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
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.