When I first started writing these articles back in April, my goal was to make as many people aware of Multiple System Atrophy (MSA) as I possibly could. With help from my dear friend, Frank DeMartini, it is working.
I was enjoying dinner with John, Jo and Susan the other evening at Mimi’s, one of our regular restaurants, when a woman I didn’t recognize approached the table. She asked if I was the man that wrote the column about MSA. I said that I was, and she took a minute to compose herself and told me her story.
Her name was Janet Monk. Through tears, she told us that her friend, Dreama, who lived inRochester,New York, has just passed away from MSA. Since Janet lived so far away, she had not able to be there with her friend, and Dreama’s husband had not really gone into the details of what life with MSA was like, so she was not aware of what her friend had suffered through. Janet was so appreciative of my column so that others can get a first hand view of what each of us MSA survivors live with each day.
Janet said that Dreama was confined to a wheelchair and paralysis had set in. She needed assistance with all of her everyday activities. Apparently Dreama had come down with the symptoms of a cold, and it turned into pneumonia. As I had written earlier, pneumonia is the worst possible outcome. Due to the damage MSA causes to our muscular system, MSA patients, along with having difficulty swallowing and other actions your body uses muscles for, we do not have the muscle strength to cough up the mucus that is associated with any type of respiratory illness. This is the reason most MSA patients die from respiratory distress. Janet was very sad losing her friend, but was thankful that her friend was no longer suffering and being a Christian, knows that she will see her again.
I want to let Janet know that her belief is correct. Dreama is in a much better place. Although I love my family more than anything in the word, there are days, which seem to becoming more often, that I wish for the same relief. I wish it was over. I long for the place Pastor Tom told me that does not have seven things. I cannot even remember the entire seven, but I hold on to the ones that are – No more pain or sickness. I know that is the place that every MSA patient longs for. Dreama is now in her perfect body with no more pain and suffering. She loves all of you that supported her through her illness, and is watching over all of you.
There are weeks when it is very difficult for me to write these stories due to the pain associated with this disease. I also seem to find that my short term memory is getting much worse. Dr. Williams does some testing about every six months or so to measure for any brain function changes. Her last test indicated that it seems to be getting more difficult for me to remember things. I did not agree with her at the time. But it does now seem like I have trouble remembering new things. I asked Susan the other day if she noticed my memory getting worse, and she answered yes. She told me that I will ask her a question and five minutes later, I will ask her again. She just answers me again. I wonder if maybe I do it often and that would explain why sometimes she just takes a deep breath before answering me. She says she doesn’t mind and knows I have no control over it, but it has to be frustrating for her just the same. So I guess before I assume she is answering me with an attitude, I should check to see if maybe I have asked her the question more than once before. Fortunately, unlike Alzheimer’s, what I know, I know. I won’t forget those things. I am just learning ways to retain new information. I guess it’s a lesson in teaching old dogs new tricks. But, when someone shares their story with me and tells me that my articles have made a difference, it makes it all worthwhile. Thanks Janet!
Well, I am facing a lot of transitions in my life coming up soon. We have sold our house, so we will be moving from a place we have called home for about 13 years. Susan wants to get something smaller, less to take care of with very little grass to cut. I know we have accumulated tons of stuff, (mostly mine) so not sure how that is going to pan out. I see another garage sale in my future! I love going to garage sales, but I love having them more. InFairbornyou must have a permit to have a sale, so Susan has told the ladies in Finance not sell me a permit without checking with her first. I don’t’ know why she would be so concerned. She swears that I would sell everything in the house if she didn’t keep an eye on me, and she is right. She did come home one time to find that I had sold our living room furniture and television. Boy was I in trouble!
Another transition I am facing is that I am winding down the days to the end of my term on Council. I keep saying it is only a contract. I took an oath or contract to represent the citizens for a maximum of two terms, or eight years, and I am coming to the end of that contract. But deep inside it is more than that for me. Being an elected official was something I would have never in my wildest dreams thought I would have ever attained. Growing up, I didn’t pay a whole lot of attention to school finding it was much more fun to cut class and ride my bike through the school halls with my friend Pat. I can remember just like it was yesterday hearing Mr. Vita coming over the PA system stating, “Mr. Cervone and Mr. Fusco, please leave the building!” I don’t have an extensive education and didn’t retire from the military as other’s serving on council have. I was just a normal blue collar worker who faced some of the same challenges that other citizens in the community faced. We lived paycheck to paycheck and tried to raise our families the best we knew how. I tried to help others when I could. I ran for Council with the intention of representing everyone equally, and I believe I have done that. I hope along the way I have made great friends and made life a little easier for everyone I touched. So with that said, I only have two full council meetings to complete and will be “Old Business” on the third meeting before the new council takes over. I admit, I am sad to be leaving, but I have high hopes that those on the new council will listen to the citizens of Fairborn and make their decisions on what the citizens want, not necessarily what staff recommends.
I want to share a verse Pastor Clayton read today. It comes from Proverbs 10:9 – The man of integrity walks securely, but he who takes crooked paths will be found out. I hope that I follow that biblical wisdom, and hope you do too!
Remember you can still watch the Council meetings live (or recorded) at: http://fairborn.granicus.com/ViewPublisher.php?view_id=2
To donate money to help find a cure for MSA, please send you tax deductible donations to:
Hope for MSA
c/o Greene Giving
25 Greene Street
Xenia, Ohio 45385
Thanks for your support for MSA patients everywhere!