gooseberry
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Has anyone heard from her lately? She hasnt been on since the 12th.
Nuts
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bigmark1954
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me neither.......hope she is ok!
Narrowminded
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No I haven't heard from her either
Hugs,
Sue
Hugs,
Sue
Narrowminded
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Thank you Tillie for reaching out to Becky. Please let her know my thoughts are with her and I'm sending huge hugs.
Sue
Sue
Last edited:
affected
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No problem, we had sent a few emails back and forth over the last month or so anyway.
She appreciates her family caring. She has another trip coming up so we may not hear from her here til that is over as each day is becoming more and more time consuming for her.
It might be nice if we just send occasional hugs and warm thoughts to her here like this so when she does get to log in she will know why she was feeling it all
She appreciates her family caring. She has another trip coming up so we may not hear from her here til that is over as each day is becoming more and more time consuming for her.
It might be nice if we just send occasional hugs and warm thoughts to her here like this so when she does get to log in she will know why she was feeling it all
gooseberry
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Thanks for the update Tillie. I miss Becky....she is a bright light. Sending her warm thoughts, prayers, and hugs.
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Glad to hear she's ok. I have kept up with her but it has been a while.
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Reading this thread just brought tears to my eyes. Thank you for caring and reaching out.
Things are changing and I've been trying to pretend that they aren't. Matt's right hand is so weak that we've had his chair controls switched to the left side. He has an awesome arm assist for the right that allows him to feed himself, but that wears him out pretty quickly. His voice has changed to the point that we are now asked how long, rather than if there have been changes, and he admits to choking on drinks and dry foods. The worst thing about all of this is how fast he is progressing....faster than ever before. As you all know, the effort required to care for our PALS increases dramatically as they progress.
It seems like I've been running at full speed since returned from the May trip in order to get ready to leave Sunday for Colorado. This will be ALS hunting trip #3 and, sadly, the final one. He said something in clinic about going again, now that he has a full quad shooting setup, but I don't see that happening.
We've had the feeding tube placed and have looked at speech generating equipment. The problem is access. He has an issue in one eye that makes the eye gaze not work, and the head mouse seems to be a bust because he neck cramps when he tries to bounce it. Yes, his neck is starting to cramp.
If his hands go and he can't use eye gaze or a head mouse, what then? I try not to wonder...
Oxygen was delivered today to bleed into his Trilogy. This will be especially important at the elevations we will encounter on this trip. O lucky me.
My brother in law and his wife were to go with us, but her back is a mess and the doc says she needs to see a surgeon. Our aid is now trying to arrange someone else to take her husband to appointments so she can come with us. I cannot do this alone.
The lift in the van is inop--I take it in Friday morning and pray that it's something simple. I can work it manually, but YUCK.
I just want things to slow down. I know I will hate life when they do, but I'm tired of always being in a rush.
I love you all. I hope to be over this period of denial soon so that I can reengage.
Becky
Things are changing and I've been trying to pretend that they aren't. Matt's right hand is so weak that we've had his chair controls switched to the left side. He has an awesome arm assist for the right that allows him to feed himself, but that wears him out pretty quickly. His voice has changed to the point that we are now asked how long, rather than if there have been changes, and he admits to choking on drinks and dry foods. The worst thing about all of this is how fast he is progressing....faster than ever before. As you all know, the effort required to care for our PALS increases dramatically as they progress.
It seems like I've been running at full speed since returned from the May trip in order to get ready to leave Sunday for Colorado. This will be ALS hunting trip #3 and, sadly, the final one. He said something in clinic about going again, now that he has a full quad shooting setup, but I don't see that happening.
We've had the feeding tube placed and have looked at speech generating equipment. The problem is access. He has an issue in one eye that makes the eye gaze not work, and the head mouse seems to be a bust because he neck cramps when he tries to bounce it. Yes, his neck is starting to cramp.
If his hands go and he can't use eye gaze or a head mouse, what then? I try not to wonder...
Oxygen was delivered today to bleed into his Trilogy. This will be especially important at the elevations we will encounter on this trip. O lucky me.
My brother in law and his wife were to go with us, but her back is a mess and the doc says she needs to see a surgeon. Our aid is now trying to arrange someone else to take her husband to appointments so she can come with us. I cannot do this alone.
The lift in the van is inop--I take it in Friday morning and pray that it's something simple. I can work it manually, but YUCK.
I just want things to slow down. I know I will hate life when they do, but I'm tired of always being in a rush.
I love you all. I hope to be over this period of denial soon so that I can reengage.
Becky
GregK
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Nuts,
Sorry to hear this.
As to what to use when eye-gaze no longer works, check this: Control Bionics - NeuroNode
Sorry to hear this.
As to what to use when eye-gaze no longer works, check this: Control Bionics - NeuroNode
Narrowminded
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Becky - Brian uses just his one thumb that has a little movement to work a micro-switch. They can also use a switch with any muscle that can twitch, like the temple or chin, anything. Don't give up hope, there are lots of types of switches.
I'm so sorry things are moving quickly, it is hard to keep up. Praying you find someone to go with you and that you can get the ramp fixed. Don't do this alone. I know you don't want to disappoint Matt, but please don't hurt yourself in the process.
Hugging you long distance,
Sue
I'm so sorry things are moving quickly, it is hard to keep up. Praying you find someone to go with you and that you can get the ramp fixed. Don't do this alone. I know you don't want to disappoint Matt, but please don't hurt yourself in the process.
Hugging you long distance,
Sue
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