Navigating Dementia with Loved Ones – Susan Otten Joins Lisa for a Candid Talk

Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30+ years of experience as she guides you on a new path to a better relationship with those you care for. Here's Lisa.

Hello everybody. Welcome back to a new episode of The Truth, Lies Alzheimer's Show. I'm Lisa Skinner, your host. And today I have a very special guest joining me. I invited Susan to be my guest today because she actually has a very unique story to share with everybody. Not only is Susan's husband living with Parkinson's disease, but both of her parents lived with Alzheimer's disease. So, without further ado, I'm going to introduce Susan and welcome her to the show. Hi Susan, how are you today?

Really good, really good. I'm excited to be on the show. Thank you for the invitation.

You're very welcome. We're so happy to have you here. So let me just tell, um, our listeners a little bit about you and then we'll jump right into hearing your story. I think everybody's just, you know, uh, itching and scratching to hear your incredible story. So let me introduce properly Susan Otten to the show. And after a very successful 15-year career at Apple, Susan moved on to roles as a strategic consultant, business development and account executive, leader of branding and marketing with two global agricultural companies, and as COO for a behavioral health consulting company. Susan also founded and is currently the CEO of Indy Do Good— that's the name of her company— which is a logistics company supporting companies who do good in their communities and in the world. Now Susan took on a very interesting challenge. She personally committed to doing good and is one of less than 10 women her age to ever successfully thru-hike the 2,200-mile Appalachian Trail spanning from Maine to Georgia. And she set her goals firmly in cement. I'm going to say they were to raise Parkinson's awareness. Obviously, her husband has been living with it, I believe, for 15 years.

Mm-hmm.

And funds to honor him. And he was diagnosed with Parkinson's at the young age of 51. Be home by Christmas was her second goal. And her third goal was not to die. But you did suffer some pretty significant injuries, right?

Yeah, but, you know, all of those paled in comparison to, you know, the bigger goal, which is maybe why you set goals, right? You know?

Yeah, exactly right. What inspired you? You took your daughter with you.

Well, it kind of is the other way around. My daughter took me with— she was going to go with a really, really good friend. In fact, her soulmate will be her, her maid of honor this summer in her wedding. But that friend had to kind of change her mind and not go. And Mama Bear, her, was not going to let Baby Bear go out on the trail on her own because, A, it's a long way and there's a few scary things about it. So it worked better to have, you know, what do they say? Two are stronger than one and a cord of three cannot be broken. So we were those two that, you know, helped each other up when one fell down and kept each other warm at night and all of that. So, it was, it was much better to do it together. Yeah.

Wow. Well, kudos to you for making that treacherous trip. How did you go about raising awareness for Parkinson's disease on that?

Well, I think this was my daughter's idea too. There's not a whole lot I can take credit for except for, you know, finishing the trail. But she wanted to videotape our journey and we set up a YouTube It's Appalachian Trail for Parkinson's Disease. And we have 96 videos up there, including one that's like 56 minutes long of the whole trail. So, it's like, you know, but it tells the story. And if you don't have time to watch all 96, 95 episodes, you can just watch that one at the end.

So, when you were finally back home, were you home by Christmas?

We did make it home by Christmas. We had to speed up a little bit toward the end because the third hurricane was slamming into the East Coast and they come up from the Gulf. And so we finished in Georgia. We really went backwards because we started late in the year. We started July 15th. And so we had to hurry up because we used to live in Georgia and we had a lot of friends and stuff that were coming out to cheer us in. And we really didn't want them standing in the cold and the rain and the wind. We were kind of used to it by then, but for people that aren't, that's hard. So we did almost a marathon a day toward the end to make it, cut off a day to get in there earlier so that we could beat the hurricane. So, yeah.

Well, I am just completely bowled over and impressed that you were able to do that. And I'm sure it took a lot of determination. What was the biggest lesson you learned of that whole, uh, experience?

Yeah, there were so many. I mean, one, one big one is to take time for yourself. And for me, I get a lot of energy from nature. And so to be able to take that amount of time, you know, be confident that my team back home was running the business, that our son and daughter-in-law were taking care of my husband and, and our dog, you know, that was just a huge blessing to be able to recognize that that was, was very important. But also the fact that, um, The blessing of being able to spend that amount of time in God's nature to really think and process and, you know, cherish things was just something that, you know, a lot of people— I realize that I'm very, very, very fortunate to be able to have said that I could take that time off and do that work. And then, you know, the other big learning was— well, there was a number of them. I guess another one, though, I break them down into Tools, you got to have the right tools. And we learned that there's a lot of stuff you need, but you have to know how to use that stuff. So not only tools, but training. It doesn't make a difference that you might have the best sleep system in the world, but if you don't know how to put it together and make it comfortable for you at night, it's not doing its job. So training was really important. But the big thing was we learned that team really makes all the difference and the kindness and community along the trail that reached out to support us and help us. The people that shared our story to the point that we were on a blog on AARP that has 38 million members. So that was a way we were creating awareness. Our local TV station did 8 segments on us. And because of that and their outreach, we were picked up by CBS National News and had 2 broadcasts of our story on national news and just a bunch of things like that to the point that Michael J. The Fox Foundation, who was our platform for the donations. We picked that one because they do such amazing work and, and have a specific program for fundraising, but also the donations immediately go for research. It doesn't— didn't have to wait for us to finish the trail, which we didn't want to have to wait 5 and a half months for that money to start working. So it really, it really made an impact. And then they named us, um, their Rookies of the Year, which was very humbling because we made a little less than $100,000, but there was people that supporting Michael J. Fox Foundation. Um, the number one fundraiser raised $1.5 million in a one-day event. And I'm like, what am I doing on the trail for 5 and a half months? You know, they did this in one day. But, um, they've been doing it for 11 years and really have it down to a science. So it was pretty cool. Yeah.

What is your most, um, profound message that you want to share with people in terms of raising awareness about Parkinson's disease? Because Parkinson's disease is not as well known as Alzheimer's disease is. And, you know, it is a neurodegenerative disease, just like Alzheimer's disease. But what do you think is your biggest message or your most profound message that you want people to be aware of?

Right. Well, and That's another great question. It's similar to Parkinson's or to Alzheimer's in that the burden that falls to the caregivers is a lot. And I'm learning that as my husband advances with the condition. He also recently was ill, and the effects of being ill and taking antibiotics and the whole medication medley that you're on is is difficult and it's very specific and you can't eat at times and you have to eat at other times so you get your food in. And it really takes a very patient, astute caregiver, which I'm really not. I mean, I'm good at process. We have alarms set up on our phone and we have spreadsheets that my husband checks off when he takes stuff, if he remembers. I have alarms on my phone too that mirror his. But usually like 5 minutes later, hey, just checking in, how's your day going? Oh, did you take your meds? You know, because if you don't and then you eat something, you're not going to be able to walk, you know, in a few hours. So that's really hard. And then just the dance between, you know, the care you need to do for the mobility. And then some of that is contrary or conflicting with the care that's needed for the brain. And, you know, most people die from Parkinson's from falls. So you want to take care of the mobility, but gee, it would be really great if we could equally take care of the brain and not just treat the symptoms, you know, but that's really hard.

Yeah. Have there been any recent advances in the treatment of Parkinson's disease that have been life-changing?

Well, there's, when we were on trail, there were so many discoveries the year that we were on trail. It was like, wow, this is really, you know, this is amazing. And One was the identification of a biomarker, an actual protein that exists in people with Parkinson's. And so that's the good news. The kind of not great news is you got to identify it or grab the sample from a spinal tap, which isn't going to happen at every physical that you go into. But they're working on— I'm not sure that it's released, but I had signed up to do a study and on their permission, you know, documentation it had about the biomarker. And they're developing a skin scratch test to be able to identify that protein, which is less invasive than a blood sample. So soon we'll be able to do that, you know, skin scratch test at regular annual physicals. And even as a baseline, like when people become eligible for Medicare and they do that first wellness visit, You know, it'd be so great to have a baseline to see because symptoms don't really present themselves right away. So if you can, you know, get ahead of it. And probably one of the most exciting— well, let me just finish up on the medical side. So there's things like fecal transplants that they're experimenting with because the brain and the gut are so connected. So they're working on that. There's another one. I mean, deep brain stimulation has been around for a while, but they're continuing to perfect that. And I just saw an announcement yesterday from Michael J. Fox Foundation on that deep brain stimulation technology that's advancing. So some of them aren't new discoveries. Some are just new things within existing stuff, which is proven to work. But one of the things I'm excited about, maybe because I'm more exercise-focused than medication-focused, I'd love to be able to do things naturally and holistically. But you got to safe. And they're working on a lot of studies that have to do with exercise and pushing off the onset of the symptoms of Parkinson's. So if you're diagnosed, like, especially for early onset, if you're diagnosed before like 60, because age is like the number one risk factor. But if you're diagnosed earlier and you can stay on a really strong exercise plan that will help you to push off, they believe, the onset of the symptoms.

How exactly was your husband diagnosed with Parkinson's disease?

How was he? Yeah, a tremor, a tremor in his hand, in his right hand. It was the first symptom. Back then when he was diagnosed, there really, there wasn't a skin stretch or a biomarker or anything like that. It's, and even today, it continues to be a diagnostic discussion. So, your primary care physician has to refer you to a neurologist, and then they will do a discussion and take—

So it's like Alzheimer's disease. It's kind of a process of elimination. There's no definitive test yet. Yeah. I read something recently about a gentleman who had one of these new spinal tap blood tests and claims that he was given a positive diagnosis for Alzheimer's disease.

Okay.

And that's the first time I've heard that, because in the past we've always been told that the only way you can conclusively or definitively diagnose Alzheimer's disease is upon an autopsy. But the, the, you know, the problem with that is not every single person who lives with Alzheimer's disease has the plaques and tangles that show up in the brain. Yeah, there are people, documented people, that had symptoms of dementia And they participated in studies. There's the Nun Study, and then there was another one of retirees in Florida that all of these people were followed for like 10 years from the onset of their symptoms to, um, after their death. And they all agreed to participate in the study which would allow the medical professionals to autopsy their brains. And the thing that was really interesting was some of the people who were part of the study that were asymptomatic actually had plaques and tangles in their brains. And conversely, some of the people that were symptomatic of the dementia symptoms had no plaques and tangles in their brain. So, it's really still an anomaly to us. And I know that Parkinson's disease does damage parts of the brain, but what's the hallmark for Parkinson's disease that they can— do they have the capability of doing an autopsy and then actually saying, oh yeah, this is Parkinson's disease, like they do with Alzheimer's?

I don't know if that exists. I mean, it's cells in the brain that produce dopamine that die, and they don't know why they die. And without dopamine, the dopamine is literally suffocating the brain cells. No, it's the brain cells that produce the dopamine die. So there's not enough dopamine being produced. So that's what affects the mobility and then cognition. You know, how do you tell if the cells in the brain are dying, if, you know, other than the symptoms? But now we have the biomarker alpha-synuclein we can test for. But still, you're not going to do a spinal tap just for the fun of it. No, it's very painful. Yeah. And then it would be really, you're going to treat the symptoms anyway, or you're going to start to do some of the things that they know improve. You know, it's not conclusive on the exercise, but Ron and I, my husband Ron and I did a study, I think it was last month, early March at University of Minnesota because they have a great research program there for Parkinson's. And they were doing mobility testing and it was remarkable. I mean, just like, and I was the control and Ron did it and we did, walked figure eights for about an hour, two different cadences, and it was— and you had to keep up with the cadence. So, you know, if as the, as the, as the tone went faster, you had to go faster and stuff like that. And it was weird because when the tone changed, I started to feel it in my brain. I didn't even have to like think about it. And it was just like, it was almost like a knob had been turned. I could feel it in my brain. And then, you know, the speed, I adjusted my speed, but it. I guess I adjusted it, but it was like, it was almost involuntary. It was really cool. And that one of the triggers, if, if you're frozen, which is a mobility issue where your feet feel like they're stuck to the floor, is to do a cadence and tap like the side of your leg and, and listen to that. And over time, you can help train your brain to move again. So if you're stuck, and you want to get going, if you tap that cadence in the same rhythm of what you would walk, sometimes it works and you can walk. But I keep telling my husband when he's frozen that to try it, and you have to remember to try it. You have to believe it's going to work, mind over matter kind of stuff. So it's hard.

You mentioned, or we mentioned, that that your husband has been symptomatic with Parkinson's disease for 15 years now. He was diagnosed at 51.

Yeah.

So, that's a long time to live with a disease. We know Michael J. Fox has been living with it for over 30 years.

Yeah, right.

What is the average period of time that people—

I think most people are diagnosed after 60, and it's I don't know what the average lifespan is after diagnosis, but the sad thing is my husband is really raging healthy physically. I mean, he does work out. He's always been athletic. He got on the stair climber yesterday for an hour, and I'm like, that's not the kind of exercise that they say works. That doesn't stimulate dopamine. You got to do it fast and intense. 10 minutes and you should be dripping sweat, you know. But he— you got to do what works for you. And I can tell him all day long, but, you know, he's the one that's working on—

can dopamine be supplemented with medication?

I don't think so. No.

Okay. That's interesting. The other thing that's unique about Parkinson's disease that I'm not sure a lot of people are aware of is some people develop dementia with Parkinson's disease. I, if I remember correctly, your husband does not have the dementia component to it yet, right?

Well, I would've said yes a month ago. There's been a lot physically and, you know, with him that's been going on. I'm not sure. I mean, it's not dementia like my parents experienced it, but also, I wasn't living with my parents when they first started having dementia. And, you know, it escalates over time. There are things with Parkinson's that are similar that are symptoms like forgetting words, not knowing, you know, knowing that I'm his wife, but not knowing my name. And that's kind of dementia stuff. Just kind of general forgetfulness. Like I get nervous when I'm not home and he's caring for our dog. Is he going to remember to let the dog back in, you know, that kind of stuff. So I, I try to train him to always put her leash and collar on and walk her, you know, so that would be easier to remember to bring her in with him if he walked her versus opening the door and letting her go outside. So.

Well, one of the things that I learned through my research about Parkinson's disease, 'cause I was curious, why do some people develop dementia and why do some people not? Yeah. And Michael J. Fox, as of today, does not have the dementia component, but he's still, you know, a relatively young man. I mean, he's in his early 60s now. I think your husband's in his late 60s, right? Yeah. The number one factor for developing the dementia component to Parkinson's disease is age. So, the risk becomes higher the older a person is who's living with Parkinson's disease. So, it could show up still in 10, 15 more years. Yeah.

Well, and that's almost the same risk factor too for dementia for just the general population too. It is.

Age is the number one risk factor. Yeah.

And that's kind of hard to separate. Is this a Parkinson's thing or is this just, you know, an old age thing, you know. And then that's hard. And we don't really have anything to treat dementia either. I mean, you can— there's memory games and things like that you can do if you can remember to do them, you know, kind of thing. And, you know, activities and stuff like that. But it doesn't cure it, you know.

There's no known cure today yet. But, and I kind of, that's a good segue into, because you're, you've been in a very unique position that a lot of people probably, you know, can't even relate to. But in addition to your husband living with Parkinson's disease for the last 15 years, both your parents lived with Alzheimer's disease. Yeah. Um, did they have it at the same time?

No. And this was interesting because my theory is, um, growing up on a farm and the farm chemicals. And, um, so my— but my mom didn't— my mom was a city gal. Um, they met at a square dance at the University of Minnesota, so it wasn't like she didn't really go outside. But you know what she did do was wash my dad's chemical-soaked laundry, and so she still was exposed to it. And my mom—

and they both end up with it. Yeah.

And she's tiny. And just, I don't know, if you looked at the percent of chemical fumes to that little body versus, like, my dad, who wasn't a huge guy, but certainly bigger than her by quite a bit. So, I mean, that's my theory that it's chemicals. And now that I know that's what she had and I think back, Um, she would have to write everything on the calendar, you know, like, I have to get groceries, I have to, you know, do laundry, I have to go to town, I have a church meeting, you know, every, every single thing, not just appointments, but, you know, what you, you and I would think of as everyday tasks.

And so what— who, who started showing the symptoms first?

My mom.

Oh, your mom. Yeah. And at first, the very first time that you kind of suspected maybe something was happening with her cognitive health, did you— was it blatantly obvious to you, or did you think maybe it was just normal aging forgetfulness? Did you think it was maybe be a little bit more severe than that, like mild cognitive impairment, because a lot of people don't show symptoms. They can have it, you know, going on in their brain for 10 years, right, and not show any symptoms. So what were your first indications that she was having problems? It was— was it what you were just describing, having to take notes about everything, or—

and we did not live close by, we were out of state. Um, after I got married, my husband was already living in Chicago and I moved to Chicago. And so when we would come home, the, the progression was dramatic. It's not like you saw him every day and it's just a little bit of decline every day. No, I mean, if you do that little bit of decline and you only see him here and here, then it's, you know, changed so much. So, um, and then things started to make sense. Oh, that's why she's writing stuff on the calendar. That's why she's taking all these notes. When we have a phone call. And, you know, so then it started to make sense. And then as it continued, um, my sister also lives out of state, and we came home for Thanksgiving one time, and we had planned that we were going to have a conversation with them, that it was really time to think about moving off the farm and getting someplace easier. And I'm not sure if memory care was a thing back then, but, um, you know, my dad was vehemently opposed to it because he was not affected. He wasn't going to move in a tiny apartment in town growing up on a farm, you know, all his life. And so my sister and I said, well, you know, we've planted the seed, we'll just keep talking about it. And really we realized that it's going to take a catastrophic event to have, you know, kind of force them off the farm. And not long after that, my mom fell and broke her arm really high. And this is one thing growing up on the farm, you never went to the doctor unless there was blood involved. Doesn't matter how sick you are or how hurting you are or anything. No, if there's no blood involved, you don't go to the doctor. And you never, ever, ever go to the doctor on Sunday. And I have the scar to show it where I almost cut my finger off, and that was on a Sunday, and I didn't go in till the next day, and it was too late to stitch it up. But my mom fell, and my dad didn't take her to the doctor because no blood was involved. And, um, but she was using a walker by that time, and she couldn't use that arm, so she's now an increased fall risk. And, um, I don't know what the, the deal was. The finally got him to take her in. But then she was, oh my gosh, it's broken really high. And she had to have one of those splint things that held the arm to the body. And now she can't navigate without that, with the walker without. So that forced her into rehab care. And so my dad is okay with that, mom needs it. But then he started getting lost. He couldn't get from the farm to the rehab. Care center to visit her and back again without getting lost. And the police started noticing that, you know, this was happening. Then he lost his license. You know, it just kind of was the progression of stuff. Then we had—

Domino effect.

Yeah, exactly. And again, he didn't want to move into care, so we got a live-in, and that was like the next step in, you know, kind of the progression of the disease, because my mom certainly couldn't cook or take care of the house or anything.

So Susan, we're about out of time, but But one of the couple of things that I wanted to give you an opportunity to share with our audience before we wrap this up completely is, and I, I ask all of my guests this, if there is one thing that you learned from, you know, we always say hindsight is 20/20, right? Um, one thing that you have learned through— this incredible journey that you've been on with your mother and then your father and your husband that you would like to share that may help somebody who either will be dealing with this in the future or is currently going through this with a loved one, or they're caring for people with one of these diseases that causes dementia, is there anything that you've learned that you wish you had known from the very beginning?

Right, right. Well, one thing that was really evident to me when my parents were getting care and they were now moved into facility, you know, my dad was a farmer, a hardworking guy, and his only hobbies were hunting and fishing. And you know what, they weren't going to give him a gun in the, in the care facility. And my mom, on the other hand, loved art and music, and so she could do a lot of her hobbies. And that was, that was kind of what the activities director was doing. And so I think I would have tried to get my dad some kind of hobby that he would have enjoyed doing. And he loved woodworking, but again, he's not going to have a lathe or a big belt sander or, you know, the jigsaw and stuff like that. So anything that he could have done with his hands, it would have been helpful to have activities that were meaningful to him, that he enjoyed, that would trigger memories, you know, that we could talk about. My mom, on the other hand, loved, loved art and music. And my dad had to be controlled with medication. They wanted to do the same thing for my mom. She was really anxious. And, um, and I said, well, let's, let's try music therapy. And that works so well.

Oh, it's a blessing. It is a miracle. A miracle worker. I've seen it in the 30 years that I've been working with people living with these diseases and family members. I have just seen unbelievable miracles happen through music. And I practice a person-centered approach to care. I'm a certified dementia care practitioner, and my expertise is in person-centered care. And that's exactly what you're talking about is creating activities and a life that is centered around each individual person rather than just kind of more broad-based around the disease, like finding things that your dad would have resonated with.

Right.

So that said, I think that's wonderful, wonderful piece of advice because we know through scientific studies and research that it makes a huge difference in the quality of a person's life.

So much.

Yeah.

So much. In fact, I was with my mom the afternoon before she passed away that night, and I said, okay, Mom, I got to go. And she was pretty much just laying in bed in a fetal position and not really aware that I was there. And I'm like, okay, I'm going to put your music on. And as soon as I put the music on, she started moving her lips, singing along with the—

I love it.

Yeah, it was so sweet. So sweet. And I, you know, put some great Christian old hymns on that she knew every word from the Lutheran, Lutheran hymnal, and she was singing along, you know, ready to go home to Jesus. It was great.

Oh, do you have a website that you can share with us that people might know how to find you and how to contact you?

Yeah, it's SusanOttin Presents and dot com. And I think by the time this episode airs, The website should be done this week and it'll be fine. It'll be perfect timing. If you can go ahead and share it and we'll just trust that it's done like we think it's going to be done.

So, awesome. Well, I can't tell you what a dynamic discussion this has been, and I hope my listeners have learned a lot about Parkinson's disease and maybe be a little bit of parallels between Alzheimer's and Parkinson's disease. There are so many similarities that— Yeah.

You know, one thing I was thinking about when we were talking that I think is also valuable as far as advice or something, it, it, the kind of mentality or the place that both my parents were in as they went through the dementia and, you know, continued to progress. And I'm seeing kind of some similarities with my husband, but With Alzheimer's, it seems like they were really regressing mentally in age. You know, first they were like kind of radical, crazy teenagers, and then they were like, okay, a little bit calmer, elementary school, and then they, you know, became preschool and toddlers, you know? And that's kind of how it seemed to me they were at mentally. And once I kind of realized that, it made the care for them easier because I wouldn't treat 'em like mom and dad.

I would treat them like, where they were at, where they were living in their previous timeframe of their life. Exactly. Right.

Yeah.

And this is what happens to people with Alzheimer's. Yeah.

You know, and to even bring back memories from that period, you know, my dad being a farmer, it's like, well, he had this old car that he really loved and you know, we were at the state fair and we saw a car like that and I'm like, dad, remember the car you had when you were a teenager and you were so proud and you were standing next to it and he took kind of a weird posture when he, when the picture was taken, like in, I don't know, 19— 35 or whatever it was. And I'm like, can you stand by this car? Look, it's just like the car that you had. And he went over there and he assumed the exact same weird posture. It was remarkable that he remembered and he remembered the car.

So just giving people those kind of opportunities to reminisce and connect with their being. Well, unfortunately, we are out of time. I want to thank you again for being here. It was a pleasure to have you. It was a pleasure to have this discussion with you. So, I want to conclude by thanking everybody for being here and spending a part of your day with me and with Susan Otten. And we'll be back next week with another new episode of The Truth, Lies Alzheimer's Show. With me, Lisa Skinner, your host. So have a happy and healthy week and look forward to having you back next week. Take care for now. Bye-bye.

Thank you for listening to Truth, Lies Alzheimer's. We hope you found something in today's episode that helps. We understand that caring for a loved one with dementia can be the challenge of a lifetime. But you don't have to do it alone. If you're ready for exclusive access to even more great content and resources, head on over to Facebook and join Lisa Skinner's Minding Dementia support group. We're a community of like-minded caregivers, and we're here to help.