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Senior member
Dec 5, 2017
Lost a loved one
Hi folks!

I have a good feeling about finding this forum! I already found a LOT of helpful information in the german ALS forum, but there's not a lot of people around "living" in the forum, spending time with each other. And that's what I could use, a community where everybody know's what a bad day may feel like and where you can vent, support, ask, listen and of course also laugh a lot. Last night a couldn't sleep and actually enjoyed reading about homemade PEG dinners. A notion I would never have guessed a year in the past.

At the end of January my boyfriend of 15 years started dropping his right foot walking and, sparing you the whole story (for now), he's been diagnosed with familial ALS (his dad died of it when he was a teenager) in July and is in a wheelchair by now, not being able to stand, struggeling immensely switching seats, his right hand is no longer doing much for him and the left hand is going. The horrible bulbal thing is comparatively slow in gnawing at him, there's less power in his speech, he's eating slower and he's exhausted. At the end of January he'll go to a specialised clinic where he'll learn to wear a mask for easier breathing at night. Being confronted with this at age 39 is a bit early for my taste, but then I image myself feeling exactly the same way, if he was 79. It's been a rough ride so far and I'm along for it.

With support of our boss, family and friends we were able to do amonthlong roadtrip along the west coast, only a month after he learned about his condition, mostly couchsurfing, meeting amazing people and enjoying all the aspects of the beautiful word "accessible" that we don't hear all that often back home.

I could go on, tell you about moving to a new appartment, me going back to work full-time, how I collapsed just days before my 37th birthday and our big annual party, being drained already after just a couple of month of this new life. i could go on how brave my boyfriend is and how good it is to have so many dear friends who care for the both of us and how much it sucks to be laid up in bed with a nasty cold, not being able to go swimming twice a week or getting anything else done, including getting tired. Although I can't fall asleep right now my mind is in a good spot so I thought I'd introduce myself, say hi and hope to get to know some of you.
Hi! :grin:
Very sorry to welcome you to our extremely elite club - not a single one of us wants to be a member, yet you won't find a better bunch xxx
Thank you, Tillie! That's the perfect welcome!
We may be down s*** creek without a paddle but I packed snacks and someone even brought a guitar, hehe.
By the way, how do people feel about strong language? I really wanna make a good first impression, but after that all bets are off. I could always claim that in Germany it's considered a compliment to use swear words in front of a trusted person...
Hey :)

Guitar is a great idea as are the snacks!

Here are the forum rules:
"Although the administrators and moderators of ALS/MND Support Group Forums will attempt to keep all objectionable messages off this forum, it is impossible for us to review all messages. All messages express the views of the author, and not the owners of ALS/MND Support Group Forums. We (ALS/MND Support Group Forums) will not be held responsible for the content of any message posted by a visitor or member to our site.

By agreeing to these rules, you warrant that you will not post any messages that are obscene, vulgar, sexually-oriented, hateful, threatening, or otherwise violate any laws.

The owners of ALS/MND Support Group Forums reserve the right to remove, edit, move or close any thread for any reason."

I don't think you will find much in the way of "swear words" in here, but you will find lots of emotion. I've been known to say that I effing hate ALS :D
Hi Wish!
Welcome aboard! I figure, if you do utilize a bit of profanity, at least I'll be able to learn something new to say!
Can't be all bad if you're learning something new, right?

Sorry to hear about your boyfriend and his dad, WM. He may wish to get genetic testing/participate in research if available there.

We're all here for you.

Welcome to this wonderful group of people. You can always come here to vent, ask questions or offer advice. We are all living with the monster in the closet and hate what it does. We all have different personalities and different views but we all have the hatred of this disease and what it does to our loved ones in common.
Thank you all for the warm welcome!

@Tillie/Angie: Aaaaah, using German profanity on an English language board will count as adult education and I forgo self-censorship. Sound like a verdammt good solution!

@Laurie: He's been to a neurological clinic where they found out that it's the C9orf72 mutation. Some thrilling research going on in his direction, but I fear that he's to early to reap the benefits. Anyway he's registered in case an interesting study comes up and the worst that could happen, is that they just get more data to work with.

Today I cold-called a bunch of (former) caretakers from a support groups phone list (to maybe get a recommendation of a mobile nursing service) and it was amazing to talk so freely with people I've never met. The disease cuts right through the chitchat.
All in all a good research day, while my boyfriend had an outing with some colleagues to eat burgers and cajun fries at the first Five Guys in Germany, haha. And because I read here how much calories a milkshake has, he got a caramel-salt flavoured one and actually finished it! I'm very proud.
Come on up to the CALS section and be very welcome :)
Sorry to have to welcome you here, but welcome anyway. Your English is fantastic. Are you native German?
Wish - welcome to our little slice of heaven on earth! Don't want to have to welcome you hear, but you will love it. The best group of people around. Oh and I've been known to use words with just one or two letters replaced with @.


@Karen: Thank you! I'm native German and started learning English in school when I was maybe ten years old. But it only really took after I finished school, started reading english books and watching The Simpsons in the original. Basically immersion in American pop culture. Now I could use the cliff notes on all the terminology and abbreviations here but I'm getting there. Educated guesses and Google, when I'm clueless I'll just ask. Please feel free to correct me.

@Sue: Hehe, I know loooong words, one or two letters mean nothing to Himmel@rschun@zwirnkrutzitürkennochamal!
Cool. I’ve always loved The Simpsons.
you are cool wischmop!
another German
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Here we meet again! I still have no clue where that german ALS board's chat might be hidden, but who cares after I found this place.
By the way, is there a chat here someplace or is leisurely bullsh@tting limited to the joke threads?
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