Thank you for sharing. I find when I "try" to be the old me and do more than I should, that is when I end up being more symptomatic. I am still trying to find a balance, litterally and figurtively!
I love your poem! I can so relate to every word. I'm struggling to hold on the the "old" me, too.
I still have children at home and a husband, and they want the "old" me back, too. The one who is ever present and cool and collected; not the "new" one on a roller coaster of ups and downs. I'm just wanting to coast, but PD won't let me.
May I copy this poem and add your name. I would like to show my family.
I haven't posted here much. Hope this is in the right place.
Certainly some of our cognitive changes can look like personality changes to our families and close friends and even to ourselves. These changes can show up soon after diagnosis for young onseg people and be very discouraging, but often they don't get much worse, I am told, By the time you get to 60 or 65, your "normal" associates may have caught up to you, and you'll be more experienced at coping. In fact, the doctor that gave me this information said that I should "cultivate a habit of optimism."
So, when I seem weirdest I say to my family: "I'm in here! Don't give up on me!" And when I feel like bearing down on myself, I remember that I have gained in some areas when I lost in others and, due to the plasticity of the brain, my more creative side is stronger and more expressive (saw that on a daytime talk show about neuroscience yesterday). By the way, I have been diagnosed for 13 years as a young onset and am now 66
I keep a folder for my computer for "inspiration and boosts," and I do some journaling. I wrote this a couple of years ago when I needed a boost:
"This is not the life described in the script they handed me in the beginning, but this is the life I got. Having a chronic, degenerative neurological disorder is not the worst life possible, except at the beginning and the end, and I'm not throwing away my enjoyment of life and my own dear self in order to achieve purity of suffering (meaning me only, not the reader) . Maybe my team can stave off some of the worst effects until I'm ready to depart, anyhow. Why suffer now for what hasn't happened yet? I'm doing other things, more creative things, that seem all the more valuable because of the struggle that went into them, the price that they exacted from my life. The higher good is probably served better now. I know I lead a sounder life, when so many temptations could lead to misery and confusion."
I hope this helps, SherriW. Your poem is wonderful, and I hope you'll write more as you live into a new and greater You.
Please discuss your mood and feelings with your doctor, too.
Thanks so much, Jaye - that was absolutely beautiful. Thanks for sharing. I discuss most everything with my doctor, so he knows me pretty well. Thanks again for sharing.
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Let me share my essay on Living with Parkinson's
'Food' for thought
Welcome to the New Normal
In like a lamb out like a lion
New diagnosis
