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19 July 2011
My mom was diagnosed with ALS today. I'm feeling kind of broken-hearted and sick to my stomach.
Oh amro I'm very sorry your family is going through this. What a sad and difficult time this must be for all of you. You and your family are in my thoughts and prayers. (((((((((((amro)))))))))))
Five years ago, my mom was diagnosed with a deadly lung disease that affects 2 people in a million. After googling -- which we all did -- it seemed like there was absolutely no hope. She'd be gone in six months, by all online accounts.
That wasn't the case, and she's still with us.
All this is to say that it's really, really hard at first to deal with that news. But you have to let it sink in, and then move forward. The good news is that the moving forward bit isn't always as bad as you think it will be when it's sinking in. It's hard, yes, but let your imagination rest for now. And for god's sake, don't do much googling. I speak from experience.
Earlier this year, I re-connected with one of my oldest and best friends. We've known each other since middle school, which is around 20 years now. His mom was an administrator at our high school and I hung out at his house a bunch in those days. We worked at our first job together and both stayed for two+ years. Every time I came home from university or living elsewhere, we hung out and it was like no time had passed at all. Then our lives kind of diverged and we were both going through some shit and lost contact for a few years.
So, again, earlier this year, we figured out we were both back in town and hooked up over dinner and beers. Of course, one of the first questions I asked was "how's your family?". I quickly learned that his dad had been diagnosed with ALS early last year and I was just speechless. He's my third friend to have an ALS parent, but by far the one I'm closest with, and the only one whose folks I'd had a relationship with previously. It's devastating, and maddening and sad as all hell, and I can see it in his eyes. It's hard for me to watch.
Since then, we've been hanging out 2-3 times a month and he visits his folks (who are two states away) quite a bit and he feels comfortable enough opening up to me a bit about what he's going through and things, right now, are going okay on both fronts. His dad's ALS showed up in his mouth and throat (which I understand is *extremely* rare) and has affected his ability to speak and eat, but he still plays 9 holes of golf once or twice a week (walking the course, not in a cart) and things have kind of stalled for now, which is great. His mom has gotten very active and raised over $6.5k on her own in the big fundraising walk last month. Naturally, there's an looming sense of fate that doesn't entirely go away, but things right now for he and his family are (for lack of a better word) relatively pleasantly stable. Not normal in the sense that they knew it before the diagnosis, but a far cry from the the initial shock.
I don't know if that'll make you feel any better or not. I just thought I'd share A's story with you in hopes that it'll at least help you feel less isolated as you begin to attempt to process this. He's out of town at the moment, but if for any reason you'd like, I can ask him if he'd be willing to be start an e-mail correspondence with you.
And for god's sake, don't do much googling. I speak from experience.
Good grief yes. And please take care of yourself here too ... give yourself room to feel it all. The situation can be scary enough; don't fear your own emotions on top of all that. Life gives us these fucked-up and seemingly inappropriate moments to get closer not just to the people we love, but to ourselves.
I am so sorry to hear that, amro. I just learned less than a couple of months ago that a cousin of mine has ALS. She's 41 and has four children ranging in age from 13 to 4 — she just began having medical troubles right after the fourth one was born, though it was some time before she got a diagnosis. She's now in a wheelchair though her hands are in good working order, and as she's not one to give up she does whatever she can and enjoys her life. Her sister recently posted some vacation shots of her on her Facebook page, and there were some lovely shots of my cousin lounging on a deck chair on the beach with her little son beside her, both of them beaming as though they had not a care in the world.
Just remember that however many years your mother will live, a lot of living can be done in that time.
I'm so sorry to hear this, amro. Clearly, from just these comments, you can see you're not alone. You've still got a lot of options -- for being together, for doing things, for sharing memories and good times.
I am so sorry to hear this, amro. Hope you can find it helpful to lean on us a bit. Wishing you the best in support, treatment, and lots of loving family and friends around.
Thanks all. I skimmed the Wiki article on ALS but I couldn't bring myself to read it thoroughly and I can't bring myself to google it further. Odd for me, because normally I want all possible information available to face a challenge, but for the moment ignorance is bliss.
Oh, amro, I'm so sorry --- what shocking news to absorb. Take good care of yourself right now.
How smart of you to follow your instinct right now by not forcing all the info on yourself: take your time and be kind to yourself as well as your mom.
My dad was diagnosed with ALS in 2008. He told us on Father's Day. You can see my panicked AskMe if you look through my history on metafilter.
Dad's still around, though. I just visited him for Father's Day, again.
I have many, many pieces of advice for you, if you'd like. I can help you understand your way around the disease, from a son's perspective. Drop me a message via Mefi.
I am so sorry to hear this. I did post in this thread earlier today, but my comment isn't showing. Paraphrasing what I said then, my thoughts are with you and your family, amro.
Well, that's rotten. FUCK YOU, ALS! I'm sorry to hear it, and glad that your Mom has you to love her and help her deal with this shitty news. And, HEY, ALS, Leave Amro's Mom alone!!!!!
I don't have words that work and can't think of anything to say that will help. Words seem inadequate. It's all new and there is much adjustment to be done but we adapt to new circumstances with surprising capability. I can't even imagine it from your mother's point of view. All I can wish is luck and the best fortune that can be hoped for.
Hi again. When my dad got ALS, it started in his throat / mouth, meaning that his speech was slurred, and he was starting to have trouble eating.
After the initial shock, I bought a nice new video camera and began to film him. I asked him to start telling stories -- the ones he told us a million times before. We went through photo albums on camera and talked about the people in them.
We ate his favorite foods and drank his favorite drinks as often as we could. There was no way his diet could kill him now, before he would no longer be able to eat.
We did everything ahead of schedule that would eventually be required, such as the feeding tube and tracheotomy. This was based on prior research that showed that the earlier these things were done, the better survival (people usually wait too long, to their detriment).
There are many tools and resources out there for ALS patients and their families. You will find them by looking on the internet. Try the ALSA website, and patientslikeme.com (which was started for the purpose of ALS research).
One of the hardest parts is finding people that understand. It's similar to support groups for people who lost someone during the war; there is something there that is hard to understand without being there. (This is true for many things, though, not just ALS and war widows.)
Every time I try to explain to someone what ALS is, and what it means, and what it has done to my dad, I can't help but start getting misty-eyed. I usually have to cut it short so that I don't start all-out crying. I am a grown-ass man, a litigator, I deal with injured people and people who have lost loved ones all of the time. But this brings me to tears.
To say that ALS is tragic is an understatement.
If I was to give you one actual piece of useful advice, it would be this: Understand that ALS, for some reason, amplifies some emotions while it dulls the senses. This means happiness, but it also means sadness, and it also means anger. For your sake, understand this.
My dad is still alive, three years later, and his prognosis is good for now, so understand that the stats you read do not need to apply to you and your mom, not necessarily anyways. Take care of yourself, and your family, and your mother.
I bought a nice new video camera and began to film him. I asked him to start telling stories -- the ones he told us a million times before. We went through photo albums on camera and talked about the people in them.
I thought about doing this but I worry that it will be too obvious that I'm doing this because, hey mom, you're not going to be around for long. Like, I feel like maybe I should just pretend that everything is normal around her. I guess I need to just take my cues from her. I wish we had already been in the habit of videotaping things, but neither I nor my parents have ever owned a video camera (though now of course we have digital cameras that can take short videos).
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