Happy National Parkinson's Day
Today for National Parkinson's Day we are joined by Lexi Salt, a great friend who knows the effects of Parkinson's disease firsthand through her grandfather, Ken. Parkinson's Day is a day to celebrate and uplift those living with Parkinson's, and we are happy to have Lexi and Ken share their story. Read more to hear about Ken's journey with Parkinson's and dementia through Lexi's eyes.
I would like to introduce you to Ken Holden, or how he has always been known to me, Papa. He is my grandfather on my Mom’s side. I grew up with so much compassionate care from my Papa. He would spend hours playing games with my brother, Trevor, and I. He bought me my first bike, taught me how to canoe, took me on my first camping trip (in our basement – I eventually graduated to the backyard and then a real campground). I have wonderful memories of Papa, Trevor and I playing volleyball over Nana’s clothesline in the backyard. He would rake up all the leaves during the fall for Trevor and me to jump in. I always looked up to Papa and remember saying “I want to be like Papa when I am older”. He was so incredibly active: constantly biking, canoeing, hiking, kayaking, roller-blading, playing volleyball, the list goes on and on. He travelled around the world doing amazing adventure trips: he cycled through the Rockies, hiked throughout Australia for a month, kayaked with beluga whales, swam with manatees and canoed with alligators in the Okefenokee Swamp.
Thirteen years ago, Papa was diagnosed with Parkinson’s disease and things started to change. He developed tremors which affected his balance. One by one, he gradually lost his ability to participate in all the activities that he loved to do. He tried very hard to remain active and continue doing what he enjoyed, but bit by bit, his body failed him. Today is National Parkinson’s Day. I wanted to take this opportunity to share my Papa’s story; someone who has been deeply affected by this horrible disease. It has been so hard to witness the significant physical limitations but even harder when his cognitive abilities started to decline 4 years. Papa now has moderate dementia, in addition to Parkinson’s. He has been living at a retirement home for the past year. Papa continued to fight back by going three times per week with my Mom to Rock Steady Boxing (a boxing program for people with Parkinson’s). He was doing really well until he experienced some new health setbacks and was recently hospitalized. Due to his increasing needs for care, he is currently waiting for the availability of a long-term care home.
It feels like my Papa is trapped in this sick body that doesn’t function properly any more. When I visit him, it seems like he recognizes me but often is unable to say my name. He has difficulty speaking; sometimes he can speak quite clearly, but often times he mumbles or says things that don’t make sense. It is really upsetting but I have learned to celebrate the small victories: when he smiles/laughs, when he successfully reads the title of the newspaper article, when he makes a comment that actually makes sense. Short-term memories quickly evaporate, and some long-term memories are fading as well, but he can still sing “You are my Sunshine” with my Mom. My Papa is still in there somewhere and I will continue to stand by him and love him. I tell him all the time that I love him. Most of the time, he doesn’t respond. One time, he replied “That’s nice”. And sometimes when I am really lucky, he says that he loves me too.
I have looked up to my Papa my whole life and that has not changed given his Parkinson’s and dementia. If you have a loved one with significantly reduced cognitive function, it can be difficult to spend time with them, as it can seem like they are a shadow of what they once were. At the beginning, I struggled to have one-sided conversations with my Papa but I continue to talk to him and share everything that is going on in my life. He is a great listener, even if he does not acknowledge me. My hope is that some of it gets through to him. I also like to read to him, and play dominoes with him when he’s having a good day. For those of you who have a loved one with Parkinson’s, dementia or any other debilitating disease, I encourage you to just be with them. Being present with them is enough.