← Return to Multiple System Atrophy (MSA): How to discuss with family?

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Profile picture for Colleen Young, Connect Director @colleenyoung

Welcome, @ripley77. I moved this introduction post from you into its own discussion. I think it is a good topic for discussion with fellow members when diagnosed with Parkinson's or Multiple System Atrophy and how to talk with family. I'm tagging members like @hopeful33250, @lyndsm @omaralhmoud @karinneke6 @popo1 @mollymae18 and others.

Ripley, from your message, I understand you've recently been diagnosed with MSA-C (Cerebellar Type) vs. MSA-P (Parkinsonian Type). It can be so hard to get the conversation started with your children. I bet they have many questions and might be too afraid to ask. You might not have all the answers.

So where do you start? I look forward to hearing suggestions from others.

In the meantime, I might add my 2 cents. What about starting with something like..."I am finding it hard to find words to talk about my diagnosis. I'm not sure where to begin, but want you to know I love you. Do you have any questions or fears?"

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Replies to "Welcome, @ripley77. I moved this introduction post from you into its own discussion. I think it..."

What an excellent suggestion! I have told the family of my diagnosis MSA C & P. Yes there have been many questions. When I didn't know the answers, I message my dr, and she gives me the answers I need. But it's the next step that I face the unknown. Their accepting my MSA and not becoming paralyzed with it. As an example: Already my middle son thinks he needs to relocate from the San Fransisco Bay Area to Southern CA in the San Diego area. He has a daughter that is with him 50% of the time. I don't want him to leave her because of me. I do not know how I can deal with the aftermath of the initial conversation I had with them. I also feel bad about giving them such bad news. How do others handle this situation?