Faces of Parkinson's Video Series

Carol Scott Age: 65 Diagnosed: 2011 Carol Scott Okay, Nicky, time to go for a walk. My name is Carol Scott. And I’ve known about Parkinson’s almost a year. I was diagnosed the day after my 64th birthday. I’m sure that I had the symptoms for at least five years before I was diagnosed. When I was typing on my computer, my thumb would wiggle, and my hand started to shake a little bit. And then one evening I began to shake violently, just all over. So my husband took me to the emergency room. They couldn’t find anything wrong with me, but they did ask me to follow up with a neurologist. And when I came back in six months, she said, “Oh I’m sorry to say you do have Parkinson’s.” And it was devastating. I think my situation is very different from the average person because my husband is handicapped, and now I am starting to fail in certain areas too, so we have to kind of work that out. George Scott (Husband) She still cooks and does these things, and she just kind of fights through everything. I try to keep it pretty low key so she doesn’t have to stress, because it aggravates Parkinson’s. Carol Scott What I found is that exercise is really key. And so that keeps me active and moving. My neurologist says I’m better than I was the first day she met me. Support Group Coordinator …wisdom that you will get from support groups is invaluable to you. Carol Scott This particular support group that I attend, which is a national organization, provides almost everything that you need. You get information to share. You network. You don’t feel isolated and alone. I mean my husband has compassion for me, but he really doesn’t know what I’m feeling, so it’s nice to have someone to commiserate with that really understands, especially if they’re an encouraging person. My daughter says, Mom, you’re shaking, you’re shaking! And I said yes, I am. I will, I do, I can’t stop. You know, when you have something devastating happen to you, after a while it becomes your norm. And I’m just taking one day at a time. I go for a walk with my dog and I think, “Oh look at those beautiful flowers! Look at this gorgeous day.” You know, this day is probably gonna be better than tomorrow will, might be for me, so I’m gonna enjoy every bit of what I have and make the most of it.

Larry Sholin Age: 55 Diagnosed: 2001 Larry Sholin My name is Larry Sholin, and I was diagnosed with Parkinson’s January of 2000. The first time I played in the games back in September, I fell down three times getting to first base. And I did slide in to get on, but it’s it was really, I was banged up. And I knew I couldn’t sustain that, so we have a pinch runner now and the league is flexible. If I try to relax my body completely and visualize what I have to do, I can do it some of the time. Not all the time, but some of the time. Because you can’t, the thing is you can’t move your legs, you see? Parkinson’s shuffle here. It’s a frustrating experience because you just can’t move no matter how hard you try. Regardless of the medication cycle, sometimes your legs will just freeze like somebody’s tackling you in football. I used to take walks with the dogs and you know, I would stumble. And when I fell hard, uncontrollably on the concrete a few times, that’s what, you know really kind of woke me up as to you know, this is not gonna be fun and games here. You can feel the medication when it kicks in. It’s kind of like a wave of relief, relaxation, especially with the rigidity factor. You can, it just kinda starts from the head and courses down. My wife is of course my principal caregiver at this point, but I’m probably on the brink of, as far as the scale of Parkinson’s progression of needing someone, you know, more hours than she can put in. Orah Sholin (Wife) I would say that for the most part we’ve been trying to live as normal a life as possible. It’s difficult because we’re kind of on opposite schedules. Especially now, with the meds wearing off and not wanting to take that extra dose. So he’ll go to bed much earlier, whereas I’m a night person. Larry Sholin I play piano at the various retirement homes around the area. You know, I’m happy to play even for myself. It’s so therapeutic, I believe. But, you know, when I see others taking pleasure in it and getting enjoyment out of it, that that enhances my desire to do it. I try to live my life as close to normal as I as I did prior to being diagnosed, and I believe that as long as you can keep trying to do that, you’re gonna be better off, and hopefully at least slow the progression until we can come up with a cure. If and when I do slow down to the point where I can’t do it, that’ll be a difficult thing to deal with. But, my motto is never give up, never surrender, so I’ll find something else. (sings and plays piano) Now do a third time.

Wayne Clark Age: 85 Diagnosed: 1999 Wayne Clark Well my name’s Wayne Clark and I’ve had Parkinson’s, well as long as I can remember. I had started these tremors and I’d go to the doctors and they said it wasn’t Parkinson’s and there was nothing that could be done about it. And then I got in the hospital and they brought in a neurologist and so he told me I had Parkinson’s, which was, it was a relief, because it actually put a name to something that I couldn’t understand. If I can’t get other things, I can use this. And let that rest there, then I can paint out here. So far I’ve, you know, I haven’t stopped my tremors but I I’ve learned how to work with them. And the same with you know, the other stuff. The head bobbing is the same way. And I laugh about it because it’s not head bobbing, it’s just being agreeable with people. It’s sometimes embarrassing, like in, with the drooling, you avoid going into public, but you gotta go at times. So you just work out ways to get around it. Now before I started Botox injections, I carried a towel with me. Nobody seemed to mind, they figured you know, you’re getting along okay and so you just don’t get embarrassed, you just keep go ahead and do what you gotta do. Cindy Wooley (Daughter) You know we all had a certain thing to paint. Judy Skerl (Daughter) I would paint this color… Wayne Clark I’ve got a big family. It’s seven kids. And I think they were kind of like I was, relieved to have a name for you know, this, the tremors and so forth. You can’t hide those. Judy Skerl (Daughter) I think just day-to-day. Everything is a challenge for him. Keeping on time with meds, making sure he eats and gets plenty of fluids and rest when he’s tired. Wayne Clark Ah, that was good. Judy Skerl (Daughter) The hospital visits did open up our eyes, as far as the medications. There was a total lack of communication between this doctor and that doctor. This doctor wanted to be in control, yet his other doctors were not notified. And it was very frustrating to have them just start prescribing all kinds of different medications and different things when we’re on a regimen here, we’re trying to fix this, and they’re just making it worse. And how we handled that was just called my sister Cyndie, she’s real good in communications. And we sat down and got that all figured out and got the doctors on the right page and got him back home and he’s doing great. Cyndie Wooley (Daughter) Over the years we’ve seen him overcome some of the difficulties that he’s had to do and we’ve all been there with him and um to see his paintings, even for myself, I am in awe of them. Wayne Clark I feel a little guilty. I don’t have a job, and I’m already having more fun now than I’ve ever had in my life. The doctor assured me that nobody dies of Parkinson’s, and if I keep up my exercise and everything I can expect to live another 20 or 25 years. When you’re 85 and you say another 20 or 25 years, you think wow! That’s a long time! I don’t know whether I wanna be 110 or not.