ve seen it, I’ve lived it and now I’m subjecting my new husband and family to the nightmare I lived.

Feel like I’m drowning. Thinking of putting an end to this in a dignified way. My grandsons are the only thing buoying my mood.
 
I'm not sure what to say but that I'm so sorry you are facing this. Big hugs to you. ❤
 
It sounds like you are trying to live in the moment (in which no one is completely successful), as well as planning for the future. That is all any of us can do. I'm glad your grandsons are a joy to you and hope you have many more excursions and diversions, some planned and some not. You may also find there are projects that you wish to leave for them or others.

Six weeks, even though you lived it before as a CALS, is not that long. Give yourself time to grieve and to decide how you want things to go, generally. You can make a U turn at any time, but don't pull over in the dark.

Best,
Laurie
 
You are certainly not alone in having been a CALS and getting ALS after. with FALS this is usually the way it works. Most of us knew we were at risk but it remains a shock. And it is different when they tell you because you don’t just know intellectually what it means you see every step in your mind. But as I think I said before you path is your own and it won’t be exactly the same as your husband especially as he also had FTD. my mother had the combination , my sister had ALS. My road has been nothing like theirs. It is more like that of one of my aunts but has significant differences even there. And we all had the same cause and shared a lot of dna.

a research coordinator of a study I was in said to me it must be easier for me because I knew what to expect. That is one of the most ridiculous statements I have heard.
I am sorry you are also dealing with a brain tumor. That is very unfair too.
 
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