There’s a great big world out there… unless you have Parkinson’s. Having Parkinson’s disease can make it difficult keeping up with your life. With doctor’s appointments, lab tests, trips to the pharmacy, physical therapy, support groups, fitness classes, community events, educational speakers, your world can seem dominated by Parkinson’s. I mean, can you last a day without the letters PD bouncing around in your head?
Imagine life without any fear or trepidation. All the things that you can experience. You can do anything… go ahead, jump out of that plane. Then Parkinson’s enters your universe and inch by inch, foot by foot, your world begins to shrink. It first starts off with your family and friends… then oozes into the cracks and crevasses of your life.
Family
Your relationship with your family can become strained. When you have Parkinson’s, your fear of becoming a burden can cause you to pull back from your family. You may start to spend more time avoiding family gatherings and limit communicating how you’re really dealing with the left hook PD
Friends
You start avoiding the things that you used to do. Maybe it could be a simple as going out to coffee every Sunday with a group of friends. You’re not feeling well one Sunday, so you tell your friends to go on without you. One Sunday turns into weeks of missing your friendly coffee time. Then your friends just stop asking because they know that you most likely won’t be feeling up to a social gathering. Boom, your world just got smaller.
Appearance
Parkinson’s can also miniaturize your world when your appearance is impacted. Sometimes I find it difficult to put on my makeup, style my hair… I know, how can I even say that, my hair is impeccable… dress myself up in a chic but classy outfit, slap on some jewelry and let me tell you, putting on earrings with Parkinson’s is like trying to pick a lock with your hands covered in Vaseline next to a bomb with 60 seconds left before detonation.
Voice
Communication is essential for having a healthy life, filled with healthy relationships. Parkinson’s can place a road block in your path, like a large boulder that won’t budge. With a lower voice volume, slurred speech, mumbling or stuttering, trying to stay in the world full of communication can make anyone crawl under a rock. You may find yourself not engaging in conversations, or limiting your interactions.
Physical limitations
When you can’t trust your body, life becomes smaller. You stop making attempts to push yourself out of fear of injury. Maybe you have a sore muscle or have bad dyskinesia one day, so you choose not to exercise. But then more days than less, you skip exercising at all. When movement becomes a challenge, it’s easy to give into your shrinking world.
Routines
As I’ve pointed out in the past, routines can be helpful, unless they are prohibiting you from breaking out of your box and enjoying the world. If you have a routine of eating dinner at 5 pm, watching your shows at 7 pm, then head to bed at 10 pm… you don’t leave any flexibility to go out for dinner and a movie with your spouse or partner. Smash! Your world got a tad bit smaller.
Apathy
Sometimes it’s just easier and comfortable to stay in your safe zone. Most people, like myself, have made their home a place where they can go and feel protected. I have made my home into a little fortress. No one can disturb my cocoon of sanctuary. In this place, I don’t have to worry about my symptoms because Lord knows that my dog doesn’t care if I am moving slow or rigid. With a lack of motivation, your world is continuously dwindling.
What to do if Parkinson’s is shrinking your world? I will post some helpful hints on next week’s blog. If you haven’t subscribed to my blog… well here is your chance…. to subscribe to Perky Parkie’s spectacular blog click here.
Very interesting observations. I share a much more limited version of the PD life you describe due to aging. But of course I wouldn’t suggest aging might also be impacting your day to day routine. (I’m not stupid.) 😎
Dad,
I decided I’m going to stop aging… today.
Boy, you hit the nail on the head with this post. One of my greatest fears in having PD is giving in to the temptation of not living life fully. While hard at times, I have learned to force myself to live outside my comfort zone and to try to do as much as I could pre-PD.
.
John, that’s all you can do. Just keep pushing yourself.
Hi everyone, I’ve been reading this blog (thanks Allison) for almost a year but I’ve never posted so I thought I would join in tonight.
Today I took what my Aunt Dottie calls a “pajama day.” I skipped my PD exercise class, blew off work, and just watched movies. I was self-conscious a little bit about it because the PD inner critic was saying “Don’t give into not moving. You’ll get slower. You may never come out of your house again.“
But the truth is even though my world was smaller today, I spent a very peaceful day home alone. My ”pajama day” nourished my heart and soul. I’m reflecting about how to adjust my life now that I have PD. I think I’m coming to terms with the need to cut somethings out because I am still working —but slower, and I want to be on the golf course more and take more swims.
I’ve identified with everyone’s posts. It makes me wonder. Maybe I’ve been overworking and being so busy to prove that PD doesn’t have to have an effect on my life. But it does. Some of it is positive. Maybe, less is more. Thanks for listening.
Sage,
Welcome to the blog! You’re right, sometimes you just have to give yourself permission to not be perfect. Have a day off. But just don’t let it become a habit! Thank you for sharing!
Wow
You are so on the mark!
Thank you for sharing
Todd,
Happy to hear you liked my blog! Thanks for reading!
Seems like just when you adjust to how you are with pd it chances.
K
K,
You’re so right. Remaining flexible to change is important.
The lack of loud and articulate speech has been my nemesis. I find myself avoiding conversations, especially when dealing with government or some other corporation where an error, by either them or me, has occurred and my ability to properly communicate my position is less clear than it could be. (happened today, that’s why I mention it first.
There financial and professional opportunities that I completely avoid because the confidence factor has been trashed by lack of a good speaking voice. The mere loss of articulate speech has made my world a lot smaller than it use to be, pre-PD.
And finally, just a little more damage caused by lack of ability to speak. I have, for over 20 years mentored young people (20-35) in business. Speaking clearly, a thing of the past, is clearly needed when having the discussions. I miss this teaching process so much, and it is making my world even smaller.
Peter, I can of imagine how devastating it is for you to lose your ability to talk. I’ve seen how much You light up when you’re teaching somebody something or trying to make a point. At least you can still write very well. Keep writing Pete!
Here’s hoping we all find energy and inspiration to make it bigger. Looking forward to seeing you at next connexion.
Dan, thank you for your message. I will miss you guys at connexion. Wish I could’ve been there!
I get my friends to come to me, it’s motivation to keep going…. even if you visit in your own space, you don’t feel quite so isolated
Beth, what a great idea! Thanks for sharing!
I was just thinking some of this same stuff. I am trying to force myself to do some pre-pd activities that I used to enjoy but it is hard once you have stepped away. You are motivating me to do it! Thanks Allison!
Lauren, happy to hear you enjoyed my blog!
Of course Parkinson’s doesn’t have me, because my life is dope and I do dope sh#t. Cool pic btw, but you can still suck it, until that song gets out of my head.
You can have Parkinson’s, but as long as Parkinson’s doesn’t have you…you’ll be okay. Thanks for getting “Say Something” stuck in my head by the way Allison Smith.
John, you said it! Parkinson’s doesn’t have you!