Navigating Independence with Parkinson’s Disease
As a progressive neurodegenerative movement disorder, Parkinson’s disease (PD) comes hand in hand with an increasing loss of independence as the disease advances, resulting in a gradual loss of independence. This is often difficult to navigate and can sometimes contribute further to the depression and anxiety that many people experience as common non-motor symptoms of the disease. However, many people with PD find ways, big and small, to regain some sense of independence and to embrace the support they need, and we’ll share some of those ideas with you below.
A Doctor’s Perspective
As a movement disorders specialist, I often discuss with my patients how they are navigating their daily lives. As Parkinson’s disease (PD) progresses, it’s natural to grieve the gradual loss of independence. Many, for instance, hesitate to use a walker because they feel it signifies surrender to the disease. I offer a different perspective: while you might now rely on a walker to move around, it doesn’t take away your independence – it enhances it. A walker enables you to remain mobile and engaged in the activities you love. Without it, you risk losing the freedom to do what matters most to you.
The same can be said for giving up driving (also known as driving retirement.) If you – or someone who cares about you – questions your ability to drive safely, you must consider stepping away from the driver’s seat. This can feel like a major blow to your independence, but you can choose to think about it differently. Without proactive alternative arrangements, you could end up limiting your freedom by staying home more often. Instead, maintain your mobility and independence by exploring the transportation options available in your area, such as local senior services, GoGoGrandparent, or ride-sharing platforms like Uber or Lyft.
In an effort to better understand and share the personal experiences of people with PD who are navigating the loss of independence, we distributed a survey to our PD community. We received many responses from people with PD who were kind enough to address the following questions.
Real Challenges, from Real People: Stories of Independence and Challenges with Parkinson’s
Has PD limited your independence? If so, in what ways?
Many survey respondents mentioned challenges related to giving up driving:
“I am about to give up driving. I have moved from a cane to a walker.” – Richard W.
“I am dependent on my wife to drive me places I need to go and to get to my wheelchair.” – Gary L.
“I no longer drive and must find someone to take me places that aren’t within walking distance or on a bus line.” – Linda H.
“I have vision problems and don’t drive, so I have to depend on someone’s generosity and availability. Out of politeness, I ask only for the most necessary rides.” – Betty M.
(For more information, read our in-depth blog post on Parkinson’s and driving, which features perspectives from occupational therapists specializing in neurological conditions.)
As some shared, difficulties with getting from place to place independently can be accompanied by other experienced losses:
“I always enjoyed driving as a way to relax and to get out and do things. I feel so locked in. I am not going to workout as much as I used to, and I miss the people there and the fellowship.” – Patsy C.
“I am currently unable to drive or even get in and out of the car. Most of the time I cannot walk a few steps or even stand without the support of a walker or person. I miss spontaneous trips to the beach, yard sales, and going out to eat or to hear jazz/blues.” – Cathryn S.
Beyond transportation, many respondents shared how PD affects their daily activities:
“Sometimes I need help dressing, getting into bed, and using my wheelchair.” – Steve P.
“I have increasing difficulty typing, texting, or even holding a phone due to a bilateral rapid, forceful tremor. It’s a challenge to pay bills or even attend a virtual volunteer meeting.” – Cathryn S.
“I’m not able to cook or take care of my grandchildren.” – Caroline H.
“I need someone to help wash my hair. My writing is limited, and it’s hard to wear buttoned clothes.” – Fran E.
“More planning is required for activities and travel. It takes longer to get ready to go, and fatigue limits my time out.” – Neil H.
Additionally, many respondents shared emotional concerns about their loss of independence because of PD:
“I am afraid to be left alone.” – Marta C.
“I feel more cautious and hesitant to go out on my own and try new things.” – Enid S.
“I fall too often due to my balance issues, so my wife (caregiver) is very concerned about me doing anything on my own.” – James M.
“I am completely isolated from the outside world.” – Joyce C.
If PD has not limited your independence, is this something you worry about? What is your biggest concern in this area?
Those who have not yet experienced a loss of independence, or are in the early stages of this transition, shared their biggest concerns about the future:
“I am worried about driving and who I will hire to care for me or help me.” – Sherrill B.
“The time when I can no longer transfer myself to and from the toilet.” – Valentin D.
“The inability to drive and reliance on family members for daily tasks.” – Alison B.
“I am very anxious about falling.” – Marta C.
“My biggest concern is moving to a wheelchair. They are difficult to lift and, while most stores are accessible, the access is not always at the most convenient entrance.” – Richard W.
“I am most concerned about being a burden to others.” – Patsy C.
At the American Parkinson Disease Association (APDA), our motto is: “Strength in optimism. Hope in progress.” And the PD community never ceases to amaze us in the ways they face this disease with positivity, resilience, and a sense of humor! In the final two questions of our survey, respondents shared several ways that they have been able to maintain or gain back some of their independence, while also embracing the help they need.
Overcoming Challenges: Tips from the PD Community
If PD has limited your independence, are there tips, tricks, or workarounds that you have discovered to get some of that independence back?
Some respondents mentioned assistive devices and alternative ways of getting around:
“I use Uber and cabs.” – Patsy C.
“I use an electric wheelchair.” – Valentin D.
“I have a gadget that helps with fastening buttons and special utensils that make eating easier. I also wear clothes that are easy to pull on, like sweatpants.” – Steve P.
“I use a transport chair to get around my home and a wheel walker when l go out.” – James M.
“When balance challenges make it difficult to be in slow-moving crowds or lines, a cane or walking stick can help.” – Mary P.
Others have made changes to their living arrangements:
“I now live in a place where there are more things to walk to. I can walk to the library, the theater, my church, and many restaurants and little shops.” – Patsy C.
“Independent living communities provide transportation, three meals a day, activities, and friendships, as well as easily accessible living and a variety of living arrangements.” – Sharon H.
And many found that small changes can make a big difference:
“I listen to audio books when reading is difficult.” – Enid S.
“I have an alarm on my watch to keep track of my medication schedule. And I find activities to replace ones I can no longer do. I go to an exercise class that is accepting of my walker and my ability to participate.” – Neil H.
“Allowing myself to nap in the afternoon and limiting my activities to occur during my on time.” – Kathleen S.
“I book appointments at a time when the transportation costs are less. And I order a lot of things online.” – Patsy C.
If PD has limited your independence, are there ways that you have discovered to embrace the help that you need?
Many respondents highlighted the importance of accepting help and building a support network:
“I find that accepting help from others allows me to do more than before.” – Kathleen S.
“Online support groups work well.” – Douglas O.
“Meditation helps.” – Jean K.
“I meet with a therapist, and I have learned to ask for help.” – Marta C.
“Don’t be proud, ask for help!” – Mike F.
“When people offer to help in various ways, I let them even if I don’t really need the help at the moment. It makes others feel good and gives me help to turn to when I really need it.” – Steve P.
“Accept help from your spouse and family with a sense of humor!” – Cathryn S.
“My husband is fabulous – drives me to appointments and goes with me anywhere.” – Connie G.
“Accept rides from wife and friends, cheerfully!” – Richard S.
“Buy your spouse a red convertible and promise her/him dinner for two after your medical appointment. (The jury is still out on this one.)” – Richard P.
“Supporting my care partner as she pursues activities that are fun and socially engaging for her; it helps her help me.” – Elizabeth N.
Tips & Takeaways
- Parkinson’s disease can impact independence. The loss of independence that accompanies advancing PD can be difficult to navigate, but many people with PD find ways to regain some sense of independence and to embrace the support they need. Small changes can make a big difference!
- The need to give up driving can be a major contributor to loss of independence. You can read more about driving and PD here, and you may find it helpful to proactively consider alternative arrangements that will enable you to maintain your ability to get around.
- APDA’s nationwide network of Chapters and Information & Referral Centers offer a range of PD programs, resources, education, and support that can help you navigate the loss of independence and other challenges. Visit the Community page of our website to see if there is a Chapter or Center near you, email apda@apdaparkinson.org, or call us at 800-223-2732. (Or visit our Virtual Events Calendar to access programs no matter where you live!)
- If you are experiencing depression and/or anxiety, which are common non-motor symptoms of PD, talk to your healthcare team. Medications and psychotherapy, such as cognitive behavioral therapy (CBT), can help.