Luke Jackson and Laura Jackson

00:05 My name is Laura you clean Jackson and I am 33 years old. Today's date is July 19th, 2013. We're in Cheyenne, Wyoming and I'm here with my husband Luke Jackson.

00:23 My name is Luke Jackson and I'm age 31 today's date is July 19th to 2013 and we are in Cheyenne Wyoming and my wife Laura Jackson's there viewing me. All right, so Luke, you know that I wanted to come here today so that we could talk about how Alzheimer's specifically early onset. Alzheimer's has affected our lives. So why don't you start by telling me more about the disease that runs in your family?

01:02 Sure. Well, my family actually has what we know we consider family curse and more specifically. We have a genetic mutation in the Priscilla to Gene on chromosome 1 which causes early onset Alzheimer's

01:23 How it affected me personally is if my mother is currently 57 years old and she was officially diagnosed with Alzheimer's three years ago, but we truly believe she had been showing symptoms of three to four years prior so would put her around age 50.

01:44 Okay, and who else in your family has been diagnosed with the Earth who else has had the Gene and I so as I've said just this is a family curse. So it's been passed down this mutated Gene from generation to generation. And so my mother brother Rod Walter also was diagnosed with early-onset Alzheimer's at the age of 49 years old.

02:15 Rod and my mother Jane Harris is her name were both born with the 50% risk for the early onset Alzheimer's because their father or my grandfather had it.

02:29 And as well as my grandfather, he had two sisters who had early onset Alzheimers and a few cousins with the chain and it was ultimately passed down from his mother. Okay?

02:45 Do you know any more about?

02:51 Well, why don't you tell me about kind of where does this Gene genetic mutation began because there's researchers that know where it started. And yeah, so as I've tracked my family history and this mutated Gene specifically actually goes back to the Volga River Region, which is in Russia and the my family is German Russian immigrants from this region. And the weird thing about this region is that this mutation has been wrap ramp it any and has ancestors from this region. There are 11 distinct families that migrated from this region.

03:36 And it's led to a hundred and forty six cases of early onset Alzheimer's begin the Surly in the mid-30s age of individuals, but usually hits in the early 50s, okay.

03:52 So you mentioned that your uncle was diagnosed with it and had it and he passed away from it. Can you tell me more about him and your relationship with him? Sure.

04:06 Rod hold special place in my heart because I take a lot of my current characteristics from him. So is obviously very sad to see him go. I believe he passed away about 3 years ago, but a lot of my true Hobbies or true love's of life like fishing and

04:28 Sports and baseball and football. He was like a lot of those characteristics from him.

04:37 And I'm truly miss him but he was a big fisherman and taught me everything I know about fishing and he was a very neat guy. He was a science teacher and Nebraska and his also the football coach for the high school team. So he was he was he naked and he passed away. What was his age to remember? I think he was 60.

05:05 He'll run so early sixties though, and he had been battling all the timer's over.

05:13 For about the over 10 years, so

05:18 I was too bad. Yeah, that was as a really sad funeral.

05:27 All right. So, when did you first learn that early onset Alzheimer's runs in your family?

05:38 My furthest memory probably goes back.

05:42 So when I was six seven eight years old when we used to visit my my grandfather who at this stage was late-stage Alzheimer's we believe he was diagnosed around 45 to 47 years old, so

06:00 When I was six or seven, I remember visiting him in this home, that's one of my earliest memories and obviously he wasn't functioning much but that is when I learned that he had Alzheimer's and

06:13 Of course, you know I was a kid. It didn't really hit again until my uncle was diagnosed.

06:22 And this would have been late 1990s, I believe.

06:28 Or mid-1990s. So that's when it really affected my life truly and then of course more centrally with my mother diagnosed about 3 years ago.

06:44 So how did you feel when you first found out that this early onset Alzheimer's runs in your family in that, you know, there's kind of in that you might be at risk and this is before you learn your mom had it so you weren't quite sure what your risk was. Well truthfully. I didn't really realize the genetic implication that this could potentially hit me until my mom had a I guess I never thought of it that way, but of course when my mom was diagnosed

07:22 It was right there in the light of day that now potentially I could be diagnosed. And so it turns out that myself in my sister my younger sister have a 50-50 shot of getting it and so of course.

07:39 Kind of felt kind of selfish because when my mom was diagnosed, I I thought of myself and I feel kind of guilty about that. But you know, I myself I'm 31 years old now, but 45 is is only 10-15 years away. So I had to think that now this disease is staring me in the face was pretty impactful. Of course, you know, I was sad about my mother but I do feel kind of selfish cuz I found myself and and you as well as my wife and what that meant for our lives, right?

08:27 Right. Well, I think everybody kind of I know that your dad felt awful your I'm sure your mom she felt guilty because you know, when they had you and your sister they never even thought that better might be a possibility. They might be passing this terrible disease down.

08:52 So I think everybody just felt bad.

08:56 No more guilty. So question for you is when you learn this, obviously we've been together for almost nine years or we've known each other for nine years when you found out I had the potential get this disease. How did you feel?

09:15 I was really scared.

09:24 And

09:26 You know, I my next question was tell me about when you found out your mom has a disease. So I'll just talk a little bit about that because I know how you found out. Your mom has a disease. I told you because your dad who you're not your mom your dad are divorced, but your dad called me and did not know how to tell you that your mom was diagnosed with Alzheimer's at the age of 52 and

09:57 When he told me that I just first I didn't know how to tell you and I remember it was like the most serious conversation we've ever had to have with each other and

10:09 I just felt like

10:14 Kind of like it was

10:18 Not what kind of like it was standing in our way before we could.

10:23 Go on with our lives, you know, I mean, I think that before before we knew your mom had it.

10:33 We were planning to have children or we are at least that was like a pretty big possibility and you know life just seemed kind of free and easy and when this happened when your mom was diagnosed it just me and not only do we need to make sure your mom has everything she needs and we're worried about your mom and how she's going to have a disease is going to progress and we had no idea what was going to happen. But we also have to worry about you getting the disease in 10, 15 20 years, you know, not that not that far down the road and

11:17 It was kind of depressing. It was really depressing. Just thinking about our future, you know, if you've got it then what does that mean for us? And what does that mean for our future and it was really scary and depressing and

11:36 Yeah, I didn't have a lot of Hope.

11:39 Yeah, see I can't have different reaction when you told me that day. I I was obviously more worried about you than I was myself cuz whatever is going to happen is going to happen. Maybe I'm more of a not worrier than you are actually no honor. I don't worry as much as you do. So I was more, you know worried about your feelings and and what you thought this meant for our future well and you know, I was worried about my future and that again like there's that guilt there. Like I need to be worrying about you and your mom and there I am and I and I it was but also a part of me was worried about you know, what if I'm alone when I'm fifty or was it, you know taking care of you for 10-12 years, you know having to put you in a home like thinking all those things.

12:32 I don't know how people do that. So it's pretty safe to say we're both pretty selfish about our future. Yeah.

12:46 Yeah, I agree with that.

12:50 So you mentioned that.

12:55 The earlier you mentioned that you and your mom was diagnosed in 2010, but you think that she had it.

13:05 Before that

13:09 Did you know that what what signs did you notice that she might have it? You know what we'll talk about that more specifically my stepdad and Andy Harris had noticed some things that were off. It didn't come till after I learned his diagnosis that I could think back and remember some some kind of some strange instances with her as early as her late 40s in a 47 48 49 years old when instant in particular sticks out my mind and

13:45 My mother had driven to the mall and coming home and got into a car accident that just with another car to stop play. It wasn't serious or anything like that. It was more of a fender bender but the what was weird about the circumstances the my mother swore, you know, she had a green light and went and the end of the other party in a car accident, you know completely different story then possibly my mom went, you know, red just out of the blue when there was a clearing not even thinking then

14:25 Of course didn't think of anything at the time that was weird, you know, just you know one person blame another for a car accident but you know, I've since heard but you know, sometimes there can be a lapse in early Alzheimer has elapsed that it's someone will do something without even thinking and and there's been no reports of Phoenix pulled right out in front of a train that railroad tracks with people who are suffering this early onset Alzheimers without even thinking or looking out the window and looking for a train so that particular instance was fishy you no looking back.

15:09 Yeah, and of course, you know, I remember in 07 when she visited us and Boston and she will she she didn't Rent-A-Car I got wasn't even an option at that point, you know for her to to drive and she had her outgoing flight was from like Rhode Island from Providence and she like neglected to tell us that until the night before and you know, that's a 2-hour drive and I got mad at her cuz I was like, why didn't you tell us about this but I feel like that was

15:52 Kind of that was a that was a red flag now sent them but certainly so I mean, it's definitely possible that she's been was coping with some Alzheimer symptoms as early as 2005 when she was

16:12 You know, 45 46 47 years old so I might

16:20 So

16:22 Tell me more about your mom. Like what's your favorite memory of her?

16:30 Well, I don't know if I yeah, I guess this would be a favorite memory is after her and my father had split up, you know, my mother was instrumental in raising my sister and myself Central alone as a single parent with the little little no help from my father. So

16:53 You know, I that's probably one of the things that stands out there for those few years between when my father left my mother and when we ultimately move to Colorado and she met Andy it was a. Of 223 years there where you know, she would do anything for my sister and I

17:15 And I did really well raised as a single parent so

17:20 Now

17:23 Okay.

17:26 So let's talk more about you getting tested.

17:34 Because for the the specific mutation there is a genetics test that you can get to determine if you have a gene or not. So why did you decide when did you decide to get tested and why will back backing up a few steps light? I didn't know specifically that there was such a thing as genetic testing until shortly after my mom was diagnosed in 2010 to confirm her condition. They gave her to next test turns out that there has been a research.

18:13 Alzheimer's research going on for my family because of this family curse from this folga River Region Russia and so my grandfather and then Uncle participated with this doctor in the University of Washington. And so they they've kind of been following my family on but unbeknownst to me at the time. So when my mother was showing symptoms and they decide to give her that genetics testing that that's when I came you no right to me that you can test for this house that possible and

18:52 But once I learned there was a test and you know, it's it takes a simple blood draw and you're going to have the results and four to six weeks of whether you have this mutated gene or not, You're going to know whether you're going to have the disease like I knew right away that I was going to take the test that I wanted to take the test.

19:14 There was no hesitation on my part. So why what what were the results give you?

19:22 The results of give me everything at this point in my life and I'm in my early thirties have hopefully a long life ahead of me with you Tickler. It would mean implications to having kids, too.

19:41 You know it if I'm going to have Alzheimers and 15 years, you know, why would we work? Why wouldn't we would just move to a deserted island somewhere and on a beach, you know cash out our life savings that we saved to this point and and you know live the last 15 years or 20 years to the fullest. So all these things are going through my head, but I wanted to know so I basically so I can plan cuz I'm a planner. I'm an accountant and that's my profession. I have to plan everything.

20:18 And you know, it was crucial from for me to know.

20:25 Yeah.

20:27 Oh great. So you mentioned a little bit about the process but you make the process sound easy. What really was the process to get tested?

20:37 Well when I learned some 2010i I was like, okay. Well, I'm ready to go get tested. So

20:43 I was like, let's just do this. Well life got in the way, you know those between 2010 and

20:51 I guess earlier this year in 2013. You know, we were working hard or careers are just starting I so it kind of fell off scope a little bit and so

21:05 Finally went to hit this year. We may have come a New Year's resolution. That was the thing on top of our list was to complete the test.

21:14 And so I made a few phone calls or more specifically to who had taken my mom's test at the University of Washington.

21:26 It turns out there. There is an expert in early onset Alzheimer's who is it to University of Washington by the name of Thomas bird and he is the one who's been tracking my family for about the last 30 years. He's been tracking these families from the Volga River in particular for the last 30 to 40 years. He's been studying up. What why is this section of the world producing this meet a gene has been following the effects of the immigrants who immigrated from this region and

22:06 You know how it's affected the lives on down the generations. So some a few phone calls and got in touch with his assistant at this point in 2013 my stepfather and my mother had already been in contact with him because they were researching Alzheimer's from when my uncle got it in the late 1990s. So they'd already been in touch with dr. Berg and so he was the first step until I got in touch with his assistant and when I did, you know, I laid out our story or a brief excerpt of our story and that we wanted to get tested and

22:50 And she said that's great. We'd be you know interested in and looking into this. Let me give you a call back and let me see where I can where you can potentially get tested. So she calls me back about day later. And she says well there is a a place to get tested within a hundred miles down in CU Denver. I believe it was but they're backed up for 11 months. And at this time we're talkin, this is January February of this year. I said that's that's not going to work and I want to get tested now, so she may be offered to potentially fly out to Seattle.

23:34 And meet with doctor bird personally and dark some genetic counseling which they like to do before you actually get tested and take the test right there on the spot. So that's what we decided to do and so in early March we flew out to Seattle, right? So let's talk more about

23:58 That day that we went and saw Doctor bird at the University of Washington.

24:06 But you said it was March 2013 went to Seattle for it. We being us made a vacation out of it. And so we spent time in the San Juan Islands in Seattle. And then it's our last day right before we flew out that evening was our appointment with doctor bird.

24:31 Tell me about that experience.

24:34 Sure. I didn't really know what to expect going there. You know, was it going to be quick and you know what? I just

24:46 Talked briefly about you know, what were feeling and turn to the genetic counseling and gives a drug test and push this out the door or what it was but how it actually turned out is Doctor bird brought into his younger assistance and met with us for quite a while and answered all of our questions. It was over an hour of just talking.

25:13 You know about us and my family my mom and particular how she's doing.

25:18 Talked about you know, the implications of contested do we understand what we're doing will we be able to handle the results and four to six weeks know how will they deliver the results would we have to go back up to Seattle or how would they deliver them? Do we have life insurance and long-term planning Insurance Wichita point, you know you and I done our research and so we did have long-term care insurance in a huge life insurance policy. So we thought we were all set there right now, but

25:54 So it was it was a great experience doctor bird knew all about my family and we talked about my uncle little bit talked about working with my step. Dad my mom.

26:04 And talked about in the oldest unique unique families have emigrated from the Volga River Region and how he's been tracking them and he showed us a huge research papers written on them and it turns out he's been given talks about this Boca River Region going back to the early 80s and so it was a unique experience talking with him and it was it was informative been to because you know, what our age you go to the doctors and you wait around for an hour and they meet with you for 15 minutes and they send you on your way. But here it was I felt like we got the Royal Rolls-Royce treatment kind of, you know, just with the team of doctors that met with us and

27:01 Just how you know and we are meeting with an expert in the field. And so when we left I felt better about things. How did you feel when we after that meeting?

27:17 Well, I felt.

27:20 Well

27:22 You know when the key thing said talk to bird said during our interview and the thing that I took away from it is said when he started, you know studying Alzheimer's he didn't think there would be any treatment or cure in his lifetime or probably our lifetimes and that was your 15-20 years ago. You thought that but now where he was today? He he strongly believes that there will be treatment for Alzheimer's within the next 10 to 15 years and that of course trick of court of both of us because that would be the time frame that you know, if I had this mutated Gene that I would start to develop the disease.

28:06 Right. He said that he even thought there be a cure for it not just treatment. So that that was one thing I took away was luring there. You know, this is the lien Alzheimer doctor in the country and he thought there would be a cure or treatment for it and next 10 to 15 years. That was that was eye-opening obviously.

28:30 The other thing, you know how I felt or they took away from that hold doctor's appointment and they of course then Drew my blood for the actual genetic testing to send that off to a lab is I was fairly certain. I I had it. I don't know. It was just a feeling that you know, even though it's a flip of a coin. It's fifty-fifty that I would have the disease but I also feel strongly that after him saying about the treatment to cure that I'd be one of the first people cured of Alzheimer ultimately. So I the kind of a silly childish thing to think but I did walk away from that mean knowing that I probably had all the timers.

29:17 Can I ask a clarifying question? Yes.

29:20 The actual test when you go and get it will determine whether you have the disease or whether you're at risk to get it good question. It will determine if I have the mutated Gene. And if I had the mutated Gene, I would get it 100% early. Also Alzheimer's down the line if you have yeah, yeah.

29:52 Right. Okay. So yeah. So while we both thought that you definitely had the vagine and that was kind of a I think that you know thinking that you're going to be one of the first people to be cured of it was kind of a way to turn a really

30:15 Bad situation into a hopeful one because I remember sitting there talking with you and we're saying you're going to be the first person cured and now we're going to get through this and all that even before we knew the results.

30:36 Okay, so

30:44 I want to see.

30:46 Yeah, alright, so what so let's talk about the day that we got the results.

30:51 Sure. Well, it was about 3 to 4 weeks I believe.

30:59 That the doctor's assistant doctor bird assistant called me and said the results were in.

31:08 But you know because of the genetic counseling and and how they weren't sure we would handle the results. They would strongly encourage just to meet with the local doctor here in Cheyenne and we were going to set up a conference call which was unique. They don't like to do that and they obviously like to meet with you in person for both the test in the genetic counseling and then the results but it just wasn't feasible to go back out there to Seattle and we reassured them that we could handle the results and we are expecting the positive test. Anyways send so I set up an appointment with a local doctor here in town who I I don't have a primary doctor. I'm pretty healthy. So that was how to get Primary Care establishing and meet with this doctor, you know before we got the results, so

32:06 So is literally a week or two earlier. I met with this doctor and talk to Janssen here in Cheyenne and

32:14 That was then went over to stud over all history and and he was aware of the conference call or the test results coming up and and he would be happy to facilitate the conference call and sell.

32:29 Okay, so we'll meet with you in a couple weeks. So we learned from Doctor bird systems that the results are in so I make an appointment with primary care doctor for the following week or something like that. And so yeah, so then we

32:46 The big day came. I don't remember if it was a Thursday or Friday to you Thursday, April 4th.

32:53 It's Thursday. And so we went together to our local doctor.

33:00 And checked in for this conference call That was supposed to Star I believe at 3 p.m. And you know, we got there and playing time in the Vans to 45 to 50 and hand. So where it's there in the waiting room and we're saying there in the waiting room and sitting there and saying there's some more and they're they're not coming to get us 3 p.m. Comes and goes 310 comes and goes finally around 3:15. They come and take us to the back and put us a room and

33:34 At that point of course all both our nerves are sky-high. So I'm jittery and they want to weigh me and make your blood pressure high blood pressure. And I'm just like, you know, I'm supposed to be on a conference call 15 minutes ago. You need to learn some important results and

33:54 Traditional Cheyenne Wyoming fashion. They said no idea what was going on.

34:00 So finally they they take us to a room where there's good old ghetto looking conference telephone on the edge of a desk and Doctor chance and still not there and spout 320. And of course were completely on edge at this point and probably starting to get a little bit mad but finally doctor chance it comes in and he he apologized for being late but you know, he'd forgotten kind of there was a conference call and say say, oh, okay we get we are call these guys and

34:34 And so we call in.

34:37 And the audio is not very good. You can barely hear anything. So they fix that up a little bit and

34:48 So we called the assistant of doctor bird and she says, oh great, you know, we've been expecting your call obviously and so she was like, okay, let me go grab talk to bird. And so she goes and grabs doctor bird and a doctor bird comes on and

35:08 And I can't remember the exact wording. Maybe you can but there was something to the effect of you know, we don't like to let people wait around for these results at all. So I'm just got cut right down to the chase offers. He did explain, you know, what a high-level why we were there explain the doctor chance and you know what this test is for but he cut pretty much down to the chasing says Luke you do not have the mutated genes. So of course from that point on it was pure Emporia. We're happy Laura is breaking down and crying and it was it was a wild moment in that spare office in the back of the hospital somewhere.

35:57 Right. Dr. Jansen. I kind of feel bad that this point I feel like I'm older than him. He's a young guy. He's probably in his late twenties or early thirties around my age and he had no idea, you know, the gravity of the situation or he didn't know what to say Obviously to point that you know, we were very happy other than congratulations and he was really out of his element. So I'll never forget that he right he had no idea how that news was affecting us. Yeah. Yeah. I just that was one of the best moments of my life hearing when dr. Byrd said you do not that's what I remember and I remember breaking down and crying and just and I remember feeling like I'd won the lottery

36:54 And because dr. Bird told us to go into the meeting expecting the worst and hoping for the best, but neither you or I were hoping you had any help with that point. We felt like any hope that we gave ourselves was just going to be a disappointment. We're both convinced that you had the the gene.

37:22 So it was it was pretty wild weed had a 360-degree thinking at that point. We went in thinking the worse and end up being the best.

37:35 So, how did how is this experience affected your life?

37:41 Well, the negative result on the test is it's meant a lot. It's only been a few months, but see no weed now can better plan for the future and we are not playing or not plan exactly. We

37:57 We don't have to worry about this Cloud hanging over our head anymore because of the negative test. I have a 0 chance of having an early onset Alzheimer's so that is obviously a big relief. And so now we can turn my tension to my mom and and helping her, you know get into a home in the next couple years.

38:23 And you know we can do whatever we want with our lives now, right? What would you what advice would you give to other people in your situation or our situation you were thinking about getting tested?

38:39 What I think it probably goes from person to person of course have a few cousins that are in the same situation who are kids of my uncle and they have both chosen not to get tested and they have also had kids of their own so they are going on as if you know, whatever happens happens and and I can't blame them for doing that but it kind of makes you wonder when they have, you know, five kids and two kids a piece if they do have a positive of this meet a genie and what that means for their family, so

39:19 I am I you know from my experience, obviously, it's a positive one having the test results return in our favour. But I do encourage, you know those in the similar situation to get tested that way you can plan and and not, you know, keep past tense really keep passing down this horrible.

39:42 Disease

39:46 Yeah, that's a great question. She is obviously faced with the same situation. I am she's in Colorado. Now that she does have two kids of her own that she had a very young age. But unique's this situation my sister is she she's currently in jail for drug use, so she is expected to get out this fall and I don't even know if she knows that she has the potential to a have this disease be passed down to her MBE that she could get tested. So it'll be an interesting situation to come she's kind of got

40:31 Other more pressing things I'd say to worry about like what the next year holds for so I think in that situation it would just it's a whole different ballgame. And also I think when you have kids it's harder to want to get tested.

40:50 But while I want to

40:53 Thank you for

40:56 Talking with me. I I didn't cry the whole time even though it's an emotional thing for me. So thanks so much. Thank you. And you know, I'm happy to pass a story on so.