Swallow Test


English: Question marks with transparent backg...

I received a phone call earlier today. A staff member was letting me know that the appointment for Al’s swallow test is January 25, 9:30 am. She said for me to meet her and Al at the hospital.

I said thank-you and hung up. I jotted down the time and then I sat here wondering why the hospital? What kind of test is this? What are they going to do to him that he has to go to the hospital?

Does anyone know what is going to happen during this test? Will Al feel any discomfort?

Just Me, Nothing More


English: The Woodside Hotel and the big tree

He is behind the tree, that big one over on Clark Street, the one that has a zillion leaves flowing from each tiny branch, yes that is the one, you remember. He is standing underneath of it, hiding in the flowing shadows.

He is waiting for just one to walk by. The one who has no confidence, the one who walks this earth afraid to step forward. Have you seen him or her? Do you recognize the person that I am talking about? No, yes? Well he knows, he always knows.

His nose picks out the sense of fear, scared, weak, shy. Yes, he is waiting to pounce, to take what little you have left. Your entire life having fought to be the one that you were meant to be, but have not been able to have enough belief or strength in yourself to get to the point, that HE will not be hiding behind the shadows, ready to jump out at you, and scare you to death.

Did someone ever tell you that you were dumb, stupid, worthless, or unwanted? Did that one superior ever thump you on the head, knock you off of your feet, break a tooth out?

Did you ever sit in your bedroom on your bed, in the dark hours, and cry yourself to sleep, until morning finally broke through your windows, letting you know that this is a new day, that today you can have new hope?

Did you ever try your hardest to be picked, to be chosen, to have your name called in a school game out on the play ground, but no matter how you smiled, or begged, or kept still, your name was always called last? Did you ever wish that you belonged to that certain group, wore those clothes with the expensive name tag on the back, have those shoes with the familiar name on the side?

When we are children, we are innocent, and believe that everyone loves us, that we are precious to family, and when we go to school, we begin to see the differences between us and them? You begin to notice their style, their laughter, their popularity.

When you become a teenager, you have even more problems with fitting in. You discover that your friends have girlfriends or boyfriends, and you still have no one. The school dance comes around, and you have no one to ask.

It can be a rough life to live as an adult, and we carry with us many of the hurtful things that were said or done to us from our youth and childhood. Some of us have families or people who have spent time with us and have helped us get over the hump of youth to adulthood, and others have fallen by the tracks, seeming hard to stand, only able to still crawl.

We all need a helping hand, someone who loves us for who we are, not what we wear, not how many friends we have, or who we are married to. We need to know that each of us is worthy of obtaining anything in this world that we so desire.

Thank goodness there is God, a superior who loves us in spite of all of our sins. I know that there are a lot of people in the world who do not believe in God, and this is sad to me, but I can not live those lives, but I can pray for lost life, that the soul will turn one day to the warmth of God and reach up to the hands that are so patiently waiting for them.

Remember the big tree over on Clark Street, the many leaves that form dark shadows in the night? A place where evil and bad things are waiting for someone to come by, so that he can reach out and snatch that soul? His nose can sense all weakness in the world.

I am not trying to preach, and I am not trying to place fear in anyone. I just want to give food for thought here. I have been on that sidewalk, edging closer to where he is standing, but God reached out and grabbed me, and placed me on another side walk, closer to home, keeping me safe with his love. I am so thankful that I have been lifted by the hands of a power, much greater than even what I think I have. I am a common soul, nothing special, not rich, don’t live in a fancy home, don’t have name brand clothes, but I am blessed, truly blessed.

She Says, He Cries, I Think


US Navy 100607-N-6410J-036 Physical therapist ...

I hear my voice saying calmly, it is alright, we will blame it on the dementia. You didn’t mean to, it is not your fault, but on the inside I am yelling at this PD. Two good days in a row, hardly any tremors, and this is including the day today.

The therapist comes and gives Al exercises to be able to strengthen his arms, so the goal of lifting the full glass up to his lips, instead of lowering his head to the glass, might be accomplished. While the therapist was here, she was telling me that Al is improving, that he has made progress in this one week they have been here.

Inside of me, I am saying show me where? Show me where the tremors are laid back for days. Show me where he did quit soaking the bed? Tell me that now I will not have to cut food up nor feed him. Tell me he can walk better than yesterday.

As the therapist was using plastic, empty cones, laying them on the floor and asking Al to pick them up, which he did, she looks at me with a big smile, and says see? he can do it. I said, yes, he can, the glass is empty. She looked at me and said nothing.

The therapist also said that he had a low-grade fever, and I have  heard Al complain the past two days of having a dry mouth, even though he is a huge drinker of water. I told the nurse who came this afternoon what the therapist had said, so she listened to his lungs and took his temperature. Now the lungs are clear, and the temperature is only 97. I see nothing wrong, she says. I mentioned that all morning Al’s voice was raspy and I could hear something rattling when he talked. She advised me to keep an eye on it, but she thought nothing was wrong.

My coffee pot went on the blink this morning right after making me my coffee, so I have to consider this an emergency, and with the therapist suggesting to buy Al a two-handled cup, I said we will get it today, because I must have my coffee.

We go to Wal-Mart and I buy us some lunch at the inside restaurant, Sub-Way, then after done, we go to the grocery aisles and get him some orange juice for breakfast, since he was out. Next, we went to the small appliance department  and I saw the coffee maker that I had at home, but guess what, the only coffee makers they had on the shelves were the expensive ones. I glanced around to see if there were any employees around, and as usual, there was not.

I asked Al if he would like to go over to the toy aisle and pick out a cheap car, that cheap is what he could afford this week after buying an expensive car last week. I asked him if he remembered how to get to that department, and he nodded yes to both questions.

He left on his scooter and I grabbed the first employee walking by, and I guess I was not very nice, because I asked her why is it every time I come here to get something much-needed, all the shelves are empty except the expensive ones. I reminded her that with the economy being so bad, they needed to keep the shelves stocked with the common priced ones. She didn’t deserve it, and why I acted that way, I am not sure, but she did go back to the back and look but came out empty-handed.

I did not want to tackle getting Al in and out of the car more than I had to, so I picked out one of the brands I like that was common priced, but it had no timer on it, so now I have to start it in the morning instead of waking up to heavenly coffee. Oh well, it won’t kill me, but it was a nice luxury for me.

I then went over to where Al was and he had a pile of cheap cars in his cart. I think my eyes bugged out, there were so many. I explained that we could not have more than one today, and he said he didn’t know that, that he had heard me say cheap, which each one was $3.59, not bad price, but over $.99, but when you add up several, it cost a lot! He started crying saying he had messed up again,and that his brain is so confused. I told him to pick out the coolest one of all, and he could have that one, but needed to put the rest back, which he did, with no fuss. He kept telling me he just didn’t understand, and I believe him, other wise he would have been throwing a fit to keep all of them, but he did not do that.

So tonight during supper, we were both eating and he tells me the bucket is missing. I ask him what bucket and he says the grey bucket. My mind is going to the movie I just watched yesterday, the Bucket List, and he says it is missing. I question him some more, and then I got it. He was saying to me that the bucket for the commode was missing.

All of a sudden I put my fork down, as I was no longer hungry, because my mind was picturing the mess I was in for when I went in to his bedroom. I went in there and saw no urine on the floor and sighed a sigh of relief. I lifted up the lid, and the lid was on the bucket, but the lid was full of pee. He had peed on the lid thinking it was the bucket.

When he finished his last bite, I told him the bucket was there, and he argued no it was not, and so I took him in and showed him the urine on the lid, and he said that I had placed the bucket back for him,and asked who’s pee was that. I told him that the lid was on top of the bucket and he had accidentally peed on the lid instead of taking the lid off peeing in the bucket. He cried again, and asked me what is wrong with his brain, that it is all messed up. I told him not to worry, that it was an accident, and I would clean it up. He walked out of his room crying and asking himself why he can’t remember things and why he screws up all the time, and then he looked back at me with big tears, and said, I really try Terry, I really do try.

I started crying immediately. My heart was breaking. I felt his pain and embarrassment. On one hand you have therapists and nurses saying he is improving, but in other areas they are deteriorating. Dementia is moving in faster and faster, he could pick up an empty, plastic cone with the therapist, but at supper he could not pick up a plastic half-filled glass. He cries wanting to know why he is messed up, and he didn’t realize prices at the stores.

I don’t know how to feel anymore, I feel confused. I tell myself to get hard-hearted, but I struggle with that. Nurses and doctors say he is in the beginning stages of five, the final stage. The nurse tells me today, to expect things to move quicker now, and that tremors can almost disappear in the fifth stage. All I know is Al is sick, and his body is changing and so is his mind, and as bad as I want to believe that he is improving, I only see him getting worse, when you look at the whole picture.

What We Think We Know


You have heard the saying before, I am sure, that if you have not experienced it, you don’t know what I am talking about? I think this refers to me last night. Al is slowing down so quickly. I see him struggle to get out of the car or off the couch. Our bodies, when we want to move, we just “get er done”! When Al wants to  move, it takes much time to get the brain to tell the body part what to do, then the brain has to register what the movement is, and then the body tries very hard to do the action. Let me tell you, with great pride and stubbornness, it can be done, but it can take several minutes to make one action complete!

Here is a good example at our home. We go to the grocery store to get the much-needed foods, mainly getting Al’s desires. As I don’t want him to lose anymore weight, I give into his fantasies of his taste buds. I pay for the groceries, and I load them into the car, and I have this done while I am waiting for Al to still get into the front seat. We drive home, and I get out of the car, and unlock the house, and carry in all the groceries, and still wait for Al to get out of the seat.

Can you picture now how long it takes the brain and the body to join together in thought and get moving? The frustrations that he feels, the humilites that follow him when others are present. I truly believe that this is the major reason that Al gets so nervous and stressed out when we are in public. He is overly concerned about what others are saying, although I do believe that most do not pay attention to him, it is Al who pays attention to his own self. He forgets how to use the levers on the scooter and ends up crying, making me wish we would not have went out.

Then you have the other side of the quarter. Al wants to continue to go to outings, and wants to live like he no longer had Parkinson’s. You know within your heart, it is going to not be a happy experience for him, but you can not take a way the desires  he has, just because you know the better part of the outcome.

I took Al to a car show this past weekend, and he did fairly well. We took his scooter, and it was held under the open skies, so there were no boundaries for him to bump into. I have had to change myself, in the way that I was brought up. Don’t talk to strangers, don’t interrupt another person’s conversation. Don’t be a loud mouth. Use your manners we taught you. When I stuck the key in to give power to the scooter, I also gave power to let Al be Al. He smiled immediately, for one he was going to look at antique cars but the most important thing, I believe he smiled about was freedom.

This freedom gave him power, power that he used to have to make decisions for himself. He went to each car, and looked it over. Every single person he saw, he scooted his way to them, and started carrying on conversations as if he and they were old-time buddies. He was having a grand time. It was not a huge car show, so I stayed in the background with people who I knew, and just kept both eyes on him.

It warmed my heart, and I even over looked the people who wondered what he was all about and who was this person coming their way. He finally did come back, his lips were quivering, his body filled with so much sweat from the work of making the scooter go. This was a lot of decisions for him. Who was he going to talk to , what was he going to say, which way was he going to make the scooter go.

He was very tired and he wanted to go home. He could not get out of the scooter because he had used up all of his energy on his journey of independence. He needed help to also get into the car, but in his eyes, and also mine, it was worth every second to see him having time to be who he used to be.

This is what you lose when you gain Parkinson’s. A huge part of your personality and what you represent here on earth as a whole.  The whole life of a Parkinson’s patient turns into a live nightmare, as you continue to try to live and breathe air.

Last night before we retired to our bedrooms, I saw him struggling so hard to get off of the couch, that I walked over and for one of those few times, I did offer to help him get up. He had been struggling long enough, that he didn’t hesitate my offer. When he finally worked his body to the edge of the couch, he held out his hand for me to help get him in the standing position. I gave him a gently tug, and he came up.

Without me living what he is living, I can not fully understand the body he lives in, and I automatically let loose of him once he was standing. I only think I know what he is going through, other wise, I would not have let go, and for this mistake he didn’t stop moving, he tumbled on over, once I stood him up. I felt so bad for my mistake and kicked my own butt for not thinking. I caught him before he hit the floor, and I apologized to him for having the strength of THE HULK, hoping to get a laugh or smile out of him, but it didn’t work. When I looked into his eyes, I saw fear, fear of being out of control and fear of wondering where he was going to be landing.

I am trying harder now to realize I don’t know Parkinson’s. I only google it, listen to doctor’s words, and watch Al. I am not going to beat myself up for this lack of thought process, but I did learn to be more cautious, and realize I can not know what others are living or thinking, until I have lived it myself also.

We reach our hearts out

And offer our help to

Be a friend and lend a hand

Only finding out that we are

Nothing but grains of sand

In this vast world and land

But we must be loving

And children of God

We continue our work

To  show that we care

To allow them to live and be willing to dare

To live and to love and to be

Course of impulses between the brain and the body

Course of impulses between the brain and the body (Photo credit: Wikipedia)

who they are

We can not dismiss them as the weak and the sick

For it could be us, walking on the end of that stick.