I Am Doing This For Al, My Brother

Tomorrow is officially National Multiple System Atrophy, (M.S.A.) It is a day to make others aware of this rare illness. To help the ill and families get the word out that WE want and WE NEED a cure.

We all know that most likely Al won’t be able to be helped by a cure, BUT we can be very involved. We can help others not to suffer like Al has.  Me as his sister and caregiver, the M.S.A. support groups, my friends here and on Face Book; everyone is doing their part to get the word out.

Since Al won’t be able to go to Day Program tomorrow on the day of awareness he and I decided to start today. He wasn’t feeling well this morning so his photo was not taken in his purple shirt. I did my hair and am wearing purple.

I am asking all of you to go to the M.S.A. site      https://www.facebook.com/Miracles.for.MSA     and light a candle. There is a section there to place Al’s name. If you want to donate to M.S.A. in honor of Al or someone you know with this terrible disease, please do, but no pressure from me.

So here it is, our day here, starting today helping make everyone aware of M.S.A.

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Weekly Photo Challenge, Theme of the Week

catching-fly-12919722I spend a lot of time at home. I admitted yesterday on a post that I wrote that I can get deep into my zone by cleaning. Yes, I know it still sounds just as crazy today as it did yesterday.

But, I will have to let you in on a little secret, I don’t get off on cleaning the entire time I am at home. Sometimes I will bake some cookies and take them in for Al to munch on. But that idea is fading a way. Most times when I go in now and check his drawer of sweets, they are still sitting there.

The day I see that Al has not touched Pop Tarts, one of his favorites, I know the Parkinson’s Disease has truly consumed him. They are still sitting there unopened.

Sometimes I like to get on U Tube and listen to songs. If I think they are pretty awesome, I will transfer them to my web blog, Music That Calms The Soul. There are other times that the stress of Al and the sadness he endures just plain old makes me tired, and I will nap my afternoon a way.

But, now, I have someone else to keep me company. Rhino, my 25 pound cat. He is so fat and I have to say lazy, that if he wants something; it has to come to him within paw’s reach.

Last night he shocked me. I heard my antique bells on the front door. My first thought was that my son’s children had sneaked in to surprise me. I flipped around from my computer desk and lo and behold it was Rhino.

The flies must have really gotten on his cat nerves. He had tried to attack them through the screen. Luckily for me he didn’t indent the screen. He just knocked the front door back a bit and made the bells ring.

Gee, I hope he doesn’t find this entertaining and learn that he can make bells go off and make my own bells go off in my head. It was a quiet night. I had Mash on the television in the background. It was just Rhino and me.

I didn’t realize it but for at least a half an hour I watched and waited for Rhino to do his magic act and let me see him in motion. This is something I don’t see often. He either meows for wanting to be petted, or he is eating.

Even you can get some joy from this. As Ma says in the Golden Girls Sitcom, picture it, 2013, a very quiet house. No noise but the keyboard and Mash. Bells go off and as I flip around I see a 25 pound flying cat doing the disco song to , I’m gonna get you nasty fly.

http://dailypost.wordpress.com,Weekly Photo Challenge ,“postaday″

A Visit With Al

al's birthday partyToday I went to see Al. He was hard to wake up for lunch. It took several times calling him then finally an eye opened. He never even knew I had been sitting there for sometime. We had lunch together and then they weighed him.

He has lost another six pounds. The nurse said this wasn’t bad at all. I tend to disagree with her. How many weeks is he going to continue to lose a few or more pounds a week before they do anything. Or is there anything to do about it.

He only cried once during lunch which I thought was real good. He cried while he told me some new staff was working. They were in his room and the experienced staff were telling him some things so that Al would continue to get good care.

Al said,”They were talking about my past. Everyone wanted to know all the bad stuff about me. They even told them that I wet in my pants.” I explained that they were just informing the new girls of important things about him so he wouldn’t have to stay in wet pants very long.

He didn’t like it so I asked the girls if they could discuss things about him out in the hall where he can’t hear them. Al has always been so sensitive about himself. He isn’t proud that he wets himself or spills food or any other thing that he didn’t used to do.

I wish there was some type of brace to hold Al’s chin or head up. Today I swear his chin was an inch from his plate. He still struggled to get food in his mouth. He ate his whole meal in this position. It makes my neck hurt just seeing his drooped. I guess this is part of the Parkinson’s Disease.

He went out on an outing after lunch so I hope he had a good time. I talked to the waiver people today and the guy told me he was hoping to have all of Al’s data entered by Friday afternoon. I am to call back and check on Friday, late. He also said that once the State received it they legally have 45 days to sign it but it could be back in a week’s time. So I just reminded him that we had been working on this since the beginning of March, so this is why Al is so upset. The guy asked me why I don’t put him on antidepressants. I said, why, he is only sad because he isn’t home yet. Silence, and then call me back Friday. I will for sure, he can bank on it.

I Am Sorry

I just wanted to say I am sorry. Earlier I got weak, and instead of going to God, I went straight for my feelings. I know better, and I don’t know why I didn’t  fight harder. I have had many comments from my last story, Don’t Be Afraid, and I am so thankful for the support that you give me. The hours tick by and night has drawn near, and I have thought about what a poor example I showed in my story. Where is my faith? It is here, but for a moment I let it slip away. I don’t want anyone to be able to say that if this is what Christianity is all about, I will pass. A comment made by one of my friend bloggers was that people sometimes are afraid of the unknown. When I thought about it, she is right. I am used to the Parkinson’s. and all that it brings. It doesn’t mean I like it. It doesn’t mean I don’t wish I could fix it, but she was right. God will bring the right person to me, somehow, some way, he or she will come  and I will have the help that I need. Thank you bloggers for waking me up. Thank you for caring and all the support you offer.