volunteer

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volunteer

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Jun 14, 2013
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Learn about ALS
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US
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vA
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ashburn
Hi. I'm a volunteer with Hospice & was wondering if anyone has any suggestions of "things to do" with a new patient of mine with ALS. I've actually not met her yet. She is 65 and can no longer speak. She communicates through pointing to a board. Any ideas would truly be appreciated. Thanks, Pam
 
I am not sure I understand your question... Did you get some kind of training with Hospice? You will have to get to know her and find out what she likes to do and what she needs help with. Might help to ask her straight forward questions that are answered with yes or no.
 
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Thanks Cricket for your response. Yes, I got basic training with Hospice but not with ALS particularly. I'm looking forward to meeting her & I will ask straight forward questions as you suggested. And thanks for the extra link. Good suggestions on that too.
 
I think one thing any pals would appreciate is massage or range of motion movements. My husband loves to have his hands stretched and rubbed, and his neck stretched and rubbed. He HATES when caregivers do not talk to him like an adult or talk to me and don't look at him. ALS doesn't make you stupid, so treat her with respect most of all.

You sound very caring--and that is the most important thing.
 
Phil loves a massage. I am going to purchase a table or chair. I am not sure which. Phil thinks a chair as he will be able to get in an out of it better since his legs are good. I think a table for total relaxation. of course it is difficult for him to get on and off. We have a retired nurse as a friend and neighbor who gives him massages on occasion as do I which are not nearly as good as hers but our friend will give me instructions. Any input on which one is a better choice from your experience? Thanks.
 
we have a table which we already had (I'm going to not think about the fact that he can't massage me anymore!)
for me to do his shoulders of course it means he has to lay with his head in that hole (we have the head extension), and so far he is coping with that better than I thought he may (he has bulbar involvement), but he can't lay flat on his back, one pillow helps enough, but a chair could be good if you can get to everywhere.

I also am a little scared of massage as my PALS often feels a little weak afterwards.
We are seeing our first PT Monday and I'm hoping to learn a lot about what to do and how.

ROM will be excellent for this PALS, when is your first day with her?
 
Thanks for all your suggestions. I really do appreciate you taking the time to respond. I will meet her today. I'm looking forward to talking directly to her and maybe asking her if she would like a gentle hand massage. Who wouldn't like that? :)
 
Yes! Those are awesome...and head...and feet...i'm next in line! :)
 
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