Living with an incurable condition

Research_000011537371Small‘I would have never thought you had Parkinson’s Disease.’

‘You’re constantly active. How is that possible if you have Parkinson’s Disease?’

‘I’ve never seen you suffer with this disease.’

Some of the most common comments that I have finally come to the realisation will never have an appropriate answer. Disease, sickness, illness, among other words used to describe a person’s condition are commonly misunderstood. Before I get into the reasons for writing this post, I have to clear up some of the misunderstanding. I have a disease, but it is not contagious. I have a disability, but I am not disabled. I live with a neurodegenerative condition, but …. I hope you get the point. For me, living with a neurodegenerative incurable disease means that I wake up in the morning praying for the best, realising my limitations, and showing the world that I have a life to live to the fullest. There are only a handful of people who ever hear me say that I’m not having a good day, the best of days, or one of the worst days I’ve had in a while. Even then, it is after much thought on my part not to bother anyone with something that they can do nothing about. This disease that keeps on taking is slowly changing my life as I knew it a few years ago. Yet, the only person that I am hurting if I stop doing what I am still able to do is myself. I must include the fact that the medication regimen that I’m on allows me to have a quality of life that I am certain would not be anywhere close to what I have. Seeking and keeping the world’s best medical care, I truly believe, has helped slow the progression (to the extent possible) of this vicious disease for me.

For as much as this disease has taken from me physically, it has blessed me with the opportunity to meet some of the most amazing and inspiring people. Three of these whom have impacted my life and have allowed me to share my views, thoughts, and some far-fetched ideas with them are Tom Isaacs, Jon Stamford, Steve DeWitte. Aside from sharing an incurable disease, which is a strong bond in itself, our pledge is to put an end to this disease, thereby ending the suffering for many people around the world. Knowing full well that we are not in this alone, as we seek others who will go with us along the way, in so many ways into unchartered waters, I have confidence that we will prevail… because we don’t know any other way to live besides giving it our best for the benefit of the many.

Israel Robledo is a PM Ambassador and writes regularly about his experience. Follow Israel’s blog here

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