For Judy (and everyone else too)

Judy,

You asked for an answer to a comment you left on my last post - Jealousy.

"I'm Judy from California. It was comforting to hear the patients point of view. I have MSA with very low blood pressure so I am not able to sit up. I am bed bound with 24 hour caregivers. A friend is typing this comment for me. I am able to eat soft solid foods. I understand Dennis's comments about normal people. I am interested in your other experiences with this disease. How others interpret the illness is often not what I are experiencing. I find this very frustrating. I dislike being told I'm not thirsty when I ask for a drink of water, just because I had some recently. I look forward to a response. Judy"

I can't answer you. I am a carer, and my view-point is that of a loving partner, who does interpret what Dennis is going through. I, too, would feel frustrated if I asked for water and was told I couldn't be thirsty. Perhaps you need to have a conversation with your care-givers. I don't know. I just don't.

There are blogs out there that are told from the MSA point of view. One of my favorite bloggers is Dan - We will go on. His blog is listed on the right side of my blog - blogs I follow. There are others, too, but Dan keeps up with on a very regular basis.

I would also encourage you to visit the yahoo groups at shydrager.yahoogroups.com. Pam does an excellent job of letting carers and patients speak their minds in a safe atmosphere. She also keeps on top of new research and shares openly.


No one person in this world sees the world as any other person. We each have our own perspective on everything and everyone that is around us. Perhaps this is compounded when one person is ill and another is not. I do not know.


What I do know is that Dennis knows that I love him with all my heart, and would do anything and everything for him. I know that I will only let loving and competent people work with him. I know that Dennis adores me, and loves me, even when we are frustrated with each other. I know that he wants a new brain, and God knows that I wish I could give him that.


You are more than welcome to read my blog at anytime, Judy. But it will always be written from my point-of-view. It's the only perspective that I have.


Until later,
Ann and Dennis