Living alone while living with Parkinson’s can be a blessing or a curse. Some people love their independence and love being able to direct their days all on their own. For some, not having a live-in care partner, family member, or roommate is lonely and a hardship.
in this episode
During this webinar, we talked to five people, Michael Fitts, Allyson Kinney, Michael Fahning, Gerrie Blavat, and Brian Reedy, who are living alone with Parkinson’s, some by choice and others not. They shared their stories and offered ideas and advice on how to live alone and well with Parkinson’s.
To download the transcript, click here.
(Note: This isn’t a perfect transcript, but it’s close.)
- While living alone comes with many challenges when you have Parkinson’s, our panelists agree that there are also many benefits. Living alone allows you to take as long as you need for tasks that have become more difficult with Parkinson’s, it motivates you to establish a strong social network outside of the home, and it forces you to confront your challenges rather than leaning entirely on another person, which can be unhealthy for a relationship
- As Parkinson’s progresses and symptoms become more disruptive, it can be difficult to manage symptoms without the support of someone else in the house, but just like many things with Parkinson’s, it is possible to problem-solve and adapt. Here are some of the challenges and solutions our panelists discussed:
- When dyskinesias or motor symptoms are acting up, it can be difficult to get dressed in the morning, let alone button tiny buttons. Michael Fitts’ solution? He reminds himself to take his time and take breaks. And if all else fails, he says, “It’s not the end of the world if the buttons on my shirt are undone. There are more important things to worry about”
- Carrying a large laundry basket full of clothes up and down the stairs can be overly taxing when you’re living alone. Allyson’s solution? Use a mesh hamper instead of a basket and throw it down the stairs. On the way up, use one hand to grip the railing and the other to drag the hamper up the stairs
- One benefit of having a care partner who lives with you is that they can help you remember and encourage you to do the things you need to do (such as exercise, take your medicine on time, eat properly, go to appointments, etc.) Brian’s solution? He writes everything he needs to do on a whiteboard calendar and checklist and uses that to guide his day, marking things off as he goes. You might also try the Evernote app, which Allyson recommends
- If there’s no honey, who’s going to take care of the “honey-do list”? As Gerrie says, all you have to do is change the “honey” in “honey-do.” Perhaps it’s a “daughter-do list”, or a hired “handyman-do list”
- Parkinson’s itself can feel isolating sometimes. When you live alone, loneliness can be a real struggle. Our panelists recommend a large number of things that have helped them to battle their loneliness including getting outside, connecting with others with Parkinson’s or similar interests, getting a support animal, giving back to the community, going to support groups, talking to a counselor, and discussing a medication change if loneliness is contributing to depression
- Driving can become a real difficulty for people with Parkinson’s living alone. Our panelists recommend trying the following options: using a ride-share service; getting a vehicle with auto-drive capabilities (note: this is an expensive option); riding a bike, trike, or recumbent bike; and exploring local organizations that provide free rides
- As your Parkinson’s progresses, you may not feel confident in your decision-making skills. If this is the case, don’t hesitate to reach out to a friend and ask for help in this area, or seek professional help such as hiring a financial planner. It is also of the utmost important to have a strong care team to help problem solve difficulties as they come up
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