How a Man with Parkinson’s Uses His iPad to be Productive
Digital memories facilitate meaningful engagement, share legacy
For the past few months I have been visiting with Niles, a colorful 77 year-young man. A former Boeing system architect, community theater actor, and an atheist married to a priest - his third wife. He is witty, engaging, grateful and he has Parkinson’s disease.
Niles thinks and feels very clearly for the most part, but with Parkinson's it is often hard to tell. Medical professionals call it hypomimea, or the diminished animation and movement of the facial muscles. Niles’ voice inflection is reduced and his memory is not what it used to be.
Niles is sharp and he is never far from either his iPad or his iPhone. He watches YouTube, Facebook’s, and looks at pictures of his family on a daily and hourly basis, just as you or I do. He is beginning to need assistance to manipulate his mobile devices. I see his tremor impact his experience, and we are working with accessibility features that can help, but he moves forward unfazed.
I have been stopping by weekly. He’s profoundly happy when we sing together, and it’s no surprise that it also helps his speaking volume - a lot. Despite his Parkinson’s, the love he feels is visible when we look at pictures of his family. He delights in watching clips of plays (many of which he once starred and sang in) on YouTube and reminiscing together.
Not only is Niles able to reminisce, but he’s also productive. We created a story by recording his voice over images. It was for his wife Karen; it told the story of their meeting and falling in love.
During my first visit, Karen joined us and provided a box of pictures and some context. We used the camera on the iPad to save the photos digitally. Next, Niles and I created a Digital Memory Box - a simple website with links to his favorite photo albums, YouTube videos, music playlists and stories narrated in his own voice.
The digital memory box website is a great conversation starter for Niles’ visitors, they have instant access to cherished memories that help him smile. There is no doubt how valuable this resource is today and how cherished these memories will become in the future.
Truthfully, I think we can all do more to help our nation’s caregivers. It just takes some fresh ideas, such as tapping into those YouTube videos of Niles’ favorite musicals, digitizing a few old photos, or identifying cherished songs. The real bonus is that these simple steps help both the care recipient and the caregiver.
As Karen said to me “What a gift you have given our family, now and for years to come! I can’t thank you enough.” In my mind, those few digital keepsakes are the gift that keeps on giving.
Generation Connect designs resources to help empower people, such as those living with Parkinson's, through technology.