Multiple System Atrophy, Leukemia and Parkinson’s Disease

Ever since I received my diagnosis of Familial Tremors, I have thought back to my father, brother, uncle, my father’s mother and her sister. There has to be some connection right?

Books used to say Parkinson’s wasn’t hereditary; but I beg to differ. My parents brother, me  and uncle all lived on the same property. They eventually built a new house down the road with the same environment. We all lived surrounded by trees, cornfields, and electrical towers.

Don’t you find it mighty strange that a disease like Leukemia would hit 2 people within a year of each other? Doesn’t it seem very likely that since my dad, his mother, her sister, Al and myself all have Parkinson’s Disease? Even stranger is my father had Parkinson’s and Multiple Myaloma and Leukemia; all at the same time.

I did some research this evening. I found some things but not much. I would very much like your thoughts or input on this topic.

What I found online is; and if you are interested; please take the time to click on the links and read.







Picture And Write It, Prompt #25

She was on her way home. The trip had been exhausting. She had met with all family members, some of them she didn’t know or remember. She had just laid her father to rest, in his home town. She had been flying back and forth to visit with him, and to deal with doctors and medications. She was his POA. He had been suffering with Leukemia for a little over a year. Each time she went to visit, she noticed slight changes in his body. The slow movement, the quietness, that once, used to be full of laughter. She was helpless in every way, other than letting him know that she loved him, and making sure he was comforted and cared for. She would take little treats to him, each time. She hoped that these small trinkets would heal her from her guilt, that she carried within, from not living closer to him. She had moved over five years ago, to take a better paying job. He had been very upset about it, as they both knew she was his favorite daughter. Her last visit had been spent with not leaving his side. Hanging on to every word he whispered to her. Giving him sips of water, and feeding him whatever he would agree to eat. He had lost so much weight, as his hunger diminished. He looked ten years older than he was. She laid on his bed, next to him, and held his hand, as God came down to take him home. Tears welled up in her eyes, as she sat in her seat on the plane and went over the last two weeks. She would love her father until she could no longer feel love. She didn’t realize her tears were falling, but her seat neighbor did. The lady who was sitting beside her noticed her tears and heard her soft cries. She reached out and laid her hand over her hand, and gave it a gentle squeeze. She patted her own shoulder and motioned for her to rest her head against her shoulder. Here the daughter weeped and began her healing journey.



Our Afternoon Out

A father and son silhouetted on the front at S...

A father and son silhouetted on the front at Southwold (Photo credit: Wikipedia)

I thought it was going to be a bad time. It was after lunch, and near nap time, and I wanted to interrupt it. I needed to go to one more store, and I really hated to wait until tomorrow, since I want to stay home and clean house, do laundry, and start on any food prep I can do ahead for his party. He wasn’t smiling, but he wasn’t crying either, so I had no signal as to what I was in for. We went to one store and looked around. He rode the scooter, and I walked, using his cane. Actually, that cane was pretty nice. It gave me something to lean on, and hurt my back less, but I am not ready to get too used to that tool yet in my life.They didn’t have what I needed, but I did find a pretty blue butterfly chime. It is on a spring, so any little wind will make it wiggle and force the chimes to sound. Half way down the chimes is a clear, crystal ball, that the chimes can bump into. I love butterflies, and I love the vibrant, deep blues, so I had to have it since it was in my price range. He did pretty good going through the store isles today. He is beginning to recognize how far in advance to turn the wheels, keeping him from bumping into the products on the shelves. We got back in our car and drove to the other end of town. I knew I was pushing my luck, as it was definitely his nap time now, but I asked him if he minded that we go to one more place, and he nodded his head that it was alright. I was looking for closet doors for his bedroom. His doors have mirrors in them, and he had fallen into one of the doors, shattering the mirror, and fortunately, he was not injured, just his pride. We went into the store, and thank goodness there was another scooter for his use. He climbed on and we took off down the rows of items, calling  out to us to buy them. Back in the door section, they carried the same mirror door, but you had to buy the whole set, which upsets me, as this is a money issue for the store. I only needed one, and I wasn’t going to spend the mega dollars on the whole set. I looked at wooden doors, that would fit in his gliders at home, and was told, I would need to measure the whole closet opening. I had only measured the doors. This ended up being a wasted trip, except the fact, that I had purchased my chime. I was proud of Al for not being upset with me taking him out during nap time, so I offered to stop at a restaurant to get him his favorite drink, a chocolate shake. He likes ice cream, but shakes are his best. I didn’t get a smile, but I did get a nod of agreement. We got him situated in the front seat of the car, we both buckled up, rolled back the sun roof, rolled down the windows, and off we went, me singing to the oldies, and him trying to click his fingers together to the music. I pretended not to notice his struggle as he tried to get those fingers to work. I just kept on singing. A beach boy’s song came on that he liked, and I could see a slight tap of his one better leg tapping lightly on the floor. The trip was not wasted. I had found something to deter his mind from what ever sadness has been plaguing him today. We went in and got his shake, and I got my diet coke, and I sipped mine and he gulped his. I was wondering if he was getting a head ache from the coldness and drinking so fast, but he said nothing. As each of us were people watching, I looked at him when he wasn’t looking, and I almost choked on my drink, as my father’s vision came smacking me right in the face. The last four months of our dad’s leukemia, his facial expressions changed so much. He stood like Al stands. Weak and slanted to the side. The underneath of dad’s eyes had drooped permanently, and you could see the blood shot in his eyes. I don’t know if it was from the illness of the leukemia or from crying. My father cried a lot the last four months. He knew he was going to die. As I looked at Al, I could see the same droopiness in the eyes, and the same redness also. Dad and Al look very much alike. Both have wavy white hair, and thick. Both have almost identical chins, nose, and even the same style of glasses. It was like looking at my father near his day of departure. Al was complaining a little bit at the restaurant about chest pains. I glanced at his finger nails and noticed some graying. His nails do this quite a bit. They will turn gray and then back to normal, a circulation problem. I can tell that God is with me at all times, because with no hesitation, I grabbed my brother’s fingers, and prayed right there for God to keep him with me. Please don’t take him until after his wonderful birthday party. I know I have no right to ask this, but I want Al to have lots of smiles and attention that day, so if God was thinking about it, please delay for a few more days. Al’s birthday is tomorrow, the third, but the party is on Saturday, the fifth. I have had comments made to me this week, that they are noticing he is losing weight. As I watched him , I could see the bones in his fingers and in  his hands were more prominent. He used to weigh 295 when he was diagnosed with Parkinson’s and dementia, and the last visit at the doctor, he weighed 254. I am praying that at his blood work next week, he has not lost weight, or maybe only a pound or two. Dad weighed 205 when he was diagnosed with leukemia, and two days before he left, he weighed 145. So as I sat and watched him enjoying watching other people, I grew sad. I had been made gently aware by God that my brother is slowly slipping away from me. I kept strong, I let no tears fall as I sat there, but seeing dad through Al, was a wake up call to me. I feel as if God is preparing me once again for a new stage in this disease, and I better start thanking God for every day Al and I have together. Please don’t get me wrong. I am not saying Al is leaving me tomorrow, but the wake up from God was an awareness call. Things are changing, get yourself prepared. He and I had finished not only our drinks but also watching people. I asked him if he was ready to go, and he nodded his familiar yes. He has not spoken hardly now in two days. He looks sad, or not here. I can not explain it. The peace that he had for those few days was a different kind of look with a genuine smile. None of that is here for now. We are home, and he went immediately to take his nap. I thanked him for being patient and letting me go to the stores.