Three Good Days, M.S.A.
Alhas had three good days, but as usual it comes to a halt. I have to believe it is the M.S.A. that…
Al has had three good days, but as usual it comes to a halt. I have to believe it is the M.S.A. that causes this. Human minds are doing all possible to slow this terrible illness down. There ideas work for a few days and then it stops.
Last night when he came home from Day Program his communication book said that he had tremors most of the afternoon and had napped. The tremors continued throughout the evening.
He ate 50% of his supper. When I put him to bed his legs were frozen bad. He could not move his legs at all. I sort of had to tug and pull to get him into bed. I noticed he was slightly tipsy when I stood him up.
This morning he was tipsy too. Not like drunk but definitely not steady. He swayed to the side some. I noticed labored breathing from him no matter what he was doing. Just to move was a chore for his weak body.
During breakfast he did eat 100% but he stared quite a bit. At first I thought he was having another seizure, but it wasn’t exactly like a seizure. He would hold a piece of egg in his hand for at least a minute staring straight ahead, doing nothing. Eventually he would eat it.
I would say it was more like the body had lost touch with all thought process and Al was patiently or maybe even unaware of what was happening. It took a while but he did finish. After breakfast I washed him up and once again heard the labored breathing as I got him dressed and his brief changed.
He wanted to sit in the living room in his wheelchair. He knew that the Hospice nurse would be coming soon. When she arrived, Al’s arms were dangling over the side of his chair. His voice had become terribly soft and quiet. The staring or non-movement was there for her to see.
She checked his vitals as usual. She said his blood pressure was low, at least for his normal readings. She asked him questions, but when she was listening to his heart, she kept at it for a few minutes. Usually she listens and says everything is alright. I felt anxious and nervous. She was taking too long.
Afterwards I went back inside and she was typing on her computer. She looked at me and mouthed something, but I couldn’t understand her. She then came to me and told me to keep an eye on Al today. She didn’t think he should be going out of the house.
My breathing became a little heavier as I asked her, ” What is it?”
She said that his heart is stopping off and on. That I should watch for his breathing as his heart was stopping for about 15 seconds. Of course this scared me. Al didn’t understand at all. He knew we were going to Wal-Mart today. I told him maybe we would go later depending on how he felt.
It is weird that Al doesn’t notice much about what his body is or isn’t doing. He is evidently used to what is going on in the inside. The nurse said it wasn’t bad as far as how long it is stopping but to me this is just another slap that things are continuing to move downward, even though on the outside he had three good days.
I thought of how my sick brother seemed so good and the green bug I had just photoed outside. Life is still moving all around us, but you have to look deep inside to see what is truly happening.
This has enabled him to eat and drink by himself. His chatter is constant and he smiles more. I think he has more pride in the fact he can do a few things for himself again.
Not being able to feed himself I notice this is most humiliating to him. He can cry easier at meals than any other time.
I wish, let’s say I am always wanting more. I wish that he could stand longer. He can not. In fact, I think he can stand less. The new medication has helped in the area of tremors and also in less sweating.
He sweats when he has to stand to be changed or transferred. His labored breathing is still heard when he has body activity. The side effects that I think are from the medication are more confusion. He is sleepy more often than not. He stutters quite a bit now, but at least, thank God his tremors have lessened.
All of you that have prayed over Al for so many months, God has been listening and has answered. I will not get my hopes super high. I realize that medications only last so long before the body gets immune to them. I will keep my hope at bay and within reason. Sort of like that game at the fair where you ring the bell with the big pallet. Oh, it is called test your strength. I have never played it. I don’t want to have some gadget tell me I am weaker than I think. Here is a video of the game being played I am talking about.
Have you ever seen hands tremoring so bad they can’t be used? Here is a tiny video of this happening. This is what Al’s hands were doing until this week.
So all I wish for now is the medication to last for a while before we have to start increases. I am afraid if there is an increase Al will end up being bed bound.
I trained someone this morning for the coming Wednesday. I want to attend a very important auction and I could not take him. I felt like a real teacher. This will be Al’s first time staying with a caregiver in his position he is in now. She is very nice. Al asked all sorts of questions. I could tell he was not as much interested in who she was about but if I was coming back.
So thank-you everyone for the constant prayers. I really appreciate them.