Mr. Robert told me that he wanted to feel the wind on his face again, like he once was able to do in his incredibly active life prior to Huntington’s Disease.
he wanted to feel the wind on his face again, like he once was able to do
I serve at Joy’s House, a local non-profit committed to supporting families by providing exceptional adult day services. At Joy’s House, we assist our Guests (clients) by sharing an embracing, safe and accepting environment while providing caregivers peace of mind, education and ongoing understanding and encouragement. Located in the Broad Ripple area and on the south side of Indianapolis, we serve an average of 55 Guests daily (145 unique Guests visiting regularly), the majority of whom are living with Alzheimer’s disease or another form of dementia. Our growing Caregiver Support and Education Programs have helped more than 1,000 unique community caregivers and we reach 10,000 listeners every Saturday through our weekly radio show on WIBC 93.1 FM, Caregiver Crossing.
As I began my service at Joy’s House, I decided that I wanted to get to know our Guests personally. To do this, you have to spend time with each of them. You have to ask them questions. Eat lunch with them. Play games. And you have to be patient and listen. Most guests are very willing to talk and once you find what makes them tick, it’s pretty fun to carry on a conversation with them, or simply sit and craft together. One Guest, however, intimidated me. His name is Mr. Robert. He is a tall man (6’4″) and he is living with Huntington’s Disease. Now, if you are like me, you will have to Google this disease. What I found was that many describe the symptoms of Huntington’s Disease as being like having amyotrophic lateral sclerosis (ALS), Parkinson’s and Alzheimer’s – simultaneously. It slowly takes away your ability to control your muscles and your ability to talk. It’s not a “kind” diagnosis and I was nervous that I wouldn’t be able to understand Mr. Robert. You see, he can’t control his bodily movements and he wiggles around a lot. His voice is soft and his speech is not clear. His gait, when he stands, is very unsteady and I am honestly shocked that he stays upright with his walker. But, one day, I decided that I’d sit by him and just listen.
What I found out was nothing short of incredible. He is a retired United Methodist Minister and spent the last part of his career counseling people through Methodist Hospital and his own private practice (Roots and Wings, named after a line from the hymnal Spirit of Life). I learned that he has always wanted to run a marathon and longs to feel the wind on his face again.
And that’s when it hit me. I’ve run the Indianapolis Monumental Marathon 3 times and although I wasn’t planning to run it this year, I felt a nudge or rather a push to make Mr. Robert’s wish come true. So, I’m going to push him on Nov 5th at the CNO Financial Indianapolis Monumental Marathon, hopefully with a full team of runners all Running for Robert. Here is my fundraising page – where all funding will go to Guest Scholarships at Joy’s House: http://bit.ly/2bmobCg.
We were lucky enough to partner with the CNO Financial Indianapolis Monumental Marathon’s Run for a Cause program to be allowed to push Mr. Robert and the Joseph Maley Foundation to borrow a running chair. Robert and I recently did a test run and things are looking and feeling GREAT!
His wife adores him. His daughters adore him. And I think the rest of Indianapolis would adore him if given the chance to know him. Come out and support Running for Robert and plan to give us high-fives along the course.