Good morning. Thank you for allowing me to be here.
Fifteen years ago, I would never have dreamt of sitting here to talk to you about Parkinson's. I was diagnosed six years ago, and they told me I have had it 10 years plus, so that puts me back in my 20s.
When diagnosed, I wasn't told of the things that come along with Parkinson's, such as the depression and anxiety that you have to deal with on a daily basis. It has forced me out of my job. I was in my prime, making $50,000 to $60,000 a year; now I'm making $20,000 a year on disability and long-term leave of absence.
This disease can also rip a family apart and pull it together. My mom, her husband, and my brother I have not seen in six years because they cannot deal with this disease. My wife's side of the family has rallied around me and really picked up...and anything that we've needed, they've always been there.
We had to sell our house. We had a two-storey house on a nice lot. Because I was starting to fall down the stairs due to some of the problems with Parkinson's, it was unsafe for me, so we moved to a bungalow. Financially, we are mortgaged to the hilt.
I have a 10-year-old son who worries about me constantly. I have had difficulties when picking him up where I haven't been able to move, and my son thought I was going to die because of this. He is constantly worried. He did not want me to come here today because he is so worried about me.
My wife and I have drug plans and we've capped out on my wife's plan. I normally get Botox for the dystonia in my foot. However, because we have capped out, I cannot afford to get this treatment. So now I have to wait until January before I can have this treatment and start walking a little more easily.
Things that people would normally plan at this age, such as retirement, we don't plan. What we're planning is where I'm going to be in the next 10 to 20 years. Am I going to be in a home? Am I going to be able to take care of myself in my own home? Are we going to have to look at going to a nursing home? This is not what we had planned on or envisioned.
We try to do things that aren't quite as hard on me, right now walking being the biggest thing, so it really limits my family as to what we can do. We used to camp all the time. Due to the medications I'm on, and the heat, I cannot function.
This disease is just.... Nobody tells you what it is and how it's going to affect you. It doesn't affect two people the same way. The main problem I have, as you can see, is the tremor, and of course the dystonia. There are problems with swallowing. There are problems when you can't walk or you can't stop walking. There's the embarrassment of...well, the way I am right now, but I'm not going to apologize for it. I think everybody needs to see this.
People don't understand it, and because they don't understand it, they're either afraid or they're rude. I've had a lot of rude comments put to me: they think I'm an alcoholic, because I do shake, I do have problems walking, I do stagger a bit. When those comments come out, if my son's with me, I don't need to say anything, because my son will tear a strip off the person. He's very good that way.
At home, with the family, we try to add a little levity to it, because you can only cry so much about this. My son constantly makes remarks that I'm giving him a milkshake when I go to pour his milk for him. It's little things like this that we try to do.
I run a golf tournament every year. I play golf; I don't know if it's actually the game I play, but.... The tournament I run is just a community tournament, but we've grown every year. In five years, this was the first year I could not finish my speech because of the disease. But everybody at that tournament was all right with it, and they all told me that they needed to see this.
This is a tournament that we started on a Sunday, and we've grown from 40 people to 95, last year. We're getting the word out and we're touching different areas. People from London and Oshawa come up to Barrie for this tournament. We try to raise the funds.
My biggest thought is that we need awareness. There's this thing where everybody thinks this disease is a disease of the elderly. When I tell them I have Parkinson's, they ask me my age. They don't believe that this is it. It's not a disease of the elderly.
Another thing people think is that your mind is not intact because you have the shake or you can't get the words out of your mouth. You know what you want to say, but everything just stops. They believe that your mind has left you. It hasn't. I've always said that my mind is intact; it's my body that's turning against me. And it is. The trip here today was very, very difficult for me. I've always had family with me to help me, and this is the first time I've done anything without them, so it's been a bit of an adventure for me.
But I'm honoured to be here to let you see what people with Parkinson's go through. This is sort of a mild day for me. There are days when I really can't do a whole lot. I know from the time I get up how my day is going to be. I live on medication. I take medication every three hours to keep me in a better state.
We need the research. We need to find a cure for this. I do not want to have to see or hear of my son or anybody else having to go through this.
With that, I think I'll leave you. I think everything I've said and what you've seen lets you know what is going on.
Thank you for the time.