Welcome to Parkinson’s and Me. In this episode, Parkinson’s and the Other Side. Greetings everyone, I want to welcome you and thank you for listening. I am Daniel. I’m coming up on a year since my diagnosis of young onset Parkinson’s. My progression is pretty, I would say aggressive but certainly not as bad as others. Parkinson’s is unique to everyone. That’s a statement I have learned to embrace but also one that frustrates me to my core. However, here to pull me out of my frustration is my brother Bryan. Bryan, who are you?
I am a person that does not have Parkinson’s disease, but was invited by my younger brother here to share and The discussion of Parkinson’s because, as many of us know, Parkinson’s not only affects the person who’s diagnosed, but also impacts others in their life, and we’re going to bring aboard a guest that I’m very excited to have on your show. Daniel. It’s been a long time coming. And that is your wife.
Yeah, it is fantastic to have her on the show. It’s bittersweet. Much of the balance in my life comes from her. She is my wife. She is my precious one, but also my partner in the foxhole of this fight.
Well, I know she’s been very important to you, as you face Parkinson’s disease in your life. She was on a previous episode giving us some insight into a possible Parkinson’s cure. But on this episode, I think we’re going to get much deeper into who she is and the impact that Parkinson has on her.
Well I have the privilege of being closed in, in a closet to make sure that we have the best sound quality with my wife, thank you so much for joining me honey for some questions that I know a lot of listeners and I’m interested in hearing, but can be tough coming from your point of view.
Well, it’s it’s nice to join you and I would not want to be in any other closet than this one with you.
Yes. Our son is actually a way so we are taking this time and taking it to the max. We are having a Coronavirus locked down. A fun chat fun chat about Parkinson’s. Absolutely, I can’t make it any more remaining. Well, I wanted to get your point of view. We both were sitting in the same room when the neurologist came in to give that diet Notice, I know what was going on with me and I’ve shared that. But what was it from your point of view? What was it like to be in that other chair right next to me?
To get to that point, we have to back it up a couple of weeks.
To when you went to this neurologist and she said, it could be corticobasal degeneration. Yes. And you called me when I was at work, and you told me these things. And I’m writing them down and I had an idea of what
Because I didn’t know what they were.
I had no idea.
I had no idea what corticobasal degeneration meant, but I I study retinal degenerations. And I know that when your retinas gone, it’s gone. It doesn’t come back and I knew that didn’t sound good. Soon as I got off the phone with you. I immediately googled it and burst into tears at work. And mica, a guy that I work with came over and he’s looking at me and at night. He’s one of two people at work that I’ve kind of kept them updated on this path to figure out what in the heck is wrong. I remember telling him I said he just told me this and he has no idea what that means.
No, I walked out of the neurologists office, I was like, okay, Corticobasal Degeneration. I’ve got some work to finish up. And then I’m going to look that up on Google. I finished my work and then a couple hours later, I’d look it up as well and blown away. I was crushed.
Yeah. And I was trying to hold it together for you. But the next morning on my way to work I, I called my talent but even if I told you this, I called my parents just in tears. I mean, I could barely breathe. I’m gonna cry thinking about it now. And I remember telling him I was like, he’s, he cannot have this. This means he’s been showing symptoms for a year and a half. This means I have four more years with him, but you had had kind of call the doctor back and we’re kind of like, you know, I’m freaking out here. Cuz you told me that you think it might be this and I guess this is while we were waiting for the dat scan results to come back. And she had said, You know, I really shouldn’t have said That I really don’t think that’s what it is. and brilliant that that’s great. You should always throw things out there like that without much thought. And one of the key factors there is that you start to dementia real quick into all of this, in addition to the motor loss, and you just didn’t have that you don’t have that to bring you back to the us back to the question. The day that we went to see the neurologists to get the results from the dat scan. You were pretty anxious. And you were saying I think I’ve got it, I think I’ve got it because of this, this or this. This is
And the DAT scan only tells you whether you have a essential tremor.
Right or if maybe it’s some sort of drug induced Parkinson’s like motor behavior, you know that you can just figure out what drug it is take the drug away and you should gain normal function, but we were really hoping that it was going to be a normal dat scanner. But I have to tell you the whole the whole time I was saying it’s gonna be fine. In fact, I just I really didn’t think it was going to be fine. I really I really thought she was gonna say Parkinson’s disease. Really? I did and which is weird. You and I have been together for 21 years married for 17. And you know that I do not get any sort of women’s intuition. I am not that person. I’m just,
that’s interesting because in my mind, it was like this can’t possibly be it, I no way it’s going to come back. And it’s going to be an incorrect reading that whatever test this actually is going to come back and say, I don’t have it,
You had gone through everything else. I mean, they had looked done MRI eyes, the structure of your brain was fine. They determined through all of the testing on your nerves, that this wasn’t coming from the nerves. There wasn’t a weak signal in the nerves. They’ve narrowed it down to the brain. We knew he didn’t have a brain tumor. And we had gone through working with several doctors, you know, could it be this medicine? Could it be this medicine and I don’t know, I just, I would have been so happy. But when we’re sitting there and she said, when the doctor said it, she said it so matter of factly it was well, you have Parkinson’s that came back it was an abnormal dat scan and I’m sitting there in it. did kind of finalize it, to hear somebody else say that, and then I just, I think we were holding hands. And just but inside just kind of crushed, because I knew what that or had an idea have an idea had an idea of what that would mean. And I still think this a lot like you are an amazing person. And I think if any of the two of us deserve to have this, I should have it. So it’s, it’s just hard.
So how have I changed? What’s changed? You’re here with me. You see me in at all stages? What are the biggest changes that you’ve seen in me?
Since the diagnosis?
Or the process began.
You’ve had other medical things in your life where it’s taken doctors a while to figure out what it is and so you already kind of don’t like going to them. As a kid. I thought oh, you go to the doctor. They look at you and they know exactly what’s wrong with you. They fix it and you discover the older you get that they’re just human beings. And they’re going based on what they learned and what they’ve seen before, that they’re not always going to have all the answers. And it’s unfortunate and it’s expensive to keep going from one to the other. So through a lot of this, I just saw a lot of frustration because the episode, I ain’t got time for that, like, I have a job, I have this I don’t have time to keep going to the doctor and to have this surgery done. And then that surgery done with with the carpal tunnel and the cubital tunnel, and then all the physical therapy and nothing’s working. And then that’s that frustration that but I still have to keep going because something’s wrong. That was kind of new for you in that area. Then since the diagnosis, we had both we’d both cried together with we’ve both talked about what corticobasal degeneration meant. And so I think in the week after that the the Parkinson’s diagnosis, it was a bit of a relief, like, Okay, I’m not looking at four and a half more years with you. I’m looking at For a long, long time with you, it’s just going to be different than what we maybe pictured our retirement being. But then there was there was definitely a period where I kind of felt like we were both just, what the heck do we do? My first thought I had told my parents, but my first thought was, well, we probably need to tell some people and you were very adamant. No, we don’t need to tell tell people and I totally understand why because it’s it’s exhausting. You are trying to process what the heck is going on, and the depression and the sadness and the anger and everything else that goes on there. When earth do you want to bring that up with somebody else and have to explain it to them. But for me, it was good that I told my parents and I call like my best friend from college and I told her just because I needed to be able to tell somebody I needed to know somebody was praying for us and my friend, my friend from college, her husband’s a doctor and so she’s been great about kind of saying, I talked to my husband and he says this, this this and, and she’s been great. She She texts me periodically just to check in with me. She sent me flowers about a month ago. Just swing. Yeah, it’s, I needed just a few core people that could kind of be supportive. When all this was started, you were still in this really stressful job as well. You see you, you’re kind of making some progress, you went out and got a new keyboard that made I remember that that was a big thing for you. And remember, you were surprised because you told the sales guy at the store that you had Parkinson’s, and that was kind of maybe a step for you that to help other people understand what you need. I think they’re a big portion of this. You were able to, at least during the day, I mean, you were always thinking about it because it was harder and harder for you to type but she were really plugged into I’ve got this project and they get get it done. I’m gonna get it done. And so I think I just kind of got plugged into, I’m going to get work done and darn it, we’ve got a pandemic and I’m going to homeschool our son and try to work from home and I kind of just put it to the side it kind of thought okay, he’s, he’s dealing with it. But I think a lot of changes have happened since the job has been lost because you and I have talked about You’re kind of further ahead than I am in processing this because it’s not easy. It’s not fun to process it, but it’s necessary. But since since the job has not been there, the things I’ve seen the most changes probably in a good way and that you’ve picked up walking very consistently. Every morning you get up super early. You spend time with the Lord, you go for this like three mile walk, you’re allowing yourself to take some naps, which used to be like a one day, a week thing on one one day on the weekend, you would take a nap, but now you’re letting yourself you know, when you have a low, you’re still not letting yourself sleep for very long. You set your alarm, too, but I understand also you want to sleep at night, doing this podcast has been been very helpful for you. It’s nice to see you. You need a project. You You do not do well without something meaningful to put yourself into right. And so it’s been you’re an artist and I know this is Like your ideal art?
Yeah, not in the classical sense. I’m not painting or drawing.
But he loves drama. He loves storytelling, acting and all these things. But this is maybe a little bit of an outlet for that, which is good. I think you just been become very, I don’t want to say hyper aware because I don’t think it’s bad. But you’ll say things like, Whoa, I paused for a really long time there. Before I talk to you or you started You were always a night owl. I mean, I’d go to bed at like 930. And I guess you came in at one? I don’t know.
It’s just Yeah, I was always up learning new stuff.
We’ve kind of slowly gotten into a more normal routine, but nighttime is still been pretty good for you. And that’s been a big switch, I would say in the last six months has been and then you’ve told me that if we’re going to have any kind of conversation, where I need to make sense and be able to put things together for you. It’s got to be in the morning. That’s been definitely a big change. I mean, besides the physical things that that’s been tough. You mentioned, I know that The envelope situation, open the envelope. And it’s a reminder to me that there will be days that you can do that. And then there’ll be maybe the next day, you can’t. But that doesn’t mean because today was I can’t do that day tomorrow is going to be the same.
But what about you? What are some of the biggest changes you’ve experienced for yourself? I guess a better way to say it is what are the biggest challenges from your point of view?
Well, right now, not a whole lot has changed for me technically, in that you still get up and get yourself breakfast and get yourself lunch. And I still periodically try to make something for dinner. And there’s not, there’s not been a huge change there. I think the change is having to be in my mind to know that it’s preparing myself that it’s going to need to change at some point, hopefully, very slowly, over many, many, many years. But just to be more emotionally prepared for that. When I go to the grocery store, trying to open packages already.
You’ve been so good about that.
Sometimes I forget but I see okay, well, this one’s empty, we’re gonna start on something new. Try to go ahead and open that up so that you’re not dealing with plastics and sticky tape and but I definitely rely on you telling me, Hey, I’m, this would be really helpful if you could do this. Now, other challenges, like we said a second ago, is just facing it. Because it’s much easier to say, Well, this is where we’re at right now. And we’re okay. But you have really handled this I think differently than most people. You’ve really gone at it head on and wanted to know what’s next. But I think mostly to try to figure out what can I do about this? So I’m not just passive passively experiencing this, which is encouraged me to say, what can I do and what can I encourage you to do?
Is that pushing you forward more than you’ve wanted to?
Initially? Yes. And you’ll probably have to remind me again. Sure, I’ll go back to Oh, we’re all cool. We’ve read this is the new normal, but this is it’s gonna stay this way and it’s okay and I’ll have to have a reminder.
How are you doing? How are you doing?
I think most days I’m doing, I’m doing well. So you’re a very good actor. So you may be doing terribly, almost every day. And I would not know it. It’s tough because I don’t want to let all the crud out. And I know there’s a balance because you don’t want you don’t want to be complaining all the time. And but on the days that you’re having a tough day, I have a tough day. And I don’t want you to not have tough days or Be honest with me, because you know, it affects me. But yeah, there are days where I do I cry out to God, I’m like, God, why? Which is a dumb question. I’m not gonna get the answer to it. But I keep thinking of all the, you know, I was telling a friend I was like, he is not just a good man. He’s not a great man. He’s He’s an incredible person. Of all the people that could get this you know, Why him? Why couldn’t I have it? I would God if I can have if I can wager with you. Let’s try
And that’s why I’m so glad that I have it compared to you. I really do. I would be in such a mess if I was looking in on you and not knowing what’s going on what’s what are you having to handle because you handle things so gracefully.
I don’t think I would be handling it as gracefully as you are handling it if we’re being honest, I I think I’d be burying my head in the sand but below several months ago, I went with my mom and dad to play bingo at this winery near their house. sounds super kind of fancy the winery but it’syes. It’s very quaint, actually. And I I remember coming home and being like, I could totally see you and i doing something like this when we retire. And you reminding me
That was terrible. Well I was just terrible.
But it was it was that?
Well, let’s explain it. Okay, you came home with this beautiful mentality of this is the way it’s going to be when we get older. How did you describe it?
I don’t I don’t even remember now I just it was so much fun because it was laid back. And you know, my parents go couple times a month, just the two of them and they play bingo and they drink wine and it’s fine. Yeah, they’re with the community of people and this that it’s so relaxing.
And here comes Daniel with “Honey..that’s just not gonna happen because I have Parkinson’s.”
He did. He did kind of say I did it, but it was for me. It was okay, I need to maybe I am in La La Land. I mean, retirement still feels a long way away to me anyway, but I’ve kind of got this picture what this is gonna look like and yeah, maybe maybe that’s gonna look a little different. I guess. Otherwise. I do wonder about the logistics of things. I think a lot about Okay, in 10 years, our son will be 21 if he’s gone to college, he’ll be in college. You know, where? Where are we going to be? What is your health gonna look like? We’re in a two story house. Do we need to move at what point Point these things all kind of float around in my head too. I guess that kind of comes into how are you doing?
On that note? How are you and the Lord doing?
Hmm? We have good good and bad days. There are a lot of days where I say why there’s a song by Mercy me. That’s, I believe it’s called What if or even if even every month, and every now and then I’ll put that on and just cry like a baby. Sorry. It’s the idea that God I know that you can fix this. But even if you don’t, you’re still gonna I’m still gonna praise you. And so yeah, that’s been that’s been tough coming to that place. And there are days I do better with it than others.
But one thing I was listening to another radio show, and it was a mother and her son and her son was born with with his cerebral palsy, and, but not so extremely can’t walk very well, but he can speak really well. His mother just talked about how She raised him and the strength that she got from the Lord to raise him and, and he’s a strong Christian. He’s married, he actually became a doctor early, which is amazing. It’s such an encouraging story.
And that got me to really start praying. I’m like, okay, God, if this is where we’re at, don’t let it be for nothing. Do something big. And I’m not talking like maybe 1000 people come to know you do third annual. And this testimony, I’m talking about millions. I’m like, I don’t want it to be something little because this, I’ll be honest, this sucks. And if it’s gonna suck, and it’s gonna stick around, let there be some huge big benefit. So on my good days, I’m able to make the say that prayer on a lot of days, I’m still going, please heal him. Please heal him. Please heal him will tell everybody high and low. We’ll get the two DAT scans and we’ll say look, this was the DAT scan you know from October 2019. And this is the DAT scan from yesterday. Only my God can do this. Yeah, so I go back and forth. And sometimes they wonder about our son. How, how is this going to affect him? Yeah, I want I don’t want him to see me on the days. So what I do my crying, I’m not with him. I don’t want him to see me on those days because I want him to see when I’m to see the faith that I know you can be healed, but even if he chooses not to, but I believe he’s going to do something.
And I want to thank Jana for coming into our studio and sharing her thoughts and opening up and being vulnerable to something that is not easy to talk about, and I know it had an impact on you, Daniel.
Oh, it really did. Just listening to it again. It’s humbling, and I’m just blown away by the bravery that she has the amount of courage it takes to stand up, grab my hand. And face this condition, trying to find a better word for it. But it’s wonderful to have her with me. And it was eye opening, to hear my wife’s point of view from the discovery of Parkinson’s to what her life now is with someone who has pleading. So this episode is very bitter sweet Brian.
And hopefully our audience got some value from it as well.
Bryan, this wraps up a very, very important episode a very important chapter. And today I was able to achieve one of my biggest goals, and that is hearing from my wife so that our son can hear how amazing she is. And also to share with our listeners which I am so grateful for them as well,
Indeed, and we’re looking forward to doing even more episodes and bringing them to our audience if you want to get in contact with us that in informations coming up, and just a moment. But Daniel, thank you for including me on this episode, and look forward to recording more with your brother as we progress forward, together and this journey of Parkinson’s disease.
Bryan, as always couldn’t have done this without you. And thanks for your courage for stepping up as well. Thank you, brother. Thanks for listening. Our email address is Parkinson’s and mi firstname.lastname@example.org toll free number to call for our voicemail, if you’re in the US is 768731656. If you’re listening to this in a podcast player, look down in the description and there is a direct link to where you can click the call or to take you directly to our podcasts the address. Also if you have the anchor app is a pretty cool app that you can find on Apple and Google’s app. stores. You can search for Parkinson’s and me on the app Tap on the podcast along the top right, you’ll see voice message tap on that and you can record a message and it will send it directly to us.