No matter where we are or how long we’ve been on our Parkinson’s journey, we have all encountered loss, adjusted to change, and adapted to the challenges of living with Parkinson’s. In the spirit of friendship and support, during our February 2nd meeting, we each shared something we’ve lost, something we’ve gained, and something that inspires us, along with an inspirational quote. What follows is a summary of that sharing.
Lost: spontaneity, hiking, long hair, hand dexterity, preciseness of folds in creating origami, legible handwriting, roller skating, Zumba, freedom to walk across the room without a walker, voice volume; a teaching career that fulfilled a lifelong dream and passion. Many spoke of soft voices that make it hard for people to hear and understand us, and questioned if the changes in our bodies are due to Parkinson’s progression or the natural aging process. One spoke eloquently about her mother, who had Parkinson’s and passed away when she was just a year older than the speaker is now; although she feels great and stays busy and active, she can’t help thinking about how much time she has left.
Gained: perspective, empathy, hope and optimism; slowing down to enjoy new pastimes and hobbies; new friendships, incredible gratitude, ability to listen well, creativity; self-motivation and stamina to keep going (to exercise and stay active); resolve to maintain independence; learning to accept help when needed; a compassionate eye, especially for people who look, act, and sound differently than most people.
“The women I’ve met and know here. Only people who have this disease truly understand how it impacts you every day. I know I’m not alone and when an issue or question comes up, someone will provide ideas or direct me where to go or share similar experiences to alleviate my fears.”
“Learning about the natural world. I like to say that optimism lives in my garden.”
“The tenacity and will to problem-solve exhibited by the women in this group.”
“All of us here—our determination, good humor, and kindness. I have a greater appreciation for what everyone faces in life, not only people with Parkinson’s.”
“All of us women and being part of a group where we can share anything.”
“Our group. I feel like I’ve gained another family. We listen to each other, understand the grief of loss from Parkinson’s, and offer one other hope and friendship. I know whenever I have a question, if someone here doesn’t have the answer, they know someone who will.”
“My faith. It offers me hope, truth, peace, joy, and strength.”
“Everyone not giving up.”
“The help and guidance from the group. It’s easier to talk to everyone here than my own family, as I don’t want to worry them. I know when I have a problem and ask for help, I will get the names of twenty-five people to consult.”
Some of our inspirational quotes are written down; others are carried around in our heads; a few are the remembered words of mothers or words of wisdom we’ve created for ourselves. Life is not a matter of holding good cards, but of playing a poor hand well.” ~ Robert Louis Stephenson “Life isn't about waiting for the storm to pass, it's about learning to dance in the rain.” ~ Vivien Green “In three words I can sum up everything I've learned about life: it goes on.” ~ Robert Frost “Above all, be the heroine of your life, not the victim.” ~ Nora Ephron “Out beyond ideas of right-doing and wrong-doing, there is a field. I’ll meet you there.” ~ Rumi “When things get tough, the tough get going.” ~ American English proverb “When given the choice between being right or being kind, choose kind.” ~ Dr. Wayne W. Dyer “Ring the bells that still can ring Forget your perfect offering There is a crack in everything That’s how the light gets in.” ~ Leonard Cohen “Hope” is the thing with feathers - That perches in the soul - And sings the tune without the words - And never stops - at all – ~ Stanza one of a poem by Emily Dickinson “Some days are better, some days are worse. Look for the blessing instead of the curse. Be positive, stay strong, and get enough rest. You can’t do it all, but you can do your best.” ~ Doe Zantamata God grant me the patience to accept the things I cannot change, The tenacity to change the things I can, And the good luck not to f**k it up too often. ~ Serenity Prayer variation Personal inspirational quotes: “Don’t be stingy with your joy. If it’s to be, it’s up to me. Do what you can, want what you have, And be who you are.” “Be content with what you don’t have.” ~ a personal saying since college “I keep going on – until it’s my turn not to.” “Things are good – I hope they stay that way.” “This too shall pass.” ~ what my mother always told me