Voices of Parkinson’s Disease

Pamela: I think I noticed your Parkinson’s before you realized it—it was the tremor in your hand. And I didn’t say anything when I first suspected it. I just kind of monitored it for a while but when I finally asked about it, you really didn’t know what to say, I guess, so I made you go to the doctor and we got some tests ran. So technically, you got diagnosed with Parkinson’s in 2019. It’s been a slow progression. How are you feeling about it right now, babe?

Darryl: When I first noticed it, it scared me. It’s a disease that, it doesn’t allow you to do anything. It attacks you, greatly. It robs you of your making decisions on what direction to take. It’s a hurting disease because what you like to do and how you like to do it is…

Pamela: All right, he’s having a moment right now. All right, honey, so what is your happiest moment?

Darryl: Every day that I’m alive is a happy moment. And to be married to you is one of the happiest moments. When you get Parkinson’s, it affects your memory. Most of the time that I have illusions, it’s about people I have lost in memory—parents, friends, uncles—I wouldn’t wish this on anyone.

Pamela: We’re still in the early stages of learning about the disease and how it affects the mind and body. As a caregiver, I try to make sure that you’re living a normal life as much as possible. I try to keep you busy just doing light errands to keep focus on how to get to and from home. It could be something really simple, like can you go to the post office and get me some stamps, or can you go out and check the mailbox? We’re doing everything that we can do to keep you comfortable going through this.

Darryl: Those who are newly diagnosed with Parkinson’s, please do not deny it. You can feel like you’re in perfect condition and all of a sudden things change. So accept what you are and then accept help—from doctors, from family friends. Have strong family support. Try to keep that positive attitude so that negativity won’t seep in. Parkinson’s is a disease that can be dealt with.

Pamela: Is there anything else you want to say?

Darryl: I would like to be remembered, when I pass away, as a person who was thoughtful and loving and quick-witted and just enjoyment of life.

Pamela: We will remember you that way, honey, because that’s definitely a good description of you.

DIANE: It was a shock when we first found out. The first thing I thought of was like, "Oh, I'm losing my hero." You're still a hero to me. I still have to look at you that way.

LOUIS: I kind of got in touch with myself going through what I'm going through. It gave me a different outlook on life. In fact, I appreciate things that I used to take for granted because I'm losing some of the memories I used to have. I have quite a few grandkids, great grandchildren. And the thought of that that that that that I may one day not remember them, that's scary for me. This disease, it’s progressive. It just gets worse, gets worse, gets worse. Doesn't get any better.

DIANE: There's an adjustment every day because every day you're different. Your life changes dramatically.

LOUIS: It’s definitely a process. The best part of Parkinson’s I had when it was mild, but that didn't last very long. My short term memory was almost shot completely. I actually had to retire as a therapist.

DIANE: And you pushing yourself helps your Parkinson’s. The person that you are, you're just left to fight with it. As far as the hallucination, you didn't tell me 'til it was over.

LOUIS: Because at the time I was taking so much medication, I didn't want to take another pill. And I assumed that you was going to tell the doctors that I was hallucinating, and they were going to prescribe me another pill. You start seeing things and you're wondering, "Am I losing my mind?" If I tell her that the medication don't work, they gonna try to lock me up someplace. All the fears are there.

DIANE: In our African-American community, it's hard to trust the medical field for fear of the medical system, for fear of not having money to take care of the prescriptions. I think it's getting better.

LOUIS: I think we're fortunate in that area. We found very good doctors who are very, very knowledgeable.

DIANE: The reason we found the perfect doctor was that I went to a support group. And the first day I walked in, I just broke down because the women there had husbands or uncles or something, and I just knew they felt what I was feeling. And the nurse gave me this doctor's name, and it was one of the best answers.

LOUIS: Yes. In fact, I credit them with saving my life because in the early stage I felt like giving up. Because nobody wants to be a burden. I won't be able to do anything for myself, you know, not even gonna feed myself, not able to express myself. That's, that's hard to vision, to see that is your future.

DIANE: Vision that you have the best caretaker or wife, friend, partner by your side, and whatever needs to be done, I'll find out how it can be done.

LOUIS: And that's the joy in all of this is you're there.

DIANE: I'm your caregiver, a word that I don't like to use because I'm going to care for you anyway. And I'm still going to love you, and I'm still going to be your wife.

LOUIS: As long as I got you by my side, I can go through anything.

CYNTHIA: When I last seen your dad before your mom’s funeral, he just looked exhausted.

Cherie: Yeah, he was the caregiver for my mom because of her mental illness and diabetes and hypertension.

CYNTHIA: At your mom’s funeral, not only did he look wiped out, but he was shuffling. I said, “Cherie, is your dad okay?” And you said, “Oh, yeah, he’s ne.” And I said, “No, Cherie. I think maybe he needs to go to the doctor.”

Cherie: My dad was always this kind of person that regardless of what he was going through, it never showed. The shuffling that you see with Parkinson’s and the hallucinations and things that he would have, that’s something that could get lost if you’re dealing with somebody else who’s also ill, or if the person who has a diagnosis isn’t really letting you know what’s going on.

CYNTHIA: And he wasn’t telling anybody.

Cherie: No way. But between 2007 when she died and 2009 of his diagnosis, he started to have more symptoms of something going on. There was a time where my dad was at work and he was confused. He didn’t know where he was. And so we had to go pick him up. And at that point, my brother and I were taking him to the doctor. But we had no idea what the doctor may have told him. And then later on, we were told that he has Parkinson’s.

CYNTHIA: We had sleepless nights up on the phone talking about your dad. It did take you a little bit to accept the diagnosis because you were still dealing with your mom.

Cherie: But my dad would say, “I’m in this stage and then I’m going to go to this stage and then I’ll be in this stage.” So he was somewhat accepting, but there was a part of him that wasn’t. And he’d be like, “I’m going to get back in my car.” And I’m like, “Dad, you’re not going to be driving anymore.” So my poor dad, I probably was very cruel.

CYNTHIA: You weren’t cruel with your dad. You were protecting him and you.

Cherie: Yeah. My dad went to my master’s graduation, but here’s the PhD and he can’t go. And I always will remember you holding up your phone and my dad trying to see there on the little tiny screen me walking across the stage.

CYNTHIA: The funny part is when I got there, he said, “I’m glad you made it. You got here right in time. I’m getting ready to move.” I said, “Before you move, I want you to look at Cherie graduating, getting her PhD.”

Cherie: Oh my goodness. My dad passed from Parkinson’s this past November. Thank God the funeral home filled out his face, brought back his color. My dad looked like he did pre-Parkinson’s. It was like, here’s this person where Parkinson’s did so much to his body, did so much to his mind. But this person really is at peace. In the end, he looked like the Superman that he was.

SUSAN: I met you because I was starting to teach dance and movement to people with Parkinson's disease, and I was looking for people who also did the same thing. How did you become a dancer?

ALEX: My stepfather was a dancer, and he was the best ballet teacher I've ever known. When I said I want to start taking ballet classes, I had never danced in my life. But he transformed me in several months, so that I was able to get into school. And a year and a half later, I landed a job in the Swedish Ballet Company.

SUSAN: Well, you're a beautiful dancer. I mean, I think that's why everybody loves you as a teacher because you bring in so many different aspects to movements and you're experiencing Parkinson’s yourself.

ALEX: All I'm doing is just inspiring the best I can. I've had Parkinson's now, at least since the diagnosis, for 16 years. During class, I could have side effects, you know, the tremors, the slowness, imbalance. I keep saying that in class, "Make sure your fingers have all the energy you can give it." In other words, don't collapse your hands, but push through it because the action of having to sustain this very tight feel with your fingers gets rid of the tremor immediately, all of a sudden Parkinson's has no place to go.

SUSAN: I'm so inspired because I see what movement does for everybody. It gives them life. It motivates them. It makes them happy.

ALEX: You can achieve incredible results. Most people with Parkinson's will have neuropathy, atrophy and all these things only because they think it's an inevitable part of Parkinson's progression. But if you force yourself to use those muscle groups, they don’t have to be inactive.

SUSAN: There are so many people that come to us and say, "Don't tell anybody I have Parkinson's. I don't want anybody to feel sorry for me." And then they come to our classes and they start feeling good about themselves. And then they want to share their stories with people. I think the way you think positively has a lot to do with this, too.

ALEX: Well, what's the option? Wail in the negativity, I mean, succumb to the progressive disorder? I just don't even think about it. I think, what do I have to do today to feel good? What can I do today to help other people? I love working with people. And when I see that their life is changing for the better, that's all the reward I ever need.

SUSAN: How do you think your life has changed because of Parkinson's?

ALEX: Well, it's hard to neglect the fact that this purpose landed on my lap. I don’t want Parkinson’s. But it actually taught me that there's so much more I can do to make my life complete. And it's given me a new lease on life. And that's what I say every day. This is not an end all. This is a challenge. Parkinson's is just a challenge.

DIANA: What was the first thing that you noticed was going on with your body?

BUBBA: In 2002, when I rolled over in the bed at night, my arm would shake and then my right pinkie was shaking. Then in 2006, I was diagnosed with Parkinson’s.

DIANA: When you were diagnosed and you got home, that day, how did you feel?

BUBBA: Overwhelmed, scared. I can remember telling everybody I won't be here much longer.

DIANA: And you said, “I'm going to be in a wheelchair. This is awful.” We knew nothing about Parkinson's disease, but the Parkinson's Foundation helped us.

BUBBA: 20 years later, I'm still here. It's not a death sentence.

DIANA: There is quality of life.

BUBBA: There is quality of life.

DIANA: It's a journey we never anticipated, but we learned how to live with it for 20 years because I think humor — you and I laugh all the time. I recall when you were dreaming and you kind of flailed out and —

BUBBA: You said, "You hit me in my eye."

DIANA: Yeah, you hit me but good. And I saw stars and I thought, you broke my nose. When you say Parkinson's, everyone thinks tremors right away. You don't have tremors. You have a lot of non-motor symptoms. What are they?

BUBBA: The masked face — that's why you can't smile like you should because it's muscle related. I have several problems with my bladder control and constipation. Dry mouth feels like a ball of cotton in your mouth.

DIANA: Lack of sleep. It's been seven, eight, nine years, long time since you've really had a good night's sleep. I’ll try to help you turn over or get up out of the bed, and it will change for me. I’m scared to death of that, but our kids are very engaged in everything that we do with Parkinson’s. They volunteer at the events, they openly talk to people. I remember you and Josh went to the Atlanta Braves, and you were walking up the hill and somebody yelled out “Look at that drunk man” —

BUBBA: Old man.

DIANA: Oh, “drunk old man.” And Josh turned around, and in front of a hundred people, said, “He’s not drunk, he has Parkinson’s.” Good for him to tell everybody because intoxication is one of the biggest things, especially when you get into the hospital. God forbid you have an accident, they don’t know you have Parkinson’s, the slurred speech. The doctors can’t get over that you’re drunk.

BUBBA: Most people don’t want you to know they have Parkinson’s. They are ashamed of themselves.

DIANA: And I know for you it’s painful, but you inspire me. That’s why we just need to keep sharing over and over. It’s a calling because we have to educate so many people about a disease where more and more people are going to be diagnosed. But don’t be ashamed. We have our work cut out, but I love you.

BUBBA: Love you, too.

KELLY: Cedric and I been married for the last 20 years. He was diagnosed at the age of 39. For a full year after his diagnosis, he did not have any symptoms for Parkinson's. And he started working, but the symptoms started to progress rather quickly. He still wanted to push through. You got him set up on a medicine routine. But at the end, he found out that he quit his job through a letter they sent to him through the mail. And that opened our eyes to how people look at the medically challenged.

JULIE: Right. What's been surprising is all the surprises along the way.

KELLY: Ever changing. No one can ever expect what each day may bring because each day is different. So you know his sleeping pattern has changed. Two weeks ago, he woke up in a panic. He literally got up out of his bed and ran over his nightstand. And when he finally came to it, he was like, “Why am I over here?” That's kind of getting a little scary. I don't go to sleep until I know he's fully asleep and that may be 7 o'clock when it's time to get our daughter up for school.

JULIE: From the beginning, this has really upended how maybe you expected you'd be living. When you're so young and in your prime, this has literally affected everything. The supports that are in place are for the more typical patient, who is in their 60s, 70s, 80s and retired. Here he is in his early 40s, and there weren't these supports in place for you.

KELLY: The caregiver for that person does not have resources, especially if you're younger. I did have to end up leaving my job because Cedric did get to a point where I was his hands. I was his feet. I was his everything. When I left my job, I left medical insurance, and when I tried to look for resources, there just was none.

JULIE: You came in one day and you no longer had your long hair, right? And you told me, "I have no time to take care of my hair."

KELLY: I don't have time for me. Cedric says all the time, "I don't want to be a burden." And I believe him. But he will never understand my day-to-day challenges, and I would never understand his. Being married has its challenges, but being married with someone with an incurable disease, that's a lot of pressure.

JULIE: It is a lot of pressure. They call the care partner the invisible patient. There's a lot of need for changing how we support caregivers.

KELLY: Parkinson's has become our life for the last six, seven years. Being stuck, I'm not growing. I still see myself as being young at 45, and I just don't see anything further down the road. I'm just trying to find who I am outside of a caregiver for Cedric.

Pamela: I think I noticed your Parkinson’s before you realized it—it was the tremor in your hand. And I didn’t say anything when I first suspected it. I just kind of monitored it for a while but when I finally asked about it, you really didn’t know what to say, I guess, so I made you go to the doctor and we got some tests ran. So technically, you got diagnosed with Parkinson’s in 2019. It’s been a slow progression. How are you feeling about it right now, babe?

Darryl: When I first noticed it, it scared me. It’s a disease that, it doesn’t allow you to do anything. It attacks you, greatly. It robs you of your making decisions on what direction to take. It’s a hurting disease because what you like to do and how you like to do it is…

Pamela: All right, he’s having a moment right now. All right, honey, so what is your happiest moment?

Darryl: Every day that I’m alive is a happy moment. And to be married to you is one of the happiest moments. When you get Parkinson’s, it affects your memory. Most of the time that I have illusions, it’s about people I have lost in memory—parents, friends, uncles—I wouldn’t wish this on anyone.

Pamela: We’re still in the early stages of learning about the disease and how it affects the mind and body. As a caregiver, I try to make sure that you’re living a normal life as much as possible. I try to keep you busy just doing light errands to keep focus on how to get to and from home. It could be something really simple, like can you go to the post office and get me some stamps, or can you go out and check the mailbox? We’re doing everything that we can do to keep you comfortable going through this.

Darryl: Those who are newly diagnosed with Parkinson’s, please do not deny it. You can feel like you’re in perfect condition and all of a sudden things change. So accept what you are and then accept help—from doctors, from family friends. Have strong family support. Try to keep that positive attitude so that negativity won’t seep in. Parkinson’s is a disease that can be dealt with.

Pamela: Is there anything else you want to say?

Darryl: I would like to be remembered, when I pass away, as a person who was thoughtful and loving and quick-witted and just enjoyment of life.

Pamela: We will remember you that way, honey, because that’s definitely a good description of you.

Jeff: Parkinson's was just something that I had no clue about, and even being around my grandmother, kind of the first symptoms were showing where she had the real stoic face and the hunched over and the shuffle. And at her age — she was probably in her mid seventies — so it just didn't seem wildly changing, you know, almost kind of thinking, oh this is kind of an older person and this is just kind of an older person disease.

Michael: With Granny, she was always being proper. But I just remember distinctly one time I was sitting in a chair, and she came in and kind of had this fixed gaze and she said, “You turn down that damn TV and go to bed right now!” And she's looking at the TV. She's looking at the sofa. There's nobody there. That was the only thing that stood out as being just incredibly odd, and it turned out to be very dominant in the future looking at dad.

Jeff: With our father, he got it when he was 60. As he was getting progressively worse, that is when the hallucinations just really took off. He went to a nursing facility, and I would come to visit and it was so totally off the rails. He would come in and he’s like, “They've got people in there and they're whipping ‘em and they're tying them up. And I keep getting the nurse to tell them to come down here, that they've got to make it stop.” And it continued for the better part of about a couple of weeks, but the nursing home had to take the phone out of his room because he tried to call 911 and tell the sheriff they needed to come up there and stop what was going on. Parkinson's was having effects on him in just all kinds of different ways that were a little not normal and a little scary.

Michael: You and I had conversations during all that time, especially when Dad was bad, you know, we're not going to go through this. It took me a year to be diagnosed. I knew I had it from the minute I started feeling it. I was just so prepared for it. You and I had the thing about really not being embarrassed by things but Parkinson is highly visible — your hands, your face, the way you interact with other people is so noticeable. And what made me most uncomfortable was seeing other people be very tense about noticing it and not knowing what to do. But it's moved along. And they told me, “It may get worse in a year or seven years or maybe never.” And so I've progressed slowly. And I think when people first diagnosed, you need to be very in tune to opening yourself up and just sharing it up front. People are so happy to help, and I just can't believe the support I’ve received.

Jeff: I'm very proud of you and the way you've handled everything. And if this is hereditary and I may be next in line, you have been a wonderful role model not only for this, but a lot of things in life. I appreciate it.

Michael: And I love you, bro. I really do. Thank you for all your help and I hope we're able to help out some people with this story.

Millie: It was last year in November that we experienced something unusual that had not happened during those nine years. My father was standing inside the house, knocking on the front door. He goes, “I'm knocking and they won't let me in.” I put him back in his room, and for the next two days and nights, he was in this psychotic mode where he was seeing things. He was mentioning to me that in the closet there were some men that were trying to get him. And he was really terrified, and he would just stare at the door. I put him to bed. Within a half an hour, he was back up, acting like he was digging holes on the floor. I go, “What are you doing?” He goes, “I'm working with so-and-so. We're digging holes.” He was almost like sleepwalking. He would say, “When was he going to go home?” And I'd say, “Dad, you’re home.” He would reply, “This isn’t my home.” I was really frustrated because I didn't know what to do. Never were we ever told about the nightmare walking or the hallucinations.

Gus: There should have been at least some notification that psychotic symptoms like hallucinations and delusions can sometimes pop up with individuals who suffer with Parkinson's disease. How did you feel as these particular symptoms of hallucinations and delusions were occurring with your dad?

Millie: It was very painful for me to see what was happening to a man that I remember was very strong. And to see how he is just deteriorating and he's going through this. It was just very painful as a daughter to witness.

Gus: Yeah, when something assails our loved ones, we feel out of sorts, right? We feel helpless. But that's where — had you known a little bit more — would that have armed you in a slightly different manner?

Millie: Absolutely. Being Hispanic and especially my father's primary language is Spanish, for him even to go to meetings, he doesn't understand it very well since all the meetings are in English. But just gathering with other Hispanics in our community, he's able to see that he's not alone in this journey.

Gus: What we're trying to do is cast a light on areas where there isn't as much information out there. So I'm particularly grateful to you, Millie, for sharing your experiences.

Millie: I would like for people to look for help. There's people out there. There's programs out there that can help you. I'm just so grateful knowing that he's not alone. He's not the only one dealing with this disease.

Tara: Mom had that infectious laugh that you couldn’t help but laugh along with.

Kerry: I remember driving up to the Finger Lakes in upstate New York— the air conditioning kind of kicked out in the car and it was so hot and we had just stopped at that ice cream stand. We pumped up the radio and were driving through these scenic lakes and the ice cream was just melting all over us and we were just dying laughing.

Mom was always seeing the glass half full, regardless of what life throws your way.

Tara: When she was diagnosed with breast cancer, we were kids and she really kept us having a normal life and didn’t complain. And then when she was diagnosed with Parkinson’s Disease, she had that same approach. She was only 57 and had such plans to travel the world with our dad and certainly her Parkinson’s Disease interrupted that.

Kerry: Her sense of adventure I think is kind of unmatched. I always channel her when I’m nervous to do something. I say, “What would Mom do? Would she say yes to this?”

Tara: She would say do it and do it now. Our experience with her disease definitely taught me to take opportunities when they present themselves. That was hard when she lost some of her mobility and couldn’t do things like go on trips with us.

Kerry: Because it’s a neurological disease, it has all these cognitive issues— depression, anxiety, confusion. She had a hard time sometimes keeping her train of thought going. And initially that was hard for me to interpret, you know, that here was your mom, an icon who always had it pulled together. And seeing that was a little unnerving. But I don’t ever once remember her complaining or feeling sorry for herself.

Tara: I remember her having experiences with seeing things, almost hallucinations.

Kerry: One time we were sitting in the kitchen and she said, “Oh, there’s a bear out there.” And I said, “A bear? Well, is he scary?” And she goes, “No, actually he’s kind of cute.” And then I think she realized that that is not something that you typically see and she started laughing. There were definitely a lot of challenging moments along the road.

Tara: I will say a lot of the positives now overshadow the negatives. I remember, she always liked ladybugs and then right after she passed, we started to see them…

Kerry: Everywhere.

Tara: …everywhere.

Kerry: When I got married, we were taking pictures and the ladybug landed on my hand. I started crying and was worried that I had just ruined my wedding makeup. But it was such tears of joy because I felt like at probably the most important day of my life, Mom was there.

Tara: I don’t know what happens after you’re gone, but you really do want to believe their spirit is still with you. She really was a light in everyone’s life.

Kerry: A light that’s still shining.