Army Tales are YOUR stories and experiences that you would like to share with others to show that no one has to be alone in this fight. Our tribe can empower and inform one another, in order to live the most fulfilling lives possible.
February 18, 2012
My story I am sure, is not much different than any other PD patient. Roughly five years ago, I noticed a slow precise movement when I ate. It was as if I was afraid that my food was going to fall off my fork. Coupled with the equally slow movement in my arms and legs especially towards the end of the day. Being a mailman this rigidity/fatigue made both the handling and delivery of mail very difficult. A trip to my Primary Care Physician was immediate and his comment after a brief but concise battery of tests was ”have you ever heard of Parkinsons”. To the reference books I went reading up on the disease and checking off got that, got that and even that. This quickly followed a visit to my Neurologist to confirm what I believed inevitable. The words “you have Young Onset Parkinsons” echoed in my ears and pierced through my inner most being.
My initial response was the obvious anger which lasted briefly. This was immediately followed by the question “what do I do now”?
After reading just about everything I could get my hands on pertaining to Parkinsons and talking to people with Parkinsons or who knew of people with Parkinsons the answers started becoming clear. A positive attitude was a major attribute in every person who had accepted their diagnosis and had quality of life. They along with myself had learned to accentuate the positive and rid themselves of a negative thought process. My rather hectic lifestyle slowed as I observed life around me and began to appreciate the gift of life that God had set before me which I held obscured prior to my diagnosis. Every day became so full of meaning and purpose no matter how hard it was to get to my feet. Perhaps the most amazing thing to me following my diagnosis was the caliber of friends and advocates I continue to meet on this journey. Just as family, always there with comforting words of encouragement and support. I needed to be a part of this movement, an army of warriors united in the fight for a cure. I reached out to the Brian Grant Foundation and was immediately welcomed with open arms. Their mission, their focus and their battle has become mine as well.
Our first event together is April 29th, 2012 at beautiful Washington Park in Albany, New York.
February 15, 2012
PD has made me slow down and sympathize with others who suffer from any debilitating illness. I want them to fell heard and want to assist them anyway I can. What helps you Power Forward? The love I had for my dad and how being humbled by such a debilitating disease slowed us down so that we could love quietly, find solutions and help others. What advice would you give someone in your shoes? Move slowly, learn everything you can and find support. When my dad was diagnosed it was a “new” disease. Through trial-and-error I found answers and support. Live one day-at-a-time.
In what ways do you help the one you honor Power Forward? With my dad I tackled each hurdle as it presented itself. We asked a lot of questions and reached out to others for supports. I first learned of Parkinson’s disease when my Father, Richard Flora, was diagnosed with early onset Parkinson’s in 1995. He was 54 at the time. My father was always the life of the party, and full of drive and passion. The progression of PD slowly stole the drive and passion from him. Like everything else in his life, my father attacked the disease with gusto. I did what he taught me to do – jump in with both feet. We saw the best doctors and continually worked on his medications to give him the best quality of life possible. My father lost his battle with Parkinson’s in 2009. Those last 14 years were very difficult on him and on me, but I wouldn’t change it for a minute. Our relationship was never stronger, and my father made some wonderful friendships along the way. He lived long enough to see both of his daughters marry, and to meet all of his seven grandchildren. Even though he left us at 64, he led a fulfilling life. I chose to donate the proceeds from my annual Thanksgiving Spaghetti Feed to Grant’s Army this year to honor my father’s legacy. Like Brian Grant, my father attacked life and never gave up.
Power Forward!
December 19, 2011
My mom dedicated a good part of her life to raising my brother and I. She’s a spiritual woman, an incredible listener and one of the strongest people I know. Her story inspires, her every day amazes, her love overwhelms.
Mom was diagnosed with Parkinson’s almost 3 years ago. She spent the year prior to her diagnosis not knowing what was wrong, visiting countless doctors, and getting discouraged with each possible, looming diagnosis. When she called to tell me about PD (I lived in NYC at the time), she was excited, almost giddy, to finally put a name to the muscle pain, the tremors and the severe lack of energy that was ruling her everyday. Ever since, she has been an exercise warrior and a research specialist. She exercises every day. Pilates, stretching, elliptical machine, you name it and she is going to make it happen regardless of her energy level on any given day.
Since Mom and I live far apart – me in Portland, OR and she in Arlington, TX – I’ve come to do my own research here as a way of staying connected to what she’s going through. Despite the miles, it doesn’t take a sleuth to discover her dedication to powering forward each and every day. Her positive attitude and intentions of not progressively getting worse are a source of constant inspiration. My mom and I agree that too many groups will focus on the pain and hardships, not the everyday journey and small triumphs. Grant’s Army is dedicated to showing how individuals find their strength and inspire others. I find inspiration every time I see my mom sit down to play the piano, watch her stretching in the living room, and being optimistic about her future. I couldn’t ask for a better role model.
December 19, 2011
I am the wife of a young onset Parkinson’s patient. When my husband was diagnosed with PD 2 years ago I really did not know what to expect. I had only thought of Parkinson’s as an “old persons” disease. I quickly read many books and articles about the disease and what to expect. However, anyone who knows about PD knows it is a boutique disease. I learned that each person’s experience with PD is different. Once I realized that this was disease was constantly going to change I had to learn to accept the good days along with the bad.
PoweringForward and Grant’s Army are my support network. Without this group of people and website I would be alone. I still consider myself fairly new to the disease and appreciate the support network. I am wife, mother, full time employee and now a caregiver. I do not have much time to seek care groups, but I have found that with the Grant’s Army events there is the love and support I need. Just as my husband learns to adjust to his disease, I have to learn to adjust to our new lifestyle. Grant’s Army helps me not to hide, but allows me to feel I am part of something doing some good. They are my new family where I can seek help if needed and continue to be myself. They have shown me great love and compassion.
Parkinson’s has taught me to appreciate the everyday things. Not to take for granted what we were once able to do, but to accept what we can do now. I know that things are changing and when days get bad, and they do, I try to remember what my husband told me a year ago. “Hate the disease, do not hate me.” We began this journey of life together 20 years ago and we will now continue this journey hand in hand. Our hands might shake a little more and his smile might be replaced by a mask, but we still continue to love each other. What matters most is not the physical appearance, but the inner self.
The best advice I can give to a Parkinson’s caregiver is to make time for yourself, I know this is easier said than done. I know that I will not be able to care for anyone if I am not well. This disease can cause crankiness and frustration for the PD patient, but I try to keep my sense of humor. Replace the tears of sadness with tears of laughter. My mom once told me “God does not give you more than you can handle”, after this diagnosis she said she wanted to sit down and talk to God.