wishmobbing
Senior member
- Joined
- Dec 5, 2017
- Messages
- 871
- Reason
- Lost a loved one
- Diagnosis
- 07/2017
- Country
- DE
- State
- BW
- City
- Stuttgart
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:
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:
