The Forgetting: A Portrait of Alzheimer's

Just waiting for there's two more people two or three more people just so they we can you know what what I'm going to do first of all is is uh I'll start I've got some housekeeping items that I just want to mention before we get into uh the n in family and we're so lucky to have them here uh with us this evening considering um the marathon that they have been on for the past well for years but specifically for the past 30 days 35 Days um and I'll let you they'll tell you their Odyssey

on that one but um at any rate thanks for coming tonight and first of all I'd like to say that we've changed our name a lot of people uh used to know us is the Boston Alzheimer Center and we have gone back to the original name of the house which is Rogerson house and we are still taking care of folks with um memory problems so just want to let you know that and um that's number one number two is we have Um tonight's program is going to be webcast on channel two so that what we're

filming here this evening will be shown as soon as Paula gets the uh video back to me we'll get it to Channel 2 and when you go on to the computer site if you've got the right acrs for your computer you can hook into um the the site and you can watch the lecture that we're going to be fortunate enough to hear this evening the other thing is um wanted to let you know for for folks who Are keeping notes that the next lecture this is the first of this year we're into our fourth year

and the next lecture is going to be on Thursday February 26th which will feature Kirk dner from the briam and he's going to be doing what we normally do is have a doc in to give an annual update on what's the latest in research and treatments of Alzheimer's disease and then in March on March uh Wednesday Wednesday now as opposed to a Thursday evening March 31st I feel uh very fortunate enough because this is a problem that's been bugging me for a couple of years and we just start in the paper the other day which

is uh Alzheimer's and down syndrome patients and uh Dr Florence leay Li Lai who on staff both at Mass General and also at mlan is going to be coming and sharing that with us and then we have Dr Barry reeberg who will be coming in May who is one of the top docs who's been working with minee and he will share his Thoughts with us on that and then um the final one that I have scheduled one I don't have scheduled yet but another really good one is in here this topic which I'm sure you

folks can and many in the room can appreciate compassion fatigue which is Donna White who is an addiction specialist from Lem shat hospital and talks about all of the things that caregivers go through and when you're loving somebody that much and then getting that tired so that's That and then one final thing that I want to mention is that uh this year we have we had a conference symposium that we had sponsored in October and um from that um there was a gentleman by the name of Dr um and I knew I was going to

forget his name Martin prince who is a doctor from London who is the head of Alzheimer's disease International's 1066 program which is dealing with Alzheimer's in developing countries and we are now collaborating with them in Sending them with all the tapes that we do from the lecture series and although also the symposiums we've uh presented we are sending them over 60 videotapes that will be used in places like India China um Africa in Latin America so at any rate I think that's the update on what's going on here and I would now like to and

there's not much I'm going to say here because what can I say a lot of us practically everybody in the room saw the show last week get him And um thank you from all of us thank you that was not an easy thing to do to get up there um and pour your heart out and so from everybody please um thanks for doing that the folks who are here tonight are John Nunan Patty nun Barbo Julie n Lawson Eric Nan and Malcolm Nan so Patty thank you for [Applause] coming thank you it's a privilege it's

a hard privilege but it's a privilege be Agonize over how to say and what to say uh I'm Patty 59 years old I'm the third oldest in the family historian for Simplicity we will often call Alzheimer's disease ad because of this illness has evok so much pain in my life I need to read this my mom was a vibrant funloving Woman Who Loved people and life she laughed often and enjoyed having a big family there were 10 of us we would pack the car for day at the beach and sing All the way there was

always room for one more at the dinner table mom forgot when I was a teenager and then she forgot more and more we used to laugh when she called us by the wrong name or forgot that she had just disciplined one Us in February 1964 our youngest brother Eric was born we were thrilled with a new little guy to love we easily slid into the routine of a new baby all of us older children helped a lot around the house and it wasn't hard for us all to Take turns with a late night bottle or

an early morning feeding I was 20 years old mom didn't seem to recover as quickly after giving birth it must have been that she was 40 years old she loved babies but she was depressed we couldn't understand it the doctor called her postpartum depression and put her on an anti-depressant that year Eric was newborn Bob was two Julie was six John was 10 Butch 13 Fran 15 Kathy 17 my Older sister Moren was 21 so there was quite a houseful of people children gradually mom became more depressed had difficulty making dad's lunch putting the coffee

pot together even though she'd done it thousands of times and organizing meals my dad was overwhelmed he took her to doctor at the doctor not one could find the cause in the spring of 1967 mom had a series of shock treatments and then in the summer another series of shock Treatments she went to my sister Morin's house to recuperate after the treatments I had Eric living with me on and off during the summer by Fall my sister Julie age nine came to live with me and that was supposed to be temporary Julie would not have

to change schools if she came to live with me we then had five people in our little four room apartment Julie aged nine a 2-year-old daughter and a newborn baby and I was 23 years old in December 1967 dad was desperate And Mom was admitted to St Elizabeth's hospital for tests it was the week before Christmas and dad and I heard the heartbreaking news that mom had a very rare disease called Alzheimer's and Mom would gradually lose her mind and would die within 5 to eight years shortly after that we started to explain to doctors

and nurses what Alzheimer's disease was at different times Fran and Cathy quit their jobs and took turns staying home with their Younger children eventually dad hired people to help as Mom couldn't be left alone my dad then spent his days juggling work House mom sitters kids kids and eventually hospitals and nursing homes he was a firefighter with a large family in little money needless to say there was chaos when she was an institution dad would cook supper supervise the cleanup go visit her and then she would cry and beg to be taken home she was

lonely confused extremely Depressed and easily agitated she was upset when he visited and upset when he didn't visit when he got home he would go into his bedroom after a while he'd come out and his face all red from crying feelings and pains were never discussed we were all in the survival mode while writing this again I am moved with compassion towards my dad and what he had to go through in the early 1970s mom was bedridden and non-responsive she was at boxboro state Hospital at that time I received a call from a nurse that

mom was doing poorly when I met with the doctor he told me that he was putting her on IV as she was dehydrated I then told the doctor that we didn't want any extraordinary means taken to keep her alive he yelled at me I can't kill her you know with tears and faltering words I explained that I was not asking for him to do that at all and that was my introduction to end of Life Choices the 5 to eight years predicted Turned into 11 years with the Last 5 Years mom being in a fetal

position in a bed being spoonfed most of my siblings were brought out up without their mom and and dad was preoccupied with her illness and trying to delve a pain one of the hardest parts of the disease is the personality changes that happened forgetting starts first then depression then an inability cope with life and Relationships I remember how hurt my mom would get that a friend would say do something she could no longer feel the love from the friend and ignore the little hurts they were big hurts and she began to withdraw and criticize and

became very paranoid in the 1990s I then experienced the same things with Fran Fran lived with me before she was married and I was the matron of honor at her wedding she began to write me some very strange things and accuse me of Wrongs and I was devastated I would send notes of apology and I lovingly sent notes of encour to be kind and reach out to her I am very grateful to say that in therapy she continued to sort and she did remember how supportive I was to her especially during mom's illness after the

Alzheimer's disease was apparent I began to put this ad puzzle together John will be speaking about France ilus Mari and Dick lived in New York while they were visiting one time I said Something that offended Meen and she started sending me these awful letters andus me of things that happened when we were teenagers Maran and I had been roommates and best friends when we were growing up we always devil dated after our marriages our families were inseparable in 1989 she refused to come to our 25th wedding anniversary in 1992 Marin's husband dick finally came to

us and he said I don't know what's wrong With Marmi and how sad I am at her choices by the mid90s Morin's teenagers were very upset by their mom's lack of memory and her behavior dick finally took her for testing for ad and she was diagnosed with Alzheimer's that explained the destruction that was happening with our relationship dick did everything he could to keep life normal for them the teens left home and dick made sure she had important things to do during the Day and people to interact with when he wasn't working they were inseparable

Marin was an EMT but her condition gradually made it impossible to continue in December of 1999 dick went back to driving the ambulance so mein could at least ride in the ambulance to continue being part of the squad his stress level was extreme with round thee clock hair one night he came home after an ambulance run and he died of a heart Attack during the funeral time Marin's children wanted someone by side constantly I volunteered the disease had progressed so much that she forgot that she'd been upset with me and she was relieved for the

help and the Comfort I gave her the children hadn't had a chance to grieve their dad's death and were in a crisis about what to do with mom the two girls moved to Oregon to be with their brothers and bring mein to live there those precious nieces and Nephews did all in their power to follow their parents' plans for their mom's final days they agonized about her Care at numerous family meetings through each stage of the disease they kept her nearby First in a separate apartment and then taking turns spending nights with her she went

to a daycare during the day Marin finally was placed in a facility then she decided not to get out of bed and often wouldn't eat the nursing home started to force feed her Her directive said no spoon feeding they found a facility that would not force feed Moren and they moved her there the room was filled with pictures and momentos of her life and her favorite music she had overnight visits from her children and grandchildren my nieces and nephews asked me to come as Meen asked for me and they knew thaten had been heard by

me I was at peace with Meen but they didn't feel she was when I walked into the room Marin said my name With a big smile and she cried died after I left that evening the next day my niece Karen asked me to talk to Mom about the hers I prayed about how to do this she didn't have that many words when I entered the room she was so excited to see me again and she cried I again apologized for the hurts that I had CA her and that I also told her that I forgave

her for the hurts she CA me later that day her condition changed and She was no longer responsive the children felt that she was waiting for me I spent five days loving Moren and her wonderful children she died a few days after I left in November of 2001 A week later as we gathered from Morin's funeral we were in anguish we grieved moren's death and we grieved her long illness and all the heart through the illness and then we grieved the disease and the loss of our Mom we also grieved our future knowing that we

would have many repeats of this Devastation I am so grateful to God that I apologize for the hurts I caused my sisters but that I didn't get resentful and remove myself from a relationship with them or retaliate this disease is More Than A Memory robber I'm sure so many of you know that it's a destroyer of relationships Alzheimer's has broken our hearts many Times Alzheimer's disease has been impacting Our Lives since the early 1960s and it's 2004 and very young age our children were taught how to take care of themselves and to be independent to

make their lunches and do laundry and other chores along with speaking like this I will do anything to raise awareness of this Dreadful disease I shared my introduction to and life choices with my mother but as a family We've had many discussions about what kinds of intervention we would want during a terminal illness what are the things we need at our bedside if we're on our last days do we want music what are the things that would would sooe us we have partnered with Sally Callahan and others in participating in dayong conferences regarding end of

life choices respecting choices is values clarification ethics and decisionmaking for endstage Alzheimer's patients it's a Conference for family members and professionals that offer cus during the day participants are invited to examine their own attitudes about their lives ends and how to deal compassionately with patients and their families in the mid90s all of us siblings gave our blood for testing our genetic results are known at the the National Institute of Health our extended family is involved in a blind study there every year we go for Cognitive testing blood tests MRIs of our brains and Lumbar punches

this is a nerve-wracking emotional time with ad being right up in our faces every second year round I work on the memory ride at times to exhaustion to raise funds for research Eric will be speaking about the memory ride all of the world doctors are working on different areas of research ad is considered to be an old person's disease and they must die of something but it doesn't have to be like this we Need to fund research and allow people the Dignity of having their minds when their bodies wear up when we were growing up

we often went to Dad and showed them a sore foot or sore finger he would examine the sore foot and tell us walk on it and it would get better that's a parents thing but that was dad's silent mode of life and I think it was the times to just walk on it don't feel don't complain ignore the Pain and that helped him survive when I first heard that Fran had ad I was devastated this was the worst nightmare of my life and it was happening again Dad told me that I had to get over

this I told him I will never get over this I said Dad this is breaking my heart I know a God that loves me I have a wonderful husband and beautiful children but I will never get over this God has taught me many things Through life's Journeys I have gradually changed how I deal with pain but I refuse to be stuck in the pain I grieve continually just thinking about ad the adri Destroyer fills my heart and my eyes with tears that are always leaking out but I am integrating the joys and the Sorrows I

am in tears and heartbreak and then I am experiencing the exhilaration of the blessings of my life I laugh more I express thanks and experience peace I take more time to Smell the roses walk the beach and enjoy creation I've always been one to want to make memories and I want to make more with my husband children and eight grandchildren I compliment when I see the beauty in others and I support people by sending notes of encouragement I make an effort to relate to my nieces and nephews as often as possible and I so treasure

these my very precious siblings we are very different but I have a such a respect and admiration for Each I think it's a miracle that we have survived all the garbage and heartbreak and destruction of Alzheimer's disease and we still have good relationships with each other we have fun together we work at it continually in October 2001 my sister Kathy called from North Carolina and said paty I have metastasized cancer in my spine but at least it's not Alzheimer's disease we Cried together and prayed on the phone getting ad not cancer was surely her worst

and our worst nightmare Kathy died seven weeks later the same day that Marin died in Oregon a couple years ago I went through a lot of family stress and I forgot some major things I began to fear that I was experiencing the symptoms of ad I was terrified I was traveling down a thought process that was consuming me and I decided to more fully pursue my Relationship ship with God the god that loves me and created me with the help of a friend I began to search the scriptures more she helps me to see that

I was like job when he said what I feared has come upon me what I dreaded has happened to me the Psalms are a beautiful invitation to integration and I so am comforted by the variety of feelings expressed from the depths of Despair to the heights of worship and Thanksgiving the writers Express their Feelings to God God and man and I surely can identify with these writers at times I'm experiencing Psalm 130 out of the depths I cry to you oh Lord and I pour out my heart to my God and I feel no comfort

and at other times I am experiencing the feelings expressed in Psalm 34 I saw the Lord and he answered me he delivered me from all my fears the Lord is close to the Brokenhearted and saves those who are crushed in spirit and see that the Lord is good blessed is The man who takes refuge in him in order to keep from getting depressed I am memorizing some of the sounds it has helped tremendously I am continually experiencing more peace and more of God's love for me last June after doing our cognitive testing at NIH Peter

and I did the genetic counseling and after a very exhausting and emotional 24 hours as we contemplated this I did to find out if I had the gene tears of relief flowed as The doctor told me I do not have the gene that M that means that my children can't have that je either and I thank God for this thank you and next is B hello my name is Malcolm Butch Nunan I'm the sixth child born of Julia Julia Nunan I was in junior high school I was a junior in high school when my mother

started to get sick we did not know what was wrong with her she Started seeing doctors in Boston the house was always in chaos it was hard to watch my father trying to take care of Mom he was working full-time as a fireman and also two part-time jobs in stoen where we lived I was at sophomore in high school when my mother was diagnosed with Alzheimer's disease I I felt like an in invisible member of the family even though my sisters and brothers were there I did not feel a part of the Family my mother's

illness created a situation where I could disappear from everybody and I became a loner at school today I realized how hard it was for my father to support 10 kids and keep his sanity when my mother became sick I spent a lot of time with my sister Marine working at the family-owned Pizza Store during my high school years the family changed drastically my mother was in Boston Weekly and we were on our own I stayed at my Aunt Pat's house she was my mother's older sister and lived right down the street she had eight children

of her own it was hard staying there with all her kids I felt like I didn't belong anywhere there was very little information about ad at the time mom was diagnosed my sister Kathy came up with information about early onset she told me that each child of our Mother had a 50% chance of dying from the same disease this information only increased my feelings of being alone relatives and friends were unable to offer support on this unknown monster my mother was in and out of hospitals and eventually never returned to our home as time progressed

I put the illness out of my mind and went about my adult life the family was no longer close and we went separate ways after alheim ented my family again I started to look for Research studies the family could become involved with I felt hopeless and this was a way of helping that feeling around 1990 while working at mle hospital in Delmont I started doing all kinds of research at mle's library and attempted to talk with research doctors there to see about volunteering for for projects the doctors did not have any need for us at

that time even though we had two sisters with early onset Alzheimer's disease I then began calling all over The United States to doctors I found that were publishing information on the disas disas I was having little success in becoming involved with research eventually I made contact with research doctors at Massachusetts General Hospital and now we all work with several doctors on the East Coast as time went on I worried about my memory and how I was thinking I started having organizational problems and would Forget about returning or following up on contacts I had made regarding

research I asked my sister Julie to take this responsibility on through the years we became involved with the National Institute of Health in Bethesda Maryland we have in have since been informed which Gene caused Alzheimer's disease in our family and I have come to learn that I carry the gene which causes Alzheimer's in our family I now have an official diagnosis of Alzheimer's disease and as of December 31st 2003 I'm no longer able to work as a licensed mental health counselor the genetics of early ad continue to haunt our family we are now coming to

the time when our children are entering the prime of their lives and they face the uncertainty of their future the emotions of our children being heard are the most difficult part that I deal with today I I get nervous when I talk so I Wrote mine also the effects of living with Alzheimer's disease where do I thought when most of your life has been with Alzheimer's disease my name is John Nan I am the seventh child of Julia and John it was around 1967 when my dad found out my mom would not get better would

get worse and eventually would die from this disease this was the first time I saw my Dad cry I was 12 years old and seeing my father's cry scared me my mother had the disease for many years when I was about 15 I went to see her in a nursing home she asked me who I was as I stood at her bed I never visited her again I regret that decision now but at the time I was devastated for many years I did not have to deal with Alzheimer's disease then came Fran maren and Malcolm

which let me share with you about living With ad from this point of view I could stand here and talk to you about end of life issues or death and dying because all of these issues are so intertwined with each other but I'll try to focus on my sister Fran Fran my sister Fran let me give you a brief description of her and who she was Fran was always always spirited and fun loving she loved to kid around she loved to laugh she was always looking for other ways for other people around Her to be

happy and light Fran could get my dad to relax even if he was upset dad was very serious most of the time so to get him loosen up was going so when my mother got sick at the age of 17 Fran became caretaker and Homemaker for the younger kids in the house and much the same way as Fran being the lighthearted Joker when she was called upon to take on the role of mother caretaker and Homemaker she took this Role very serious so serious she nearly had a breakdown FR went away to rest with relatives

that she enjoyed they happened to live in Hawaii and when she came back she began to settle down she went to England to cap and May B College eventually she married Steve they had met at College they had two CH children and settled down just outside Hershey Pennsylvania in Lancaster Steve worked in private Practice as a psychiatrist and also for a hospital for mentally challenged individuals Fran was a stay-at-home mom she was extremely gifted and in addition to all of the usual mother Homemaker jobs she did all the plumbing iCal and tent we needed around

the house she installed a bathroom she rewired her home and installed the Skylight in her living room and she built a coffee table with a checker Board built into it I give you this information because it was so important to keep this in my mind when I saw her so I would feel at he at ease with who she had become I love being part of my family I I have learned and grown in many ways and continue to do so especially when I take on the challenge of sitting down and reflecting and sharing with

all of you how my life has been affected by this Disease friend started a while back to be aggressive with PE and hit people in frustration FR had been in many nursing homes and Care Facilities due to this aggressive behavior and many of the facilities lack the understanding of how to deal with the aggression it is my own belief that medications can be adjusted to a point and at the same time professional caregivers need to realize not just the patients needs but also the caregivers Needs in order to care for the patient it is a

difficult balance that I believe takes a very special and sensitive person Fran has now passed away she died December 22nd 2003 it has been a difficult Journey watching her go from a person who could do all to using dry erase boards to help her to remember to not being able to drive to not doing much of anything with the exception of sitting down to Visit she would repeat herself over and over one thing I forgot to say about Fran is that she had a gift of a soft heart I could walk into her kitchen and

she would not even have to to turn around to look at my way and she would have a sense of who just walked in and where I was at emotionally what a gift I tell you this because even into her late middle stage this gift had been with her she knew when someone with a heavy heart was Near her although she could not understand what was going on I could see it in her face when I went to visit Fran with her husband Steve he was having a hard time with the home Fran was in

they wanted her moved and it was heavy on his heart I could see the concern in Fran's face she would rub his hand with a and babble with a frown on her face it took a lot of effort on Steve's part to convince Fran that everything was fine even as these types of interactions Were going on Fran could not understand I do anything for herself Fran had some fruit cut up on the table in front of her and she was just playing with it and moving it around it was not until Steve showed her by

example that she started to eat it it was not until this time that I realized that Fran was close very close to end stage she had began to sit more did not Wander as much and was tired a lot FR got very angry mad and frustrated when she went to the bathroom in the diapers and yet she did this constantly in her last six months she shuffled around going nowhere and yet going somewhere at least she knew or sensed she should be doing something so she got up and moved and as we walked around friend

would kind of Shuffle and all of a sudden she would just Stop point at something and babble for a minute she would turn and look at me what I realized is if I had a frown on my face trying to understand what she was saying she'd be frustrated if I had a smile and made a positive comment and chuckled Fran would also chuckle Babble a little more and move on till she saw something else I just wanted to sit or lie down and rest towards the end Fran could not do for Herself this is very

hard to watch she did not want to live like this she had shared with many times no spoon feeding no an antibiotics no intervention at all and yet even though her husband Steve knew this he could not let her go and so I watched and I cried and I struggled because I knew what Fran wanted I bit my tongue and said nothing I waited and waited and waited for Steve to be able to let her go in the second Week of December 2003 Julie Patty Eric and myself went down to Pennsylvania to see Fran we

had received a call saying she was not doing well I made a decision to go down right away we were told Fran was sleeping with her eyes open unresponsive and not eating and continuing to lose weight upon seeing us she greeted us with a smile her heart told her it was good we were there and she responded to us she ate some food that Julie fed her This in itself was a decision to feed her because she did not want to be fed she smiled she even seemed to hum along with the songs that we

sang as we visited and as we said goodbye we told Fran we loved her and it was okay to go home and be with the Lord we left the nursing home and met Steve for dinner over dinner we talked about allowing Fran to Die For the First Time Steve acknowledged that he would allow Fran to go and would talk to the Nursing home about feeding her and the medication she was on it makes me wonder if Fran waited to die until she sent Steve was ready to let go Fran died the next week it is

painful for all of us to watch so we share our story and our limited knowledge in hopes it may give you some insight and you all know that you are not crazy that others are going through the same thing in order to do something positive And not feel like victims in 1997 my brother Eric and I started a bicycle ride to raise money for a research Eric will talk more about that I'd like to share excuse I would like to share with you a very small piece of finding out about having or not having the

gene for early on at Alzheimers I had wanted to know for many years seven years ago I met my present wife Donna I did not want to get married If I had the gene it did not matter to her it did matter to me but they had not not yet determined which genan we carried due to a mixup at a lab so we did get married and two and a half years ago my sister's blood was retested for the gene they found the gene I would was overjoyed at this discovery I wanted to know Immediately

I was in in the process of setting things up to find out when Marin and Kathy died with this kind of stress on my life already decision was made by the doctors not to tell me that at that point my life in my life I was under a tremendous amount of stress I was forgetting a lot of things which caused me to think I may have Alzheimer's which caused more stress which caused me to forget more which Convinced me I had all and so on and so on and so on even to the point other

was around me thinking I had Alzheimer so in the middle of February I received to call I was told I could find out if I had the Jee so in March I went down to NIH with my wife we arrived Friday night did not sleep much Saturday we did genetic counseling for about five or six hours we left there went back to the hotel we did not much sleep much again and on Sunday morning we met with the doc with Dr Trey suland as we sat across from Dr sun and asked he asked me in

four different ways if I was sure I wanted to know and my response was yes each time Dr sunin proceeded to tell me that I do not have the gene I sat there stunned and did not say anything this is when Dr Su and told me this means your kids would not get on at All SS and I wept I wish I could say that this was the end of the story and they lived happily ever after but this is not the case the disease is still taking its toll in my brother Malcolm and into

the Next Generation we must put an end to this disease now it is a disease that robs our loved ones from us and us from our loved Ones it is painful for all of us to watch so I hope that the limited knowledge that we have given you here tonight or have been able to share with you was helpful and um eases that pain a little bit as you deal with your all is in your family thank you is hard enough to understand when you are an adult to be born into it is overwhelming as

you've heard from John bran was a caretaker for the younger Children when our mom became too sick to care for us BR was like a mother to me and her death is too close to me for me to share my experience living with ad I've been reeling with sadness and grief since her passing and even though it is a blessing that Fran has passed and she and she is finally free from ad so instead of speaking to you about my living experience with ad I want to share with you how I cook today and how

I am proactive in the battle against Ad 11 months ago I was worried No I was terrified every forgotten word or misplaced item or forgotten task sent a charge of Terror through me to my core I was sure that I was going to get Alzheimer's disease I had stopped living a normal life and started to live as though I was at the edge of a dark Journey known as Alzheimer's disease I decided it was worse for me not to know whether I had the mutated Gene that causes a in my Family than it would be

to know the truth and deal with the results whatever they might be on my birthday in 2003 I went to NIH to receive my results of genetic testing that I had participated in after the appropriate counseling with my partner Scott my brother John at my side I was given my results I do not carry the mutation that causes ad in my family I sat in stunned silence it was not until I realized that My children would not have to live through the hell that many of us here tonight have to live through did I Cry

I cried with joy for my loved ones and myself and sobbed for my siblings and other family members that still had to live with the fear and uncertainty and in some cases the certainty of Alzheimer's before any of us had the opportunity to find out a genetic results we look for ways to take back part of our Lives to remove ourselves from being victims of Alzheimer's if you've been only for a little while in April of 1997 John and I was sitting in his kitchen deciding what we might do to fight this disease I had

been involved I had been involved in another organization that held successful fundraisers using bicycle rides and I asked and John asked if I thought we could do the same I told him yes I suppose we could but it really is A huge undertaking that was the end of the discussion two months later while I was raing John's refrigerator he came home and said to me so what we need to do to make this ride happen surprised I responded oh you were serious he was we started the memory ride with five Riders and a lot of

family and friends to support the Riders one sibling LED out a route another sibling worked on making signs for the Riders to follow Another worked on organizing Crews at pit stops another contacted places for us to use as pit stops friends became involved as medical support and massage support soon we were ready to go in 1997 we raised $1,700 it has been s years and the memory ride has become a successful fundraising event raising over $575,000 100% of this money raised by the ride participants has gone to research our cost of fundraising is 0% All

of the overhead expenses are covered through the registration fee corporate sponsorship and donations from merchants in all three states that The Ride Now passes through as well as companies in other states that our volunteer production staff members work for the production staff at Memory Ride is an all volunteer group of dedicated people who are touched by the devastation of AD the staff consists of members of Fortune 500 companies to owners of their own Companies to just everyday folks who want and need to do something about Alzheimers the memory ride is a two-day three-state event from

Brattle Baro Vermont through ke new Hampshire to Boston Mass it attract participants from as far away as Oregon Pennsylvania North Carolina Washington DC and this past year we had International Riders as well we are a fully supported ride Riders and crew are provided with pre-ride support this being people to Connect with for training and fundraising questions of concerns the Riders are required to raise $750 to ride and the crew is strongly encouraged to raise money as well we provide a medical team a massage team for the Riders sag crew to move gear and support Riders

on the route we provide meals on Saturday and Sunday Riders and crew may take advantage of indoor sleeping accommodations in the Fitchburg high school on Saturday or they can camp out Under the stars in the courtyard Saturday night accommodations include Showers of course you can always make arrangements to travel and stay at local hotels on Saturday evening the memory ride route is designed by a professional bicy to accommodate all levels of skill and the pit stops provide riders with snacks water juice and fruit medical and bicycle tech support as well as Rider Support Vehicles roam

the route both days to make sure our Riders needs are taken care of Saturday evening There's an opportunity to participate in activities in past years we have had games live music karaoke presentations from medical professionals and an opportunity to sit with other participants and share individual experiences about Alzheimer's disease Sunday we have a police escort escorted Victory ride into the closing ceremony Where we celebrate with the families and friends of riders and crew the accomplishments of such an incredible event the 2004 Memory Ride promises to be another successful event we are anticipating 200 Riders this

year the writing field is limiting so please register early to reserve your place in this amazing life experience if writing is not for you then please consider joining us in Support of the Riders and register his crew it takes a lot of people to support the Riders on their Journey if you are unable to join us on the memory ride the closing ceremonies are a public event and your cheering would be greatly appreciated by the Riders as they end that Journey Memory Ride Al also offers many opportunities to volunteer throughout the year please contact the

ride office for information about Volunteer you can Memory Ride can be reached online at memory ride.org or by calling the office we have broke Shores available here tonight for anyone interested if you would like to donate but do not know any participants please send your donation and it will be applied to any of the participants that may be struggling with fundraising all donations are always gratefully appreciated each of us here tonight has been affected by or is affected by Alzheimer disease and we can each do something to fight ad help us put an end to

this devastating disease please help us end the loss of any more precious memories because no one should forget how to ride a bike thank [Applause] you good evening as I prepared for this presentation I wondered what can I say that you don't already know what can I say to Enlighten I realize nothing I would imagine that most of you know all too well the trials and tribulations of this disease and that your wounds are as big and sore as mine are I can only hope that I will say something that that will that you will

relate to or understand both intellectually emotionally but more importantly my hope is that what I say will touch your heart and help you to realize that you are not alone in This journey with and through Alzheimer's disease my name is Julie n and Lawson and I am the eighth child born to Julia Nunan who who had early onset Alzheimer's disease which is the genetic form of Alzheimer's we have lost four family members so far far to this disease and we have others on that are on their way to being swallowed up by a merciless condition

they will lose their minds Forever I'll be sharing with you tonight about genetics and Alzheimer's disease the genetic piece is huge and most destructive if not supported with accurate information and sustained by professionals that know and understand the whole of knowing and living with genetic information our mother and her identical twin Agnes were the carriers of the AP Gene located on chromosome 21 this is a dominant gene and it means that if we Inherit this Gene we will with 99% accuracy inherit Alzheimer's disease it took many years to find out which mutation was responsible for

Alzheimer's in our family we first looked into finding out which Gene carried the mutation in our family when we first looked into finding out which Gene carried the mutation in our family it was costly and we didn't have a doctor that was willing to help us pursue the Information through the years as as we continued our work with research projects we started participating in studies at the national in Health it was there that it became apparent the importance of knowing for sure what exactly they were dealing with it was twofold once they knew for sure

what disease they were dealing with they would also know what Gene was at work destroying our minds as many of you know there are only Three known genes that cause early onset Alzheimer's disease they are located on chromosome 1 14 and 21 and the Alzheimer and the Alzheimer's association's back sheet about genes and Alzheimer's disease says these mutations are rare there are only about 200 Family Lines in the world that are known to carry such mutations I've made copies for anybody who would like more information on that What does all this mean to us as

a family and individuals to be able to know whether we will lose our mind to this disorder that erases our lives or will we we watch and care for those we love and cherish lose their mind standing by unable to stop the devastating effect of a disease that has already claimed so many loved ones I stood by watching my mom and then my aunt hoping believing that this would be the end of Alzheimer's disease in our family then when it re-entered my family showing up first in my sister Fran and then my sister Meen the

hardcore truth that we were all on a journey that was going to be filled with many heartaches became our reality we could not begin to imagine how painful this journey would be but we knew that we needed each other and because of who we are we decided to be proactive the in intertwined emotions of Genetics are beyond words and I struggle to express the continued tossing to and fro of one emotion against another complete opposite feelings based from the same Source how could this be I speak not of opposing emotions that one might experience when

you view a beautiful flower of joy and then of sadness that it no longer grows in your garden but I speak of emotions that are posed but filled with great Passion because this is about life human life And many lives at that yet the genetic information has changed and will continue to change the direction and emotional state of family members this is about living and dying with a mind erasing disease for many years to come but for our family this ability to know our genetic Future Has Not devastated us we have all not gone our

separate ways which is the result in some families with genetic Information but I can I can't say that our hearts haven't been challenged with pain it has been a process filled with strong emotion both positive and negative it has been extremely painful as I have watched family members deal with the grave reality that they will face they will live and die with Alzheimer's disease but as quickly as I say that I can also say that the Silence of the unknown is Torturous to live one's life with the suspension of your future your hopes your dreams

your children's future to suspend every possible normal event that might come to pass in your life like wedding plans for your daughters or living to enjoy your grandchildren to become to be to be there to comfort hold and advise your children when they look to you for that input or just simply passing into the adult stage with your own children to Share in events of life the unknown has its own direction that is silent but very real as I have cared for for my loved ones with Alzheimer's disease the silent reality that this too could

be my life weigh heavy in my soul as I would try to redirect my thoughts and emotions to to a place of neutral existence this is a disease I have so much history with that I would wonder about myself if I too might have this Disease boiling away in my brain I worked hard to redirect my concerns and for years I was successful at first my own children didn't want me to know whether I carry the mutation that reality was more than any of us could handle But as time went by our position changed because

we all know the disease very well whenever I would overreact or forget something we all felt a twinge of Despair and I could look in their eyes and I could look at their faces and I could know that they were worried is this Behavior because of Alzheimer's disease I also felt the same emotional pressure when I was with the sibling with Alzheimer's disease I could see my own possible future in their lives then my heart would get pulled and I would start to question my behavior all over again stress can make you forgetful So compound

my life with the death of two siblings normal parental stresses of raising children uh teenagers today dealing with Alzheimer's disease in so many areas of my life and it would be safe to say the stress level was high and I was forget in the winter spring of 20 2003 my family and I started genetic counseling first Me by myself to sort out my own thoughts and feelings and then when I had concluded that I was going to find Out for sure I asked my girls and my husband to join me we had many heartfelt conversations

and honest exchanges when I first approached my my children my oldest daughter said to me it's your body it doesn't matter what we think though I value her respect for my process I also knew too well this information could bear heavy results and everyone involved needed to be intellectually and emotionally ready for The outcome regardless of the result everyone in my family wanted to know what our future would hold for my husband what path was his life going to take emotionally and financially for my oldest daughter in her 20s it was more about what her

future would hold should she be involved with someone should she have children and general concerns about living with a mom that would lose her mind for my other daughters who are in their teens they simply wanted to know About today is this Behavior the begin beginning of AD and for me I wanted to know if my own thought processes were a result of stress or was I losing my mind this was probably one of the hardest things I have ever done in my life the conflicting emotions that rage within me were intense as I processed

whether to find out or not for me as an individual hope is a major part of my belief system and if I had the a for Alzheimer's disease where and how could I find Hope how could I live without hope How Could I Live what tools would I use to get myself through the days how that was the big question and I could find no answers when I spoke to the genetic counselor at the National Institute of Health he was the one that helped me to see how necessary hope is for everyone in this process

and that even my Hope was suspended as well as all of my life was Suspended waiting to see if I I would get ad this conversation helped me through the night and in the morning my husband and I found out that I did not carry the mutation that causes Alzheimer's in my family now I am among those in my family that will not face this disease up close and in our own minds but I am a survivor and that comes with its own burdens I have watched individuals go through the same process I just spoke

about with Different results they have had challenges of find they have had the challenges of finding their hopes reentering with life and finding the positive things to live for but it has not been easy I could safely say it has it has for some been downright difficult the biggest challenges of their lives I've watched them deal with everyday life choices and I've grieved their losses with them but I can safely say that all are glad that They know I've watched this disease chart the course for some individual lives and others know what their future holds

and make Cho is based on who they are and what they have always wanted not on the results there have been no two people responding to this information the same way this disease has had profound impact on our family challenging Us in ways we have never imagined sometimes I stop to think about the effects on us as as a Family and I can see that we have probably had conversations that most families have never dreamed of having and we are closer because of it but it has not been without pain struggles and diversity our most

recent loss as a family was my dear sister Fran we lost her in the battle against Alzheimer's disease though I would imagine most of you understand we are relieved for her and her family that she has passed away when Fran realized that she was Going to to lose her mind to Alzheimer's disease she took what little time she had left with her mind and set forth to fighting she started right at home with the kids school informing them if I forget my kids it's because I have early onset Alzheimer's disease she told the orthodontic office

the bangers and anyone in the community that might be affected by her forgetting and then she reached out to the AL Community speaking for the Alzheimer's Association to Congress asking our politicians to put more money into research she spoke publicly to ABC 2020 she appeared on the Lisa given show and she was able to make her last contribution in the fight against Alzheimer's disease a year ago December 2002 with this last PBS presentation fr's battle FR battled Alzheimer's disease about 14 years and in the beginning knowing full well what her battle would be against she

used to Say to me if only I could understand how this disease Works how it goes about destroying the brain I could then visualize it I could visualize the destruction and maybe have an impact on its effect in my brain but I don't really know any better today about Alzheimer's allheim is destroying the brain that I knew when Mom had it FR would be impressed with the knowledge science has today but I am Sure she would be frustrated with a lack of a cure not for herself but for her children for her nieces and nephews

who will have to face this disease she as my brother Malcolm has said just find a cure stop the disease thank you for your time tonight and may God bless you in your journey in and through Alzheimer's [Applause] disease that all [Laughter] the that was something else um thank you does anybody have any questions of the new do you know any other families of the 200 have you had any contact with them at all the uh other other families who have the family je oh um 21 no but I've run into lots of early onset

families yeah um and especially as we've found the PBS piece there been more early Onset families that have approach but I guess I I guess the other side of this is yeah we have the early form of the disease but the the late onset is just as devastating for a lot of families as up early and and it's I guess what I want to emotions I'm having I think the people with late on set are also having similar emotions and difficulties oh yeah and so it's it's emotions don't matter whether it don't care if it's

early or Late it's still hard to deal with and Elaine you know that because you deal with the lot of early stage early on early onet I'm sorry thank you so much for me personally from what I go through with my mother um thank you so much and you bring out in in so many people in this room um that it just helps to hear it and for how much you've gone through it's just thank you and I S my autographs for five bucks a wait a minute what's the number the Number for the uh

the ride 508 56457 okay just want to say this one more time in case people uh some other place when they hear this what is it again 508 564 5700 I'm going this [Applause] year however I do it I'll do it big I have a question for any of you all of you um having been in the field for 20 years and being a big advocate for early stage people and early onset People um what advice do you have there's a mix of professionals and family members obviously what what do you need from us what

do you need from us locally what do you need from the association as a National Organization um besides a cure cure so you know what what do you need in the way of support and services and compassion I we've run into we've run into continually with so far both sisters that have had the Disease and actually our mother and our aunt is that it's a very difficult disease to manage in a younger patient so care is hard to find oddly enough it is hard to find because they're young and strong and um and we were

told because of where the disease hits our brain initially um there's more aggression that's what we were told that National it starts where the brain Starts to eat away at our brain where the disease starts to eat away at our brain there more aggression for because there is a lot of aggression in family members what are you talking [Laughter] about you get to be an Irish I'm sure personality too I think that it's also you know the diseas and we have had a very hard time finding facilities to care and actually my sister fr the

best place that she Ended up in was a brain injury place because you see more younger people I I think which one of the one of the things that I have done is um I have end of life issues pretty well spelled out and um if I become agitated they need to medicate me if I become aggressive they need to medicate they need to medicate me to keep other people and myself safe you know and this is type of things that I've done ahead of time uh but that's a because I've grown up with it

uh I'm Aware of these things but it's awfully hard for families with blade onset because they don't have an understanding like my family does I think another another thing that I I think of when you ask that question is respect of end Life Choices um the battles that we've had to face or that other families of our siblings have had to face because facilities said sure we can do that and then refuse to um professionals really need to remove their own emotions from The care of patients um really it's none of your business how a

patient wants to go it's only your business to make sure that they're painfree and cared for and that's all that that needs to be done by the medical profession and it's a it's a frustration for a lot of us to see that out of the goodness of of a medical profession's heart and their hypocritic oath and their desire to do good that they feed and they medicate and they help um mom was given a hysterctomy four Years before she died she was already in a FAL position there was no reason that that should have happened

but at the time it was not acceptable that end Life Choices were respected but there are still places and doctors that can't let go of I need to do everything that I can do for this patient and and it's it's it's more painful for family and patience to watch their family linger such in such a way I think that also um One of the things that would be helpful is in talking with um families that have that are dealing with Alzheimer's is to address the end life instead of shying away from it and being fearful

of talking about this disease that's going to kill us um address it head on so that the person that's being affected mostly which is the person with a disease can say what they would like and the people around them will know and it's it's a Very difficult subject to talk about even with someone that's healthy never mind talking to someone that is in the process of dying so just a Sensi sensitivity and encouragement to talk about those issues I means we need early diagnosis to involve the person with the disease we don't that the other

one the one other thing that I can think of that when you ask what can be done I know there's a lot of confidentiality and doctors can't share names of families That have this if the Alzheimer's Association or somebody could pull together a database and when a family says please give our information to another family to just have there's nothing that we can do for one another other than be there but early onset does affect families differently you know although it's very similar to late stage or late onset it's different it's different when you know

you have children that are 20 Years old that are going to watch this happen um being able to connect and and we haven't had that resource isn't available you know and would like to make that resource guys um did everyone in your family get tested everybody everybody has been part of the study with the exception of one um did you all find out all of us have not found out yet how many I find out just you guys yet well my sister Kathy that died from cancer did not find out Okay and the autopsy was

done but family the children would prefer not to know so that's you know their their choice so my brother-in-law has decided not to do that confidential and um so what happened is in the mid 90s we all gave our blood and so um the authorities know but we don't know you know and and very few people know I'm sure that you know they keep that confidential so so statistically they know yes they know statistically And they know who has it they say that because I 12 um my mother had all but I was under the

impression that um they you know MRIs don't show anything that the only thing that shows is you know in autopsy when they look at the brain after someone who's already died so I I was under the impression that MRIs meant absolutely nothing and I didn't know that they were blood tests now that they I mean my mother have been tested to be all Sympatic not early onet it's different oh it is yeah yeah we have a rare as Julie said in her speech a rare genetic form which is so they look at them completely different

um the the symptoms of the disease are the same but the disease itself and the way it progresses and H the way it happens to somebody when it happens is different and maybe Paul do you have something you would like to say there that it's a timing issue the Chromosone 21 um is thought with inter interacting with some of the other chromosomes to set the timing for the disease and uh folks with the early onset um have a particular mutation and a particular place um that causes the timing to go AR I think we have

to remember that it's so easy and it's so exciting to think we can find out if we have the gene you have to remember that the reason our Genetics was done because we could help science so much we're willing to do that but we can help it's expensive very expensive to find out um doing genetic study on a person's blood it cost a lot of money and so therefore they're not doing that to everybody that has symptoms of Alzheimer's disease we just fortunately finally after begging medical authorities uh we we got the opportunity to be

of help in a study and therefore it it behooved them to find Out so um it's not going to be easy I mean don't leave here tonight thinking well we'll just send their blood in and we'll find out because it's it's a lot of money I want to know yeah there's a woman I have a question for Down syndrome people have a tripfiction of chromosome 21 right which increases the timing issue because this family has on 21 also increas Theirs but it's also one and 14 it's an interaction of those those three I said and

it's and it also showed up earlier in our mother so typically typically not always when you when your mother gets it you know whatever parent you tend to get it about the same time but not always because sometimes other genetics can Affect the timing of that um um old I I've had the the disease diagnosed for quite some time now but I haven't progressed as fast as my mother um why I I don't know but it's my mother's twin also got it 10 years after her identical twin got it 10 years after she got it

so there there's not nothing's 100% in when you're playing with this stuff so early on considered what age 40 and Below or 4 that's the new age now it's 60 anything below 60 and Below okay yeah but what different we got to get it young mom started showing symptoms at about 36 about 4 years but that's very rare we on the other I have a question to to change from genetics to the memory right has this idea spread to any other state Besides your three states uh we have contemplated that we're trying to um establish

very strongly here in the New England region um 2005 we are planning on doing um local rides smaller rides to end at the same time in the same location as the three state ride um and then as we solidify our production staff then we will we will look at other states and other areas of doing R because I have an idea of in Minnesota it's flat we'd love To I'll talk to we're about jly and I were out in Minnesota for the filming and a lot of this forgiving after afterward it is what we'll just

have to do a longer ring how many miles 150 two days it's a great time it's a saw but and a great you'll have to edit that all of you right I do I'm going to this year first time Uh I have three or four times out of the times we done it I don't I broke my back and and my front side just weighs it down a little too much it's very painful so I just do a lot of work the thing that's really held us back is money in order to produce the ride

you know getting uh advertising getting it out there and then uh we we are all volunteer we do this along with Our other jobs so it's you know we we're just looking for a corporate spons so that could make it into a different ride they could advertise more so it's slow although it's successful if we've raised in seven years 575,000 it's not too slow well we we'd love to see it grow faster you know the amount of work we'd like to see a million dollars a year and I don't think that that's unreasonable a million

dollars is a lot of money but for the Amount of work that each of us has to do to put it on because it's really no different when we have right now we had this year we had 100 Riders and and the amount of work it takes a few more people but the planning really is the same if we have a 100 riders or if we have 10 Riders so with corporate sponsorship we could get many more Riders and we would have to provide a paid St that point but with corporate sponsorship we could and

we could make a Ride happen that would bring in millions of dollars Paul read a check with how are your two sisters Moren and Fran how are their children de they're around struggling on a day-to-day basis going through counsel some of them are you know they're all handling it in their own in their own way Marin's children are shortly behind myself the oldest is about two and a half years younger than myself and there Are others who are not much further behind they're all in their mid-30s except for for they're all in the 30s now

so it's it's time to start worrying about that for them and they will all make these decisions and we'll support them on making a decision whether to find out or not as time goes on them one when you say find out it's a 5050 then it's it's an absolute 5050 for each of them because because maren had it um but as you know the the four of as the four Of us have said aside from Butch none of our children are at risk because we didn't we did not carry it right but have the these

nieces and nephew or n that are in their 30s and have not found out have they ended up having their own family are they some of them have I I think it's interesting because um we some of them may have found out and we don't even know that yet okay we did hear that one um one nephew that got his results is about the same time John did He does not have the the Jean but um we haven't been informed you know it's they're not required to tell us and then how do you tell when

you have the gene how do you go about telling the extended family do I as one of them said do I want to announce the next family tragedy we're talking about a lot of emotions here and uh we we all know the disease well so it has affected um the nephew that found out at the time That I found out he was there the same day and um we hung out on Saturday night together and I was going early we made a plan that I would go early and he would go later um so that

I would be out of there so he wouldn't see me and I wouldn't see him so we wouldn't know if each other had the had the gene um and he what he said to me Saturday night was if I call you and tell you I'm Dating you'll know I don't have it which said to me that he's lived his life up until the age of 30 not getting serious with anyone because of the possibility of the disease he called me and said I'm really serious with this really and I jump for joy you told them

you were dating too right no my wife was L next smart did you I I just had a comment I if I for a party a family and I found out that I didn't carry mutation I think I feel such guilt for the we do we do there a survivors thing that you um we just grieve so much for our SS and we grieve for our nieces and nephews and I celebrate for them when they know that so so when you have this counseling prior to finding give it to you afterwards too we Could well

could it's really up to them to yeah individuals to find counseling to deal with their own issues once the genetic has they like to know when you're going in that you have counselor on the other side regardless of what your results are going to be it's very similar in talking with some people it's very similar to um I've talked to guys from Vietnam that have come back and they're body next to him was killed and they came back and They had to deal with that and so it's it's called Survivor guills yes and it's just

it's just a process that you have to go through it's it's different for all of us um John's survivors guilt is much different than mine I'm the youngest so I'm I'm really removed from Butch by you know four siblings and and that makes how I feel about not having the mutation different than how John feels about it being the next youngest in that line and maybe how Patty feels Because she's escaped it but other siblings that haven't and I'm I'm thrilled for my siblings who don't have it I think it's great and and I want

them to keep going on you know um because I'm I'm doing the best I can with keeping on going on you know and uh I drive my wife crazy CU I I don't want to slow down I think it's great though that that you can say that and I me every single one of you did have it then how could You support the ones who didn't or vice versa you know what I mean I mean I just know that you know being a part of a big family you know when my mother you know was

sick with Alzheimer I we did I mean told because my father died and then my mother she never recovered from his death and um I mean there was definite diversity there were family meetings that we swore up and down we would never do them again because this out of that one this one we shouldn't do this I was The scheduler so I was the one okay you have basketball on this night do this and you know taking care but I mean it's just you all come together and you do what you need to do and

you take care and I think it's great that well we had to go through the process but I'm just saying that I think everything you know there's a reason why you all don't have it and you can support you and you can say to your sister that it's okay that you that you Don't have it it's okay that do damn it I don't know that's just how I how I would think no that that is the way that I feel great I'm through you guys are great good teachers good teachers thank [Applause] [Music] you [Music]