Avocado
Active member
- Joined
- Oct 8, 2017
- Messages
- 44
- Reason
- CALS
- Diagnosis
- 02/2017
- Country
- AUS
- State
- Western australia
- City
- Perth
Hi folks,
I have been spending spare moments the past few days, as few as there seem to be, reading some of the posts on these forums. Some are comforting, some are helpful, some are terrifying and fill me with dread for what is to come. Whatever emotions the posts inspire though, it seems like a wonderful and supportive community here, so I thought it might be time to say 'hello'.
My name is Tara. My husband, Neil, started having symptoms around the middle of last year, and was diagnosed with ALS in February of this year. At that time he was walking with a cane, still taking care of himself, going up and down the stairs, and driving. He is now in a power wheelchair all the time. His speech has slowed and is unclear. He can swallow and eat, but I often have to help him. How can this all have happened so quickly?
It seems that every day there is something new he cannot do for himself. Extra things for me to do when I am already struggling to do everything, but I guess you all know how that is. So busy, so tired, so frustrated and sad. I want to feel a bit sorry for myself but every time I do I feel guilty because for all of my pain I know his is worse. And even though I do so much for him now, I still feel helpless because I can't do anything to make anything better. I make a lot of ice cream because he loves it. It used to be an occasional treat and now we have it pretty much every day, and sometimes twice. Today I made chocolate with brownie chunks, and a ricotta ice cream with cardamom and blueberries, and he loved them both. It's such a silly little thing, but ice cream seems to bring happy moments and every happy moment counts for so much now.
I have been spending spare moments the past few days, as few as there seem to be, reading some of the posts on these forums. Some are comforting, some are helpful, some are terrifying and fill me with dread for what is to come. Whatever emotions the posts inspire though, it seems like a wonderful and supportive community here, so I thought it might be time to say 'hello'.
My name is Tara. My husband, Neil, started having symptoms around the middle of last year, and was diagnosed with ALS in February of this year. At that time he was walking with a cane, still taking care of himself, going up and down the stairs, and driving. He is now in a power wheelchair all the time. His speech has slowed and is unclear. He can swallow and eat, but I often have to help him. How can this all have happened so quickly?
It seems that every day there is something new he cannot do for himself. Extra things for me to do when I am already struggling to do everything, but I guess you all know how that is. So busy, so tired, so frustrated and sad. I want to feel a bit sorry for myself but every time I do I feel guilty because for all of my pain I know his is worse. And even though I do so much for him now, I still feel helpless because I can't do anything to make anything better. I make a lot of ice cream because he loves it. It used to be an occasional treat and now we have it pretty much every day, and sometimes twice. Today I made chocolate with brownie chunks, and a ricotta ice cream with cardamom and blueberries, and he loved them both. It's such a silly little thing, but ice cream seems to bring happy moments and every happy moment counts for so much now.
