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Living with Polyneuropathy CIDP, GBS, & CMT

How Can I Help?


#1

Hi all,

I am not personally effected by CIDP, but my dad is. I am struggling to understand how I can provide support, emotionally or otherwise. He is very quiet and does not articulate what he’s feeling/thinking/struggling with, but I know it’s not because they are not there - it is just being internalized.

I guess in short I’m wondering what you wish people knew, or what has been most meaningful in terms of support. I imagine it’s something that can only be impacted so much by external factors/other people, but I’d like to think every little bit helps. I certainly do not want him to feel like he’s alone in this.

Is it helpful to have someone encourage you to engage in more activities? Or better to have someone who stops trying to do that and understands that staying at home is all you can do? Do you like to talk about it or do you appreciate when someone just sits in silence with you when you’re having a difficult day? Is there anything else that you really appreciate or really detest from others?

I understand everyone is different, but I feel ignorant as an outsider and don’t want to be insensitive or negligent when trying to help. Appreciate any insight you’re willing to give.


#2

Sorry no one replied. This is a great question, but the way you asked it makes me think you are already a great help to your Dad.

Being a great listener is probably top of the list. By listening and knowing him, oerhaps you can discern when he needs a sympathetic ear, a push or encouragement to get off his butt, or something in between. He will not feel the same from day to day
I can guarantee that there are chores that need doing that he can do on his own, but if you were to do some of them, he may have a bit of energy for something more fun.
He’s lucky to have you.


#3

Hi Emily,

I’m sorry I missed this post earlier. I agree with @Jeff, I think you are already on the right track. This post may have some useful ideas.

CG


#4

Possibly introduce him to this site, I would think this could be a great help. If he lives in Canada like I do, he probably does feel somewhat alone in his fight. I live in London and there may be 3 or 4 others that have CIDP in the city, but in the last seven years I have yet to find them. I have tried to start a group in the main library with a turn out of zero. Gary


#5

Hi Emily, my wife is an RN, so I am very blessed to have her in my life. She listens to me when I need to talk, but is never judgmental with me. Does she get tired and irritated? Of course! Who wouldn’t? She doesn’t Baby me at all, but she isn’t mean either. She is always encouraging me to exercise and stay busy. She knows the importance of not giving up. I can be hard to live with. My pain NEVER goes away, and the body aches and headaches are overwhelming at times. I can’t do all the fun stuff I used to do and it sucks, but I’m learning to shift my priorities to fit my abilities. Bless your heart for being there for your Dad! Jack