Avocado
Active member
- Joined
- Oct 8, 2017
- Messages
- 44
- Reason
- CALS
- Diagnosis
- 02/2017
- Country
- AUS
- State
- Western australia
- City
- Perth
I have lingered a lot on these pages the past few months, but not really participated. Thank you to all of you for sharing your stories, insights and experiences. It’s been so helpful to me so often, and comforting to know there is such a supportive community of people here who actually know what its like.
My PALS was diagnosed about a year ago. He is in an electric wheelchair now, hoisting for all transfers, completely dependent. He has coped so well with all the losses, keeping a stiff upper lip, still laughing and enjoying those things he can. He’s been pretty amazing.
But recently, his remaining hand control is starting to dwindle, and he is now having trouble controlling his electric wheelchair and the remote control for the TV - possibly the last two things he could still do independently. We are looking at alternative technologies - head controls for the chair, and eye gaze software for infrared tv controls and communication and the like, but that in itself just seems to get him down.
Worse though, is that his voice is also starting to fail him. For all the things he has lost, this is the loss that has hit him hardest of all. The idea of being in his useless body and not even able to have a conversation is really getting him down. Until recently, he enjoyed a glass of wine in the evenings, but he’s gone off that too. Instead of sitting in the evenings, chatting and having a drink together, he now just wants me to read to him. He has always been a wine lover, but says it doesn't taste the same anymore.
I think he doesn’t have the energy to talk, and it frustrates him that I sometimes have a really hard time making out what he is trying to say. He jokes less, and laughs less. I can’t blame him for that, I just wish I could say or do something to make him feel better. But what do you say to someone when there really isn’t anything that you can be sure of except that things are going to get worse? I do absolutely everything for him, and yet there is nothing I can do, and on top of being overwhelmed and exhausted, I just feel so helpless.
I needed a little rant. Thanks for listening. -Tara
My PALS was diagnosed about a year ago. He is in an electric wheelchair now, hoisting for all transfers, completely dependent. He has coped so well with all the losses, keeping a stiff upper lip, still laughing and enjoying those things he can. He’s been pretty amazing.
But recently, his remaining hand control is starting to dwindle, and he is now having trouble controlling his electric wheelchair and the remote control for the TV - possibly the last two things he could still do independently. We are looking at alternative technologies - head controls for the chair, and eye gaze software for infrared tv controls and communication and the like, but that in itself just seems to get him down.
Worse though, is that his voice is also starting to fail him. For all the things he has lost, this is the loss that has hit him hardest of all. The idea of being in his useless body and not even able to have a conversation is really getting him down. Until recently, he enjoyed a glass of wine in the evenings, but he’s gone off that too. Instead of sitting in the evenings, chatting and having a drink together, he now just wants me to read to him. He has always been a wine lover, but says it doesn't taste the same anymore.
I think he doesn’t have the energy to talk, and it frustrates him that I sometimes have a really hard time making out what he is trying to say. He jokes less, and laughs less. I can’t blame him for that, I just wish I could say or do something to make him feel better. But what do you say to someone when there really isn’t anything that you can be sure of except that things are going to get worse? I do absolutely everything for him, and yet there is nothing I can do, and on top of being overwhelmed and exhausted, I just feel so helpless.
I needed a little rant. Thanks for listening. -Tara
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