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.


A Different Fair Event

Historic photo of the Pine County Fair

Historic photo of the Pine County Fair (Photo credit: Wikipedia)

Today is the free day of our county fair. Since Al and I had been cooped up within these four walls for a few days because of the heat, I thought he may enjoy getting out for a while. I knew that they were going to  have a special section, that would probably interest him, as it was all antique tractors and old-time farm products.

I asked him after lunch if he wanted to go after he got up from his nap, and he said yes.While Al slept, I cleaned the bathrooms and dusted and swept. This is getting to be a custom for me on Sunday afternoons anymore. Surely, I can find something else to occupy my time besides cleaning!

After he awoke, I got his scooter tore down and into the car. I got some money, for our supper. Why should I cook, when the fair can cook for me? We were already and headed out the door. We got there and there was one handicapped parking spot remaining, and I even think it had my name on it, lol, so I pulled right in. I got Al’s scooter all put back together, double checked to make sure I had not locked my keys in the trunk this time, and off we went.

I walked and he kept up. We did this real good for about ten minutes, then he went limp on me. No more sitting up straight. I kept reminding him to sit up straight, as he came close a few times to running small kids over. The farther we went, the worse it got. I stopped him a couple of times and foolishly explained why he had to sit as straight as he could, knowing inside, it was not his fault, it was the Parkinson’s. Ohhhh, I just want to scream my lungs out at this nasty old Parkinson’s. I think I hate it more than my worst enemy, wait this has become my worst enemy!

I knew he understood why he had to sit up, but let’s face it, if he could, he would. I asked him if he wanted to go home, and he said no. I asked him if he wanted to stop and eat, so he could rest off of the scooter and he  nodded yes. We went to one of the small community food booths that had chairs and benches. Al was able to pull right up to a bench and take three steps from the scooter to a sitting down position.

We were there for about an hour, because being the first day of business, these small places had not organized a pattern yet, so service was very slow. I ran into some old class mates and we mingled for a while, and then finally the food was served.

Do you remember what it was like when your children were small and they started feeding themselves? Remember their messy little faces and fingers? Well, this was Al. He had ordered cheese fries and a cheeseburger, and all the cheese was all over his mouth, chin and fingers. I had no wash cloth with me, but will now put this on my mental list of things I must carry when we are out in public. I got several napkins and cleaned him up after he ate. I think he did enjoy his meal, because not even a mouse, could find a left-over crumb!

So after our tummies were full, we started again around the circle that creates the fair. Since it was free day, we could observe the rides being put together, and I tried playing a game with Al, on what ride might be being put together, but he couldn’t tell, as his face was almost on the handle bars of the scooter. We once again replayed the sit up please game all the way around. By then, he was weak, too weak.

It is hard to judge what Al can handle. At home he sits all the time except meal time, or else he is lying on the living room couch or his bed, so when I see no tears, or hear no bad words, I figure he is having a good day. When I take him out, he has to use his power to make the scooter go, and his mind to direct the scooter. It takes no time at all for Al to be completely drained of energy. I hate not being able to take him anywhere, but I hate it when anything we do wears him out.

I asked him when we had made the second round, if he was ready to go. By then he was all tears as he had run out of strength. He shook his head no. I thought to myself, we can not make it around another time and he doesn’t want to go, so let’s go sit with the seniors who come to the fair to people watch.

On our way to the seating arena, I spot a dairy barn that serves ice-cream. It is Al’s favorite food anymore and so I ask him if he wants a shake. I know he just ate, and he is a diabetic, but with tears and weakness, I say the hell with the diabetes, for one night, and we get him a shake and me a cone.

We go to the sitting area and sit down. Al is trying to get the strength to get the ice-cream in his spoon, and I am debating internally whether to ask him if he wants my help, when up behind Al walks his old boss from his work.

Al had worked for a wonderful christian company for nine years and had the same boss, Scott. When Al saw Scott, he lost control of everything. I had never ever seen tears like this from Al before. Tremors were quadrupled and he could not sit still. I even observed one small spot on his shorts where I believe urine slipped out.

Scott was in awe. I had taken Al there to visit his old work place the first week we came back from Florida. Scott had noticed how big of changes were occurring in Al’s life. Al could no longer even attempt to feed himself, so Scott took the shake from him and fed it to him, while Al cried. Scott kept trying different methods to get Al to calm down, and be able to talk, but nothing worked. After the shake was over, Scott said a prayer there with me for Al. He bade us good night and went on his way, only to come back a minute later and get my phone number, which he entered it in to his cell, so he said he would not lose it.

It was time to go, and getting Al back to the car was a chore in itself, but with God‘s help, we made it. I tore it all apart and got it in the trunk, Al in the car, and we left.

I found out on the way home, that this was another of Al’s goals to do before he passes away, was to see his boss.

I explained to Al that he is dreaming a lot, and I think in his dreams he is having conversations with God and mom, and that although he is ready to die, God may not want him to come home just yet.

Al tells me, he if God loves him, he will take him home.