I started my blog shortly after receiving my diagnosis. I hope my documenting serves as a platform to build upon, as I attempt to communicate knowledge. I am grateful that I am able to maintain positivity, no doubt because of the wonderful understanding support I receive from my loving and caring husband of 51 years….aiming for an eternity together.
From an article about PATIENT ADVOCACY (why it fails)
Parkinson’s is a cruel mistress. As the years go by post diagnosis, we shift from timid ignorance to vocal experience before gradually disappearing again, raging against the dying of the light. It is one of the most brutal ironies that one reaches the greatest understanding of the condition only as one’s ability to communicate that knowledge dwindles to the sound of silence.
………………… Let me personalize this. I have had Parkinson’s for around 13 years. During that time I have witnessed – even been part of – many initiatives aimed at improving quality of life, better understanding the condition and even hastening a cure. Often these initiatives were led by advocates now gone. And as they faded away, so did their ideas.
CASE in POINT… One of the conversation groups for Parkinson’s allows a person to select people to be on their team. The people I selected were the ones who seemed the most upbeat, who offered encouragement or humor. But in a relatively short period of time the tone of some communications have reflected declines… as follows:
……………………………………………………”I know how you feel. We all do. I often feel just like you. Please feel free to contact me anytime you want to talk. You will find that you are very important to us. We really are all we have. Even those of us with loving husbands and families and lots of friends are still lonely and feel isolated. We know that no matter how much we are loved no one can ever know what it’s like to walk in our shoes. There is a dreadful mindset that comes with knowing you will never be better, only worsen; Never knowing when the next slide into the next stage will occur or when the medication will stop working. But then we put our feelings, hurts, fears and dreads on line on this site and we are reminded that we are more than our disease. That we are important even if just to one another. That we are useful. That we can still help others and that where there is life there still is hope. Here you will make friends with people like J—. Isn’t he wonderful? He has gotten me out of some really dark places and he suffers with this disease as well as others often more than I do! You are in the right place Sh—-! Welcome!”
……………………………….”Let’s get to acceptance. We both have a disability, but we can still make a difference in people’s lives. You are out there greeting new people and offering encouragement to those who are gravely ill.
You are doing the Lord’s work. Building up treasure in heaven. You have nothing to fear. You’re on the right path.
Acceptance is where the healing begins. I’ve been burning for almost ten years now. Never ending pain. But helping others heals.
We both have dyskinesia. So be it. The people who care about us accept us as we are.”
……………………………………….”I k ow it sounds crazy but you, St—-, Me— and Ca— are my closest and dearest friends. I love the four of you as if I’ve known you all my life! My husband loves me with all his being but he can’t know what I feel or who I have become, not like you all do. You didn’t know me before, just 2 years ago before the bottom fell out and plunged me from mild early stage to deep mid stage with accompanying complications. I was on fire! Electric! I was beautiful, poised and smart, really popular and very powerful politically! I loved people and I adored kids and they loved me! I was a dancer and a runner. I hosted parties the whole town talked about. I tried to help everyone I knew. I was a good person. My husband and my son were so proud of me! Now I spend my days playing games on my phone, reading email and suffering through the side effects of my medications. I can’t think anymore so reading is difficult. Fr– and I were both avid readers and we have a vast library. I was a deacon and a ministry leader in my church. I haven’t been in a church in over 2 years. My balance is very poor and I fall a lot. Most of my clothes are pull on elastic waist because I have a hard time with buttons. I could go on and on. Do you get what I am saying? I don’t know who I am anymore! My medications make me sicker than my disease! I can’t even laugh anymore. This is no way to live. I hope you were serious when you said you were a good listener!”