Planning For Uncertainty

“This disease could progress slowly or quickly. You could be able to work for 5 more years or 20. Everyone that has Parkinson’s progresses differently.” This is what our doctor told us the day I was diagnosed. How in the world do we plan for something so unpredictable?

Mine's Parkinson's, What's Yours

That’s no big deal? I can’t believe you are upset about that? Is that really important? Think about all the other struggles you could have, at least it is not ________. You think your life is bad, be thankful you are not having to deal with _______ like me. You want to trade places. On and on the comments go, and in those few little words, we dismiss and belittle the suffering of others. The reality is, all suffering, all loss has an impact, and that impact should not be dismissed. Mine’s Parkinson’s, what’s yours?

A Terrifying Prospect - Battling Daily Fears

I will be honest – I am terrified. As I sit here, I cannot stop thinking about my future. What will it hold? What will my quality of life be? What are things going to look like for my family? How much will I be able to function? How will my family be supported? What will my quality of life be? Will this be too much for my wife and kids? Am I a burden? How long can I honestly go on? On and on the questions could go, and as I look at the future, it is a terrifying prospect.

No More Bus Driving For You - Being Told "No"

I hate driving the bus. It is big, traffic around Nashville is awful, and it is not easy to navigate. Monitoring everything, being careful and alert, and just simply driving something that big can be exhausting. As I said, I hate driving the bus – so why am I not happy? She just told me I could no longer drive the bus. I should be doing backflips, but I am not – I am just mad.

What do you wish people knew about living with Parkinson's Disease, Part 2

While the first article (part 1) dealt mostly with the physical aspects of the struggle with this disease, I realized that the physical aspects of this disease was just a part of this battle. So much of the battle I face with my Parkinson’s Disease is the battle I face in my mind and emotions. In some ways, this part of the disease can be even more of a challenge, and makes dealing with the physical struggle that much more difficult.

What do you wish people knew about living with Parkinson's Disease, Part 1

How do you explain something to a person who has never experienced it? How do they understand what this disease feels like? It is hard for any of us to understand the depth of another’s struggle if we have not walked that path ourselves, but when we begin to see just a small part of what another is dealing with, it can help us as we work to help them.

Drifting Apart

We sit in a room in silence, side by side, both feeling numb. What is there to say? The hurt and pain of this latest diagnosis, some days, is unbearable. We sit there in uncertainty – will we make it? What does she think of me now? Am I still loveable? Does he still care for me; he seems so distant? It seems like we have not talked in days? How did we get here?