Nancy Cypert and Mike Drummond

00:00 Weighted the way you need it will be picking her up clearly.

00:05 Yeah.

00:12 Better Business out of the way, okay.

00:19 Jill lives in Hawaii on the island of kawaii and she has an organic farm.

00:24 Nice trap tropical flowers all kinds of good fruit

00:30 So

00:31 Everything was wasted because she couldn't even give it away Ono.

00:41 And how about me? Am I hot enough?

00:48 I can hear you when I can see the levels are good. Well.

00:52 Oh. Put it on this one.

00:56 We know what we're doing, right? I love this ends up better. Testing. Testing 1 2 3.

01:10 Are we recording? Okay, I am 78 years old.

01:19 Today is August 27th, 2020 and I'm in my home at Palos Verdes Estates, California and I am with Mike Drummond.

01:33 Why my name is Mike Redmond. I am 56 today's date is August 27th, 2020. I'm in Palos Verdes Estates in California with my new acquaintances Nancy cypert.

01:49 Nancy let's talk a little bit about your journey that got you to Trinity Care.

02:00 First have to begin with living in Huntington Beach in the 70s and they're my husband dead and I met a wonderful couple Jean and Steve bissette and Jean and I actually met having to do vacation bible school at the church. We were going to

02:31 And so we did the three-year-olds. She had another friend that I was able to get to know to Diana but jean and I really seem to get along so well in the first time she came to my house with her son Rick, we actually had a daughter and a son the same ages and so they played with each other for years in she came to my house and she was about to knock on the door when she heard all kinds of screaming coming from inside my house and she thought to herself maybe this isn't somebody I want to know if that's what she does to her children.

03:18 And so she knocked and I opened the door and it was my bird my parrot buddy who was screaming and so that began or funny friendship in a lot of ways. We started off laughing almost from the beginning. We've been friends now,

03:42 4

03:44 48 years

03:46 No 50 years.

03:48 Anyway

03:50 Over the years our friendship just grew both of our husbands. My husband worked at TRW her husband worked at McDonald Douglas both of them or Executives that traveled a lot for their jobs.

04:06 And so often the kids would come over and Jean would come over to my house spend the night and Jean would I and I would try another crack project. Then the one we talked about the most was the night. We tried to make a bread dough containers and you've made the dough rolled it out and put him over a pan and then baked it so that they would dry and that shape. We never had it succeed and we ended up laughing so hard that pardon the expression but we wet our pants we have so many experiences like that together and

04:55 In 1977 ad and I moved to Palos Verdes where we are now and

05:07 My kids missed their friends in Huntington Beach so much that that first summer we drove to Honey back to having to be so many times. My friend. Jean does not like to drive the freeway so she would pray.

05:22 Before she left have her instructions right there beside her and very courageously drive to my house to visit and the kids would play.

05:34 Her son, Rick would come and spend the night with my son Chris her daughter. Stephanie would come and spend the night with my daughter Jill.

05:44 And the kids just continued to be friends. They are friends even now living in their fifties. They connect over the phone or occasionally they except for this year have gotten to actually be person-to-person. My daughter always comes home for Christmas and we always go down to Mission Viejo, which is where Jean lives now and get together. Will you go out to lunch the boys, both of them did not get married until they were 5040. They got married when they were four C and

06:29 So they had that in common to my I have no grandchildren, but Gene has been blessed with grandchildren to a boy and a girl from her daughter. Those kids are now out of college and into college and then I have a son now that Chris that lives in Torrance and my daughter lives on Kauai and

06:57 But even though we lived so far apart our friendship just continue to grow and deepen.

07:07 And over the years we have been able to support each other through very rough times and Jean we also have been able to do all kinds of fun stuff together signing up for classes in in the summer and

07:28 We even have travel together. So the relationship is just grown and grown. We lived in Virginia for two years and when we came home and my husband retired, we were so looking forward because Steve had also retired to the four of us getting together more consistently.

07:51 And unfortunately things came to interrupt that my sweet friend Jean got an autoimmune disease myasthenia gravis and it was very dipilla debilitating. And so I was there to support her. I went through a real rough time emotionally and she was here she would drive up to visit me bravely again on the freeway and she would be there to emotionally support me through some rough times of therapy and things like that.

08:40 And I was able to support her through her illness.

08:45 Remarkably her Myasthenia went into remission, which doctor said was impossible, but unfortunately in its place came.

08:56 An even worse autoimmune disease it's a cell disease that destroys the cells throughout her body and it will be the thing that eventually takes her to heaven.

09:13 I never think I really want to talk about is our spiritual relationship. We both were able to be involved in a Bible study Bible Study Fellowship and able to share that or phone even though we weren't close to each other and lessons and she taught a class. I taught a class. So spiritually we have grown by Leaps and Bounds in our faith in God and in Jesus Christ is the most important thing in both of our lives and it is that faith that is bringing her through her terrible out of autoimmune disease and it is what brought me through. My husband's bewildering illness.

10:05 And but also the support of friends and family and

10:11 My friend Jean was there for me all the time. My husband dead.

10:17 Died very quickly 5 weeks. He was gone. He went down every day. It was a rare brain disease. They say it's one in a million. It's called Crutchfield Yakov disease and

10:33 Through that I became involved with a group called Trinity Care Hospice and I began to meet doctors there and other people that worked in their committees and on their board.

10:50 An amazingly enough was put in contact with a person who knew a doctor Glen Komatsu and dr. Glen Komatsu went down to visit my friend Jean. The one thing that was not controllable for her is that this autoimmune disease she has his very painful and her quality of life was suffering. She would have a good day and a bad day because the doctors that she had in Mission Viejo were afraid to give her any more pain medicine that she was already on.

11:33 And Doctor Komatsu went and visited her.

11:37 And said that he would be her pain doctor and so he has been able to put her on a pain medicine that has lifted the quality of life and made her pain controllable.

11:53 Or tolerable this the same Glen Komatsu who is the chief medical officer for Trinity? So it's pretty amazing that Gene actually is the first

12:07 Quiet, so to speak of Trinity Care hospice and palliative care in Orange County.

12:16 And so

12:22 What that is done for her quality of life has been such a godsend for both of us. We knew it was because God loved her so much that it opened the door for Learning and knowing these people that could help her.

12:40 And I

12:44 I just love her to pieces and she loves me too. So we have really been able to support each other in ways that and understand each other because of our long history together and knowing the ups and downs, how are personalities work how our emotions work what we can physically do what our kids are doing how we have this real just fantastic relationship with God all these things have gone into creating a relationship. Like I have never had with anybody else and

13:30 The difficulties of this covid-19 in 2020

13:36 Is breaking both of our hearts?

13:39 I have developed a different situation unlike me. I've never had much physical problems and I have developed.

13:52 Pain in my back and I am needing back surgery and she wants to be the one because my daughter can't come from Kawaii. My sister can't come from Oregon to support me and care for me. When I come home from the hospital. Jean wants to be the one who comes to help. She walks with a walker that she does get physical therapy.

14:22 And she does have a nurse that does come once a week through the palliative care to check and see how she's doing.

14:34 She does have periodic checks with Doctor Komatsu.

14:38 And he has been willing to come and have family visits with her friends and family and explain to them very specifically what her autoimmune disease is doing to her because many of them have seen her recover and pull herself up so many times that they don't realize how limited she is with the pain that she is living with one. So if this whole time has been very difficult because I can't drive that far to be with her and she doesn't drive anymore and she is so

15:25 Have to be so careful because she is one of those people who would be so vulnerable to catching a covid disease and that virus and and so

15:43 We would have driven to each other three months ago, but now it seems more impossible since I can't drive my I can't drive that far. My right leg is so compromised it driving is an issue. When was the last time you saw a g? I haven't seen her since March.

16:06 And it makes me cry.

16:08 I was going to ask you how that makes you feel have you been able to do like Zoom calls or stuff like that with that we talked on the phone a lot.

16:21 She's been able to connect with her grandchildren over Zoom.

16:26 Also, I do need to share the blessing that her son Rick his wife was basically told that she could not have children and

16:38 For almost four years ago.

16:41 She got pregnant surprise surprise with identical twin girls and they're all this going to be for and what a joy that is been for Gene and for me to be able to go and visit them and

16:59 That I can't do either and that breaks. My heart also not be able to see their mom and dad but not seeing Gene. Is it so difficult for me because over a phone. It's just not good and even over resume.

17:22 The quality still would not be good and she cries too that we can't be together. And so it is just this is one of the biggest things that the pandemic is done to me is Rob me of my relationship with her. Well and my kids I have seen my son and daughter-in-law but not my daughter haven't seen my daughter since Christmas.

17:51 So I would have been over in Kawaii at least twice by now. Haven't seen my sister who moved to Oregon 5 years ago and I would have been up there at three times with my two little pups by now because they fly with me and she has an acre up there and they love to run.

18:11 That's one of the Diabolical things about this disease. Is that a severed human connection? Right? Can you talk a little bit about the day that you found out or Jean told you that she had this?

18:27 This disease. What was that? What was that day? Like in repeat that we actually been out to lunch and we were walking back to the car.

18:40 And she had been through some testing because even though supposedly this other disease has gone into remission. She's still

18:50 All of a sudden it was not feeling very well. She was still able to walk and everything and

18:59 She told me that she had just been told about something new that she had she couldn't even remember the name. I can't remember the name is we have to keep it writing it down to be able to say it but

19:20 We didn't cry together. We just looked at each other in total disbelief that this would happen to her again.

19:32 It was just so unfair so wrong and she lived with it for quite a few years before we ever got connected. She ever got connected to doctor Komatsu and

19:50 It's just been awful. How did you get connected with Doctor Komatsu relationship with some of the people and being able to begin through a another friend that I've met through Providence become such a sweet friend Robin Haney. I have been informed of ways that I could even support Providence more and that doctor Komatsu was getting

20:23 Chair

20:27 That was a huge honor at Providence and that I would be able to support that and I really felt what he was doing was so important. It's always able to combine some donations that I was making that we're smaller to into a bigger donation through Robins help to make it really be

20:58 An excellent donation to his chair and so that really made me feel good and but through all of this. I began to be invited because of my donation level to some different things and had a dinner. I was introduced to a man who told about Gene and he connected me with Doctor Komatsu.

21:30 You're wonderful, you know you talked to him.

21:35 A little bit about until this and how quickly it came about. Can you talk a little bit more compact out a little bit about when you first when the when the first diagnosis came with that looks like and my husband had just retired. He was a brilliant man. So physically fit he worked out every day. He had his special protein drinks that he made he lifted weights he ran and when he retired

22:12 He discovered that he is he had lost the ability to lift weights because he had lost all of the cartilage in one shoulder and so his relationship with one of his friends meeting at the gym changed a bit, but then he started doing cardio and stuff cuz he still wanted to be with his friends anyways, so he would do a lot of things in his office.

22:42 So

22:44 One day it was near Mother's Day.

22:48 In 2003

22:52 We were supposed to go down to his parents for a Mother's Day weekend, and he told me that he had been experiencing ringing in his ears and how it was starting to drive him nuts. And so I told him to go to a ears nose and throat fellow and he did he put him on the steroid pack and the first day he took those seven pills and by the next morning when we were to drive to San Diego. He said he was so happy because the ringing was gone. And so we drove down to San Diego and he missed the term to his folks place. I said something and he said, oh I just was paying attention to the radio was doing and so

23:48 I turned around and went back and then during the weekend both his mother and I noticed that he kept checking the label on these steroid pills to find out exactly when he had to take the next pill because it started at 7 and went down to just one after 5 days. And so we thought that was odd because of his he had a just a fantastic memory. And in fact, he would purposefully leave jackets at school when he was a kid.

24:30 So come home and say they were lost so that he could be like his friends who always lost things and but his photo

24:42 Memory just wouldn't let him do things like that. Anyway, so we noticed that then coming home on the Sunday afternoon after Mother's Day. He missed a turn coming home and that was so odd. Anyway, I was able to get him back on the freeway and we came home but

25:09 Starting on that weekend every day. There was something that

25:14 He lost the ability to do memory-wise he began to not know which towel to use which toothbrush to use. We did go to his primary doctor and he

25:30 He did blood tests check them out said he couldn't find anything wrong. And we waited for the blood test by the next weekend. My son came over and we were going to celebrate Mother's Day for me.

25:44 And we went out to that morning. My husband wouldn't go came to the door of the bathroom. We've been getting dressed for church and he was in tears because he could not remember how to tie a tie and he had worn a tide at work every day of his career.

26:09 And he decided he wasn't secure enough to drive to church that morning. He didn't want to spend time on the patio talking to anybody because he felt like there was something wrong in his speaking and so we did that and then Chris came over.

26:29 And we had a visit but before Chris came and drilled me on how do I sound do I sound different all this and I thought he sounded fine.

26:41 We went to a brand-new restaurant. It was a buffet and so the first round we all got our plates and then the next round I went and got some protein and things like that and Ed got up to go do things on his plate and he came back and said I can't find any protein. Where did you find that can you show me?

27:05 And I trusted play it down. But my son Chris by the time we came home after that lunch. Chris called and said what the hell is going on with Dad. I said, I don't know and so we had a CAT scan the next week the blood work came back totally normal.

27:29 The next week I did.

27:33 We did think maybe it was depression. So he went to a psychiatrist and and so they put him on a antidepressant the next week.

27:43 He did.

27:49 He did not know how to almost feed himself.

27:53 So this is week 3 and we have no idea what's going on. The CAT scan showed nothing. I talk to a doctor in the hospital. Could the steroids have kick something off. I was so afraid that he had a virus that by the time they figured out what it was. I'd never get all of them back because his memory was going so rapidly I was so thankful. I slept at night because by the time we got up in the morning, I had to be a step ahead of him. He would walk around the house with his glasses, which he continually lost he would walk with a case and the notepad where I would write.

28:31 To eat lunch at 12 to walk the dog at such-and-such a time that kind of thing and

28:37 That was the he finally asked me if I would just stay home with him everyday because

28:45 He felt kind of lost in the house and it began by the fourth week. He didn't know where he was in the house. I had to walk backwards and lead him.

28:58 By the late fourth week. We did have an MRI and he had an EKG and it was then in the hospital that the neurologist that are other our primary doctor had had sentence to suspected that it was this rare brain disease and he pulled by Sun and I out of the room to talk to us about this and Chris told me he said Mom that Chris was on the internet all the time looking for what could this possibly be? And anyway, we were told what it was suspected to be and I could see the MRI of his brain. There were there were black spots around his brain. And then on the MRI it was the needle was just going back and forth like it was crazy. And so

29:57 But he came home the neurologist ordered a physical therapist and occupational therapist come to the house. We were told where to put bars one doctor told me that he had six years. Another doctor told me a year.

30:18 And

30:21 So Chris on the Internet connected us with the cjd foundation and it was called Crystal Yakov disease.

30:30 And anyway, we we went to these people came, but before that we were in the bathroom one day together after he has come home from the hospital.

30:45 Because his friends wanted to come and visit him. They were so distressed that something could be wrong with him anyway.

30:55 He was looking in the mirror. He always wanted to brush his teeth after lunch. So we were looking he was looking in the mirror.

31:03 And he said to me what if I got?

31:06 And I said

31:09 They say your brain disease and he said is catching and I said no, it's just in yours.

31:18 I said I wondered why I was having so much trouble with my left arm. He had never said he noticed anything wrong with him.

31:26 And then he said to me how long have I got and nobody had ever said anything about death?

31:33 And I told him a long long time and by this time I'm laying on his back cuz he's

31:40 Standing there leaning and crying and he didn't like to fight cried. I cried a lot cuz that we didn't know what was going on and

31:52 So I said a long long time.

31:56 And so we went into the bedroom and cuz he always was now taking a nap after in the afternoon.

32:03 And he wanted to get down on his knees and pray and so we prayed and then he laid down.

32:10 And he told me I just want you to know I'm not afraid to die.

32:18 Because I know we'll all be together one day in heaven.

32:22 And done

32:25 He would then he told me there was hanging on the wall at the Stitchery his mother had done and they told me about the first time he insect accepted Christ in Camp when he was a kid.

32:42 And so he went to sleep and he did not remember any of that when his parents would call to ask how he was his dad and he would talk sports because he was watching sports and I finally called horseback one time and that fourth week and said, I don't know how he does it how he brings himself up into the current moment, but this is not the way things are here and finally

33:12 At the weekend of that end of that fourth week his I have a friend who drove down to San Diego and got his folks because they weren't driving by then and they drove him up them up and they came in the door when they came in. He said I am all better.

33:35 He said he had a

33:41 SARS and the West Nile Virus because that it all be on TV them.

33:47 They spend a weekend.

33:51 I have never paid any bills during all that time. So I asked him to please sit with him on Sunday. Well, I went downstairs and paid all these bills and basically they relive his whole childhood, which was great for his mom and dad because

34:09 It made them feel so good and his long-term memory was fine. So

34:21 That Sunday night

34:23 He

34:26 Was belligerent and one of the things we had done when he first retired was put wood floors in the upstairs of our house. And so his dad he was holding on a door frame the stereo was on and he was talking about dancing who wants to dance so his dad and I basically said we're dancing you into the bedroom.

34:54 He was so strong still in his right hand. We had to pry it off. We could not move him the Xbox and so we skated him down the wood floor into the bedroom and got him in bed, and he went to sleep and the next morning. He was in a coma. He could not speak. He was he was gone.

35:14 So this disease is supposed to be one in a million. My story is good compared to a lot of people because he was walking talking eating up until the night. He went into a coma he had no invasive testing and he

35:38 They are the stories. They tell are so heartbreaking and some forms of cjd. There's three kinds. There's a familial kind there's the sporadic kind which is what he had which is the most mysterious. They don't know what causes it and they don't know what kicks it off and there's the

36:01 Variant kind which tour through England from eating bad meat with the with the mad cow disease now right now, we're not having any of the variant deaths because of the good quality meat that everybody's getting and the testing they're doing but the variant in the familial the Familia people just

36:29 You do testing on through the genes and so it was a relief to know that my kids would not get it. If if you have the genes in one type of the familial you have a 50-50 chance of getting it.

36:45 In other kinds you have a hundred percent chance of getting it so very thankful. I've been very involved with the cjd foundation. They have the conference every year, of course this year was canceled, but I go to support them and to be there for other families to support them and we are getting lots of new families because of the media coverage.

37:14 The cjd foundation did through Case Western. They donated all of his brain. That's how we were able to tell specifically what kind it was too and it's on bank at Case Western.

37:31 And a lot of people are doing that for further research and the research is getting better and better and better and now there are early tests. So people who are sick with it know what they have and know what they're dealing with.

37:52 Well, we're about at time.

37:58 What a remarkable poignant Journeys with you and Jean and genes. Last name is

38:05 And then your dad which is

38:12 So sad but

38:16 From what you're telling us it's not as it could have been worse.

38:25 I want to thank you for sharing your stories with us.

38:28 Thank you for being so candid and so vulnerable and so open it takes a certain amount of strength to do that.

38:41 That's a bit contagious your energies a bit contagious. So thank you for that. Is there anything else that you wanted to just sign off with? Are you good if you're good with this experience? Thank you so much. Thank you.