2 am in the morning

I cry because I have left the bed of a man I have slept with for over 30 years. He doesn't even know I'm gone. That is because of the MSA. His body becomes so heavy I can't get him to move or understand what I am saying most of the time. I had to leave because he was hitting me in the back. MSA can cause him to "act out" what he may be dreaming. Not that he is dreaming he is hitting me, but whatever it is, I am a close target! Too close! I couldn't get him to wake up to explain it to him, so I left and came to write. I know it may make sense to sleep elsewhere, but, " I DON'T WANT TO."

I write, not to evoke sympathy but because I am sad and scared. This disease is robbing the outward emotions from Keith that I so desire. He cares and wants to provide them but can't. I feel so selfish wanting wisdom from him. Wanting problem solving from him. Wanting strength from him. Wanting holding from him.

I can't make it funny anymore.

I'm not sure I should post this because I lack sleep but I know I will. "Why?" I don't know anymore. You all ask how Keith is and he is fighting for his life. The energy it takes to exercise and visit and get through the day is staggering but only those that see it daily would know. Of course, he isn't complaining, but I guess I am aren't I?

Keith just came out and saw me posting but only talked about our dog. That's not normal. Before the disease he would have said, "What's wrong, why are you up?" and we would have talked as long as necessary. It did turn out to be a blessing that our crying dog woke him up. I will tell you why. After he seemed to not care why I was up, I followed him back to the room and confronted him with the situation. (You've got to understand, we've had very few times where we haven't communicated and comforted on another in our marriage so this situation was big.) Anyway, he knew then that something was wrong. We talked and cried (ok, I cried ) He said as only Keith can, "Things are getting serious" and then said, "Don't give up on me." I said I would never give up on him, or on us. He then said some more serious and insightful things to me that I so needed to hear.

Thank you Lord. I think I can sleep now.

Visitors

Just had a great conversation with my sister, Cheri. Of course we're both enjoying the sun even though one of us had to work. =). She deserved a break as she works very hard. Can't wait until we get together again especially since her husband, Stan and she not only offer, but bring food with them and are willing to play Farkle with you know who!

We are excited about Keith's parents coming soon from Minnesota. They should arrive sometime Thursday. If you know anything about the Johnsons, they will be here exactly when they say. It is amazing.

I gotta go. Keith needs the computer so we can watch "Castle" , one of our favorite shows.

Until later,

Oh yea, Keith got an excellent report from his neurologist. Says Keith may outlive him.

Things are good

Sorry about the last downer post but I felt I needed to say it. It helps me.

I can say, however, I did have a wonderful time in California. The weather was about 85 to 95 degrees. At the pool by 8am, took breaks and back to the pool to finish our day. I got plenty of rest and only gained a couple of pounds that are back off already. Sure was some good food there, but it was rather hot so we didn't eat heavy.

I want to thank all of you who called or came and visited Keith. He looked very good when I came home. Well fed too. =)

Pam

It's time

It's time to begin educating about the disease MSA. It's not fun, it's not pretty, but I feel I can't keep what I know to myself because I need and will continue to need your support. If not physically, then in prayers and the hope all of you give Keith and I.

I began by posting a link (I think that's what I did ) on facebook about a couple with living with MSA. Please watch that if possible, difficult as it may be and has been for me.


I watched it about a year ago and only shared it with Keith yesterday. He was sad watching it as am I each time I do. Also if you type in Miracles for MSA on your facebook page you will see other families dealing with MSA. It's a beginning. If you are like me, I have to stay away from the page for the most part though I am constantly drawn to it.

I appreciate any information about MSA you gain.

Now on a lighter note. I told Keith about Clint's suggestion of what to watch that was humorous as was suggested by the wife in the video. So, we turned the channel to what we thought was the old funny sitcom shows. The first thing we heard was a man who had just been told he had cancer and was running through a senario in his mind about dying. We looked at each other and then back to the tv. The next picture we saw was of a woman who had fallen down and couldn't get up. We looked at each other and started laughing. Just what we needed, a commercial that addresses two of probable outcomes of MSA, falling and death. It was ironically funny, but we turned the channel. We are now taking suggestions as what to watch that is funny.

Enough hard stuff for now.

Thanks everyone for being in our lives. We love you. =)