Hi everyone!!!!
Maybe some of you who follow this blog are wondering, “Why hasn’t Judy told about climbing the mountain yet?” or “What about ‘da Coat–we hear there are some changes happening? Well, I have no excuse except that it is taking me longer to figure out just what is most important to tell you about and how to go about it. So I’ll try writing about something else. It is no less significant and in many ways of thinking about it, I wish I would not feel so compelled to go where the rest of this writing will lead me to look at and share with you.
If you have read much of my writings before, you probably have concluded that I’m trying to make the best of this situation that I live in with Parkinson’s disease. And as part of that, and as part of who I was for 40 years before I was diagnosed with PD, I am typically a optimistic person (or so I like to think). And for this reason, I believe I intentionally want to write about things that don’t dwell on the ‘dark side’ of PD (I’m getting carried away with the Star Wars theme, just because one person told me I was a Jedi in their way of thinking….see there I go again…the good thinkin’), But even the Jedi’s must face a dark enemy.
I will be the first to tell you that I think I have had many good things come from having Parkinson’s disease (just go back and read some of my posts here, and Sherri’s too to see). And recently I have been involved in an awesome event (More to come on Mt. Washington and The Army of Change, soon…I promise) and the ongoing saga of ‘da Coat that I had and used to bring some personal awareness to others about PD. But even Judy with PD has to face and discuss the stagerring impact that PD can have on one’s life.
So I hope I can express what is on my heart and mind and you not think I’m giving in or giving up. But I sit and remember last Monday afternoon, as I returned from Nashville and a visit to the PD movement disorder doctor I see there twice a year, a phone call I got. A dear man’s sister (the man had PD and was in our local support group) called to tell me her brother had died. She was brief and had to go quickly to phone some others and take some calls. Her brother is Tom. I don’t remember how old he is, but my friend Peggy and I had visited him within the last month in the hospital where he had some gastro-related problems. Not only did he have to suffer from that, he had to suffer severe Parkinson’s symptoms particular to him because he could not keep down his medications. I’m not sure, but I would say his body suffered a set-back from all this and just could not fully recover. When I called to tell Peggy the news of his passing, she told me she had been at the hospital just hours before to visit him. She said his lungs were full of fluid. I’m not sure Parkinson’s killed him, but I have to believe the accumulated toll if it and his other recent medical problems made his body less than adequate to fight increasing medical problems.
As I sit here and think of Tom Smith’s life and his battle with Parkinson’s, I also think of several others in my local support group who have passed on since I have become involved there in the last 6 years. Yes, many of them were elderly. Not all died from direct complications from PD, but some have. I can think of about one a year, out of a group of 50 or so who have PD in our group, who have died. I can think of several who can no longer get out and attempt to come to meetings. And who knows how many are out in the community where I live who live in silence about their PD and how it has changed their lives.
I want to tell you a little bit more about Tom, because… if for no other reason, he had determined deep within his heart that he was not gonna let PD rob him of the joy of life. He proudly told Peggy and I how he had turned a corner with his PD. He called PD ‘the monkey on my back’. Tom always invited everyone in the support group to come out to his place and fish in one of his 3 ponds. I never went fishing at his place, but earlier this summer, Peggy and I ventured out in the beautiful east TN hills to Unicoi and to the restaurant and store Tom had purchased and started as a business to keep him moving and ‘the monkey’ off his back. Tom told us “A year ago I was in the nursing home due to PD and now look at me!” We went into his new restaurant and chatted with him and ordered some food. Tom had already eaten, but he intented to stay with us and share more of the ‘good things’ that were happening. When our food arrived I somehow got the honor of blessing the food. When I said “Amen”, Tom continued and briefly said a few things. I say this being somewhat unsure of the rest of his prayer after hearing him say “God, please don’t let Parkinson’s get my friends, Peggy and Judy, down.” How Peggy and I both kept from filling our plates with tears I will never know. We spoke of his sweet prayer in the car on the way back home.
Tom graciously insisted we follow him over to his place, so being good friends we went. That visit is worth a whole other story. But I’ll just tell you this….when and if I get to that same point in life….oh heck, to be honest, I’d like to have Tom’s attitude now. He was recounting some of his work days, his accomplishments, his hopes and his desire to help others. He also clued us in on a ‘concoction’ he made on his basement that he felt was instrumental in his new effort to keep “that PD monkey” off his back and from keeping him down. And he graciously offered us a few ounces each in a cup from the cupboard upstairs. I only drank it when I saw Peggy give the look of ‘it can’t kill us’ and she downed her dose first. Tom said it was a mix of several fruit juices. He took great delight in sharing it and I was honored to partake, and I was happy that my response of declining ‘seconds’ was not met with dismay!
I know for myself and many others living with PD that we need to revel in the good days. Those days often turn into a few good hours or minutes a day. And it seems that time comes much sooner than we anticipate. It becomes so very hard to reveal in such fleating time on your own. Those times are when we need a ‘lil help from our friends.
I used to throw out this little saying that I thought I had coined….”I will endure for a cure”. In these days following my mother’s death, I have experienced an alarming increase in my ‘off-times’ (when meds just don’t work like they have and the PD becomes a monkey on our back and we shake more or we can hardly move) and I sometimes wonder : “Will I be able to climb that mountain terrain as confidently as Enzo says I can? Will I believe and last till a cure happens?” More days now after 8 years of PD, than ever before ….some doubts slip in and bring me down. But I thank God for a family, and for many friends, and an awesome support group who seem to know just what I need to turn that attitude around!
Besides having that, the greatest thing we can do is to help fund research for a cure. If you want to know how, email us and we would be glad to send you links for online donations or suggestions for other means of support.
Oh, and by the way,…. I made it to the top!!!!!!!!!!!!! 6,288ft high in New Hampshire on a rock hill called MT Washington….with some help from angels and friends on July 31, 2010!
Judy aka in10city
