Community Views: What I Took for Granted Before My Parkinson’s Diagnosis

Parkinson’s can be such a challenging diagnosis to accept because it can affect nearly every facet of your physical everyday life. This, in turn, can easily affect mood.

For many, the only way to find peace with Parkinson’s is through time and acceptance. The biggest piece that demands understanding is that life will look different with this disease.

The good news is that many people do learn how to live a full life with Parkinson’s. But, before they reach that place of acceptance, many need to grieve and accept all that was lost.

To help those who are newly diagnosed and those who are still working to find peace with Parkinson’s, we reached out on the ParkinsonsDisease.net Facebook page, asking you to finish this sentence: “One thing I took for granted before my diagnosis is _________.”

Here is what you said.

“Control of my everyday activity.”

It’s understandable that one of the hardest things to accept is the loss of control - of your body, of your schedule, of so much. Life will no doubt look different with Parkinson’s. You may be finding that you feel depressed at how much your life has changed. If that is the case, please try to be kind to yourself. Cut yourself some slack. Connect with activities that soothe and calm you, such as having a cup of tea, taking a bath, meditating, or listening to music. Any change to everyday living takes getting used to.

“My body doing what I told it to do. It used to be a strong, obedient body and now it does as it pleases.”

“Control of my everyday activity. Some days are out of my control.”

“Being able to keep up with my husband when walking.”

So many of you shared how hard it is to accept that your pace has slowed when it comes to walking. This can be frustrating. One upside is that so many of you also shared that your family members and loved ones have altered their speed to be with you. If you can, keep in mind that as much as a walk or hike might be about exercise, it is also the chance to connect with our people. And it sounds like so many in the community are surrounded by loving, understanding people.

“Being able to keep up with my husband when walking and hiking. Now he graciously slows down to my pace.”

“Keeping up with my daughter and family when we make trips out.”

“I miss the ability to walk quickly. I did hike with my grandson today in the mountains. He runs ahead, but always comes back.”

“Normal walking.”

“Stamina and coordination.”

Beyond just everyday walking, many of you mentioned how hard it is to accept that bigger physical challenges, from sports to weightlifting, are more and more out of reach.

Parkinson’s can make a trip to the grocery store a challenge, let alone a trip to the gym. But, those of you who have dedicated time in your life to sports and weightlifting have surely learned along the way that you have discipline and that you are strong - mentally and physically. What you’ve done and who you are are things that Parkinson’s cannot take from you. How you apply these qualities may be different today, but you are still a determined, strong fighter.

“Stamina and coordination. I had played basketball into college, but now it’s hard to just keep up with the kids in the backyard.”

“Running and lifting.”

“Ability to be independent.”

For many in the community, Parkinson’s does mean relying more heavily on others, whether needing a ride, help with chores, or a number of other things. This is definitely a transition, considering that most adults do struggle to ask for and accept help.

Just because we ask for help does not mean we are helpless. Asking for help is the chance to welcome company into our lives. It also gives others a chance to be of service, which is always a good feeling for them. No matter what your life looks like right now and how much help you need, it’s OK. Everyone gets through Parkinson’s a little differently.

“Doing things by myself miles from anyone!”

“Ability to be independent.”

We want to say thank you to everyone who shared openly about life with Parkinson’s. Thank you.

Engage with the community by asking a question, telling your story, or participating in a forum.