What did you say?

I know I have not posted for a while. As I said previously, without making this just a daily or weekly report of the disease, I just cannot be motivated to write. Most of the posts prior were "of the moment" type. I am still wrestling with this. Here are some thoughts today however.

Most, if not all of you reading this can turn to someone else in the room and make a comment on it. If you want to send me your thoughts on this post, you can type a comment. When your phone rings, you answer it and have a conversation if it is someone you want to talk to. Now, imagine none of that were possible.

That is where my wife is now. I tell her that her world is slowly getting smaller. It started by her not being able to drive where she wanted. Then it became so she could not walk where she wanted. That restricts her physically. Slowly, her ability to talk is being taken away. I have said "excuse me", "what did you say", or just "huh" 8,468 times in the past month. I know it annoys both of us.

What does it mean when you can't speak? You can't let people know what you are thinking. There are schools of thought that profess speech as one of the defining features of our humanity. She can make known what she needs, and most of her wants; but the act of discussing what she feels or being able to hold a conversation is gone. Like I said, she lives in a little world. People don't call her because they cannot understand her on the phone. People don't talk to her because they cannot understand her responses. When we go to the doctor now, they end up speaking to me because I am usually translating after the first few words anyway.

So, modern technology has given us many other ways of communicating - right? Texting, IMing, email, blogging, etc. That has helped some, and still is a bit. But, try doing any of those things when your tremors are so bad that you cannot hit the keys. It can take her two to three minutes to type a text with one sentence - and then it will be mostly mispelled words. Emails are OK, but for her to answer one can take all evening and would fail a second grade writing class.

I can only experience this through her frustration. I feel so bad for her. I have tried to think of anything that might help, but I am at a loss. I see her world slowly (or actually to damn quickly) closing in around her. Not being able to communicate with family and friends is horrible for her. We continue to do what we can. She continues to do less and less.