A question for the Parkinson's Community

If your or your loved one’s experience living with this condition were a book, what would its title be and why? And what would you name the chapter you are currently in?

Answers from the Community

The name of the book would be “Living and Dealing with a Loved One with Parkinson’s,” and the chapter I probably would be in now would be, “How to Conquer the Disease and Move On.”

“Parkinson’s Will Not Keep Me Down.” The chapter I would be in is, “Keep on Moving, Keep on Trucking.”

I think the title to my book would be, “A Whole Lot of Shaking Going On.” And that title is obviously because I shake occasionally. And the chapter I would be in right now is titled “Drop, Roll and Crawl.” It’s just a play on some exercises.

I don’t know what the book would be called but I think my chapter would be, “Working While Having Parkinson’s,” something like that.

The book would be called “Antics” because we try to laugh when anything happens and then we get scared. So when I fall, I’ve been lucky that it hasn’t been anything serious yet. And the chapter that I would be on right now would be “Taking It Easy.” We have the COVID out there. I have to stay in. I have to be aware of that. Everywhere I go I wear a mask. I’m constantly sanitizing. So I’m in the high risk area. So that would be it. Thank you.

I think the book would be “Living Well With Parkinson’s,” and the current chapter would be “It’s Getting Harder and It’s a Little Lonely,” and that would be because of the pandemic we’re in right now. It’s taken away our exercise classes, and so it’s been really difficult to keep up with that and keep motivated. But overall, I’m going to keep on going and I’m going to keep on fighting this disease. I’m not going to ever give up for my… I want to be there for my children and for my husband.

I would say, “Don’t Let Parkinson’s Disease Define You,” and that you need to pick all the patients in the world, and the chapter that we’re currently on is “Take One Day at a Time” and stay focused on your loved one’s needs, but also take care of yourself because sometimes I put her needs in front of mine, and I realize now that sometimes that should not be the case, and that everyone is in this together.

I think if I had to title it, it would be titled “Parkinson’s: It’s a Journey,” and I would call it that because it is a journey. It’s not a one size fits all kind of disease. It’s different for everyone, and you have to take the time and slow down and realize what you need to do for yourself or for your patient, the person you’re taking care of. Right now, I currently think we are in the chapter that I would call “Taking It Easy.” Sitting back, relaxing, enjoying what we have in life and knowing that it’s going to get worse, but right now things are okay. I think I would call it “Parkinson’s a Journey” and this chapter would be “Taking It Easy.”

If my experience were a book. I’m going to use something that my husband says all the time, “Our Life is Not Supposed to Be This Way,” because we never dreamed that I would be here now. The chapter that I’m currently in, I would say, “Make the Best of It,” or “Make Lemonade,” or something like that. I think a lot about this whole idea that maybe it’s not what you thought, but maybe … When you dwell on what you don’t have, you miss the gifts and what you do have. That’s kind of my reason for that. So yeah, our “Life is Not Supposed to Be This Way,” and “Make Lemonade.” That’s what I would say for the title of the book and the chapter that I’m currently in. That’s a fun question. Thanks for asking.

“My Journey Into Living With a Debilitating Disease.” The chapter that I’m currently in is, “Coping with Day-to-Day Difficulties.”

I suppose the title would be “Find the Small Things That Are Good and Ignore the Small Things that Are Bad.” Emulate Bill Bucklew, a man with Parkinson’s who walks from South Carolina to San Diego. There are people who have more severe issues and continue to be happy, and most of all, just enjoy life.

My book would be called, “Parkinson’s Sucks,” because I never know what kind of day I’m going to have, and it all depends on my one little medication. So, every day can go up or down, and the chapter I’d be on right now is “Rollercoaster Ride.”

I think that the book would be titled “The Long Journey” and probably the chapter that we’re in right now would be “Rapid Decline.” That’s where it seems like we are.

I think the title of the book would be “I Can’t Believe This Has Happened,” and the current chapter I think would be “Okay, What’s Going to Happen Next?”

“The Frozen Man Disease” would be the title of our book. And why? Because there is some days where he’s completely frozen and we get no response out of him. Currently, we are in the chapter of “Learning About Parkinson’s.” It’s been quite a journey, and we’re not even halfway through our chapter yet.