What’s Your New Normal Since Diagnosis?
Last updated: September 2022
To find out more about how those of you in the community with PD and those whose loved ones have PD cope with the changes, we posed a question back in April on the ParkinsonsDisease.net Facebook page. We asked: “What’s your new normal since you or your loved one was diagnosed?”
More than 500 of you reacted to the post, 100 of you shared the post and 35 of you commented. Here’s what you said affects you the most about life with PD.
A loss of income
Because the physical effects of PD can become so debilitating, preventing many of you from working even part time, it’s common to need to quit entirely. Some of you have had to quit in order to take care of a spouse or loved one. For many of you, this has meant a change in lifestyle, from retiring earlier than planned to downsizing significantly.
“A 40% loss in income now that Hubby is on disability. Grief over lost plans and dreams.”
“Yes, loss of his income as he had to retire sooner than we planned for.”
“Since my diagnosis it has been a struggle financially. My ability to get anything done has suffered. I have had more off time than I have had in a long time, but because of financial strain, my stress level is high. I can't do the things I used to make my stress level go down.”
For many of you living with PD, communicating becomes a challenge. When it’s harder to speak, it affects everyone who wants to hear what has just been said. And beyond that, several of you mentioned that the dementia aspect of PD, which doesn’t affect everyone with PD, can make life especially complicated.
“Going to PT Parkinson’s support group (yea for support!). Me doing all the driving... . I’m unable to understand half of what he says. Trying not to get him upset because it’s just better that way.”
“The woman she once was is gone. We now have a woman who is new to us. Yes, at times our darling sister comes back. She doesn't realize she has to eat to get better. She quarrels about nothing. She doesn’t know me at times, and a snap of my fingers brings her back for a little while. She has dementia. I am at a loss at times as to how to help her.”
Falling and instability
Breaking a hip can be demoralizing as it tends to come with a loss of independence. For many, breaking a hip can be the tipping point to a slew of other healthcare problems, unfortunately. One bright spot amid the physical decline of the disease was seeing how many of you who commented are caregivers for someone with PD, and your responses reflected so much care and support.
“Heartbreaking that my darling sister who we all so love has Parkinson’s. She is so frail. She fell and broke her hip.”
“My husband was diagnosed just over a year ago, but apparently has had PD for several years. He fell and broke his hip due to a balance problem. He is basically an invalid. He can get around with a walker and wheelchair. I have had to quit my job, stay home and be his caregiver. We lost my income. He is well into later stages of PD. Has awful Dystonia in his legs, which twist and lock together and is very painful. Our lives have really changed. Yet we can laugh and have visitors coming and discuss all sorts of things. Also have found that PD support group is a great place to learn more about the illness and how to cope.”
Taking it one day at a time
Taking each day as it comes is never a bad strategy, regardless of what you’re struggling with. Choosing to live in the present makes each day more manageable; we’re not dealing with the depression over what has happened in the past, nor are we anxious about the future. Instead, we are able to do what we need to do each day and find the joy when it comes.
“Taking one day at a time. Some good, some not-so-good days.”
“Normal is always in flux. In the early days, it was easy to deny the truth of it. Now, there's no room for denial, and I take it a moment at a time, appreciating the good moments when they occur.”
Thank you to everyone who commented for providing care and support to the PD community.
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