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Angela Lunde
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Angela Lunde
Angela Lunde is a dementia education specialist in the education core of Mayo Clinic's Alzheimer's Disease Research Center at the Abigail Van Buren Alzheimer's Disease Research Clinic in Rochester, Minn.
Angela Lunde
The transfer of information about dementias, as well as understanding the need for participation in clinical trials, is an essential component of the education core.
Angela is a member of the Alzheimer's Association board of directors and co-chair of the annual Minnesota Dementia Conference. She is a member of the Dementia Behavior Assessment and Response Team (D-BART), a multidisciplinary outreach service assisting professional and family caregivers in understanding and managing difficult behaviors often present in dementia. She facilitates several support groups, including Memory Club, an early-stage education and support series, and more recently, helped to develop and now deliver Healthy Action to Benefit Independence and Thinking (HABIT), a 10-day cognitive rehab and wellness program for people with mild cognitive impairment.
Angela takes a personal interest in understanding the complex changes that take place within relationships and among families when dementia is present. She is particularly interested in providing innovative and accessible ways for people with dementia and their families to receive information and participate in valuable programs that promote well-being.
"Amid a devastating disease, there are tools, therapies, programs and ways to cope, and it is vital that families are connected to these resources," she says.
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Feb. 16, 2008
Sharing the pain of early-onset Alzheimer's
By Angela Lunde
The responses from my last posting makes it clear that young onset AD is painful beyond belief and there are as many experiences in living with the disease as there are persons diagnosed.
My purpose was not to minimize the depth of the despair you are going through. I have heard from some patients with young onset AD that despite the devastating shock, numbness, and overwhelming sadness of the diagnosis, there was some relief in knowing they were not 'lazy' or 'crazy' and that their symptoms are due to a real neurological problem.
I heard a gentleman diagnosed with young onset AD speak at a conference last year. His words were powerful. He said, "Please do not mourn the fact I am not who I was, or you want me to be, or we both miss this moment when we focus on yesterday or last year or twenty years ago. We miss living together today, we miss the chance to love, and to laugh, and to be all we can be today, when we are mourning who I was."
I invite you to see some men and women with young onset AD speak openly about their experiences on a Web-cast from our "Meeting of the Minds" conference that took place in 2007. You can find the link below.
More than anything, I am humbled by your words and I am grateful for your candid sharing.
29 comments posted
November 3, 2009 8:28 a.m.
The children with low school level have more of the double of probabilities that those that has studied to be diagnosed with the disease of Alzheimer in their oldness, indicated findrxonline according to a new study. The Alzheimer is a disease that attacks the brain is progressive and degenerative cause problems of memory, thought and conduct. It affects in the attention, decision making, judgment, language and personality. A low school level is tie with an increase in the risk of developing the disease of Alzheimer, this due to the first symptoms as they are: the lost one of the memory that affects the abilities in the study; difficulty in the execution of daily tasks, difficulty in the learning of new tasks; lost of the sense of the time and problems with the language, it indicated the main author of the study, Chengxuan Qiu, of the Research center of the Aging of the Karolinska Institute, in Stockholm, Sweden. Previous investigations indicated that the school level of a person could be a factor of risk for the development of the disease of Alzheimer that is the most frequent cause of dementia.
- James Kildare
November 3, 2009 12:57 a.m.
My dad has just diagnosed with early Alzheimers- he's 60. However he's been having memory problems for the past 2-3 years. I'm 24 years old with 2 younger sisters in their late teens. What can we do to help him and his quality of life? My grandfather (dad's dad) also has Alzheimers but was diagnosed at 88, a good 20 years before my dad. My sisters and I want to get involved so what can we do to help wipe out this horrible disease? Thanks.
- Jamie
July 4, 2009 10:46 p.m.
My sister was diagnosed last year with early-onset Alzheimer's after she lost her job in Sept. 2007. She had a fall at work in Nov. 2007 where she hit her head. Since that time her memory began to decline noticably. After MRI, neuropsycg evaluation and a PET scan it was determined her brain showed some abnormalities that could be consistent with an early Alzheimer's type problem. She is taking Namenda twice a day and Aricept once a day in the evening. Generally she has no problem taking morning meds, but taking her night time meds (Namenda & Aricept) seem to be an issue. She resents being reminded to take her evening medication too. She still drives from time to time locally, but she has gotten lost at least one time that I know about. Taking her car away will be a challenge since she still feels she is a good driver. I'm 15 months older than her, and I worry I may be next. It is so hard to see my sister decline so quickly, especially since she has always had the best memory in the family. Although there is history of Alzheimer's disease on our father's side of the family, I still wonder if her head trauma during the fall in 2007 might have something to do with her condition. None of our relatives who have or have since passed on with Alzheimer's actually had early-onset Alzheimer's. Thankfully we have a strong family support system, but financially the future looks grim for her in a good long term care facility.
- Jeanette
May 19, 2009 9:56 p.m.
My friend was over last night she is 63 years old. She has been talking about how she didn't feel like herself and was having a hard time with easy tasks I told her "Oh you have been under a lot of stress lately don't worry". About 4 hours later after dinner we were talking and having a conversation about cows and she said "Cows? whats a cow? Whats the uses of a cow? She had a blank look on her face. We didn't act as if any thing happened. And she was back acting normal again. I am very worried abut her and later said mybe you should go for a checkup. Please tell me what to do and does this sound like early onset? God Bless You All
- B taylor
December 18, 2008 7:55 a.m.
I also have early onset alz, I am 58 years old. This has been hard to deal with, I have short term memory loss and my spelling is bad and my handwriting is bad. I noticed something was wrong about a year before being told I had alz. I had started a new job and had trouble remembering what I needed to know, which was odd for me, for years I was an insurance adjuster and had to use my brain to do claims, because back then we didn't have computers. I got lost coming home three times from work. After a lot of test to rule out other problems is when I was told I had alz. I no longer can drive, I do fine at home and get up tight when my husband and I go out. I am on two types of drugs and they seem to be helping for now. I fight every day to try to stay positive, but it is hard. People who don't have this can say life is not over, and it isn't, but walk in my footsteps one day and then say that. The hardest thing for me is not being able to do all the things I have always done. I do attend a support group, and I am the only one who has alz in the group. As we all know, if there is not a cure soon, our famalies are going to lose us.
- Sharon
November 18, 2008 7:35 p.m.
I have come to realize that my mother probably had early-onset Alz., losing the ability to parent effectively while I was still a child. When she died, people thought she had declined "so fast," but in fact she had been declining for decades. It seemed that the nearer to the end, the faster the disease progressed. Have others had this experience? Finding there are gaping holes in your own development for the lack of a capable parent? She was a good woman, worked very hard. I have no doubt she loved me, but just was not able to mother effectively. It was very costly in terms of personal pain, poor decisions made for lack of mothering when needed. Now I do my best to accept that she was sick, she couldn't help it, and not to hold it against her memory. Advice?
- Sally
August 25, 2008 8:45 p.m.
I will attempt to answer some of your questions: barbh: you should get your sister a professional driving test through the local hospital, we did for my mother-in-law at age 59 and she failed so we were not the bad guys who took her keys away from her. Debbie: You desperately need an MMSE exam and MRI to get a diagnosis quickly and as I am a FNP, sometimes we can start the medication early for prevention while the ruling out process takes place. GloriaC: Test your husbands sense of smell because this may very well be the first senses to be affected. The plaque on the brain may cover the olfactory bulb before the brain itself and the loss of smell may be your first indicator of AD. Also I like to rule out thyroid disorders and high lipids in the vascular system. I hoped I have helped. candy
- candy
August 2, 2008 2:45 a.m.
Hi, My husband was diagnosed 5 years ago at age 52 and had symptoms of depression for apprx. 3 years before that. He has probable alzheimers, but he may have frontal temporal lobe dementia. We cared for him at home, with an aide when I went to work, but in time, he got bored not having more activity and was thrilled to live in assisted living. friend relationships change and family responsibility is surprising. Most people want to know if he still recognizes us, but he seems more like a "stroke victim" semi conscious, no talking, walking, moving, etc. Recognition never seemed to be one of his symptoms, early on and midway. He is taking lots of anti-psychotic drugs because of earlier uncontrollable behavior and is able to be cared for. He is in a skilled nursing facility and seems happy enough there. It is a misunderstood disease and harder when they are young. He has maintained his weight and hasn't been sick even with a cold, all this time. Best wishes to you all---it's a lonely road. A piece of advice-get financial affairs in order. It's very expensive to care for someone with a terminal disease.
- elizabeth
June 12, 2008 1:17 p.m.
My sister was diagonsed wit Ad 3 months ago and now shw is not taking her medication,I fill her pills up every other day and when I go to check on her they are hidden somewhere. When i ask her about it she tells me they are extras. i have talked to her doctor and she tells him she is taking her meds and i put extras out to confuse her. She has had 5 car accidents so I took her car and explained to her that my car is a lot more comfortable and with the gas prices 1 car is enough. She tells her friends i forbid her to drive and a few have questioned me on it.Am i doing the right things?
- barbh
April 13, 2008 11:12 a.m.
I was diagnosed with AD five years ago at 42. It has taught me many things. It has taught me that we are a lot less in control than we think. It has been a tough road for my whole family. The loss of income and insurance. The loss of those who I thought were friends. And the disease that takes away so much. It has shown me those who truly love me and those who only say they do. My wife and two sons have been there for me. Rock solid. My doctors have been very understanding and supportive. Something I know to be real and true is told by Yeshua in Rev. 21:4 "He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away." Above all God has taken care of us. I have hope because He has shown me His love. May you too find His peace that passes all understanding.
- Brian
April 8, 2008 11:11 p.m.
My concerns have to do with me. I am 41 and have been having memory problems for nearly 2 yrs. My doctor told me it was just due to stress but it has slowly gotten worse. I have noticed that I have a hard time with names, spelling, getting the right word for the situation, sometimes I just keep my mouth shut because I just can't think of the words to say. I get lost going to places that I have been for years. I have also started totally forgetting things that I have told my children. I get real mad because I think they are lying(then one of the kids will say "Mom thats what you told them to do") I can't remember it at all. Any suggestions on where I can go from here for information. Thanks in advance. Debbie
- Debbie
April 3, 2008 9:13 p.m.
My friend is 56 and suffered respiratory failure about 1 year ago due to complications of bacterial pneumonia. She suffered what she has thought is memory loss due to the loss of oxygen. I have known her now for about 8 months, and have come to see all of the symptoms of early onset AD, to one degree or another. We have become very close friends and she is like a sister to me. tonight I told her,I thought she should ask the doctor about AD. She was puzzled by my suggestion and quietly asked why I thought this. After telling her of some of the things I'd observed progressively getting worse over the last 3 months, she reluctantly agreed, this may be her real condition and deep in her mind suspected it herself for some time now. She admitted she is afraid and doesn't know what to expect. I came straight home and got on line to find out more about what she and I will face in the future. Her family is not emotionally close and is of no real support in her life. My sisters and I have adopted her as one of us and will all help her cope with what she is going through. I will definately be seeking a support group near our hometown. As I read all of your stories,it makes sense to me what I am seeing now and what is to come. Thank you for letting me share your space, Bless you all.
- Patty
April 3, 2008 8:00 p.m.
Well last time I wrote anything on this site was just March 17th. Now I'm writing to say my wonderful Dad passed away yesterday. I can't not believe how fast this horrific disease had totally consumed my Dad and now he is gone after only 3 years. Sunday my Dad did not sleep at all, he hardley slept any days, and then finally fell asleep about 7am on Monday. My step Mom tried to wake him up about 7 that night and he wouldn't wake up. She called 911. She called me around mid night and said they were putting my Dad on a ventalater until I got there. He lives in another state. I got there around 4pm the next day. My Dad was so small. This young 57 year old man looked 100 years old. All his organs were starting to fail. We told them the doctor that we were ready to take him off the ventalater, the doctor told us he wanted to wait until the next day because he wanted another brain test done. We were all so upset, no matter what we said they made us wait. So we sat with my dad all night and talked to him and told him how much we loved him. They finally took him off ventalater at 10am and he was gone at 10:23 yesterday. My Dad is a doner and everything that is still good will go to someone in need. My Dads brain will be donated for research for this dignity robbing disease. It has to be stopped. Thanks for listening, I will still visit this site offten. Good luck everyone and may God be with you all.
- Charlene Milligan
March 30, 2008 11:39 a.m.
Gloria - in my wife's case, the earliest sign was short term memory loss. Then she started telling me the same things over and over and would ask me the same question repeatedly. From there, it advanced to irrational behavior. Through all of these phases, she would not admit there was something wrong. It had to be me. Tough road to hoe. Good luck.
- Ken J
March 28, 2008 10:10 a.m.
Hi Gloria- With my Dad, one of things that was noticable was his speech. He started to stuter when he would try and talk and then he would be trying to talk and he just couldn't get the right words to come out. He became real quiet which is not like my Dad at all. I would always ask him "Dad what's wrong" and he would just say he was tired. So anyway, that just one real noticable sign. Good luck :)
- Charlene Milligan
March 26, 2008 1:49 p.m.
I have read all the comments on early signs of Alzheimer's and I haven't really heard what the first signs are. I think my husband may have it but I'm not sure. Like most men, he won't go to the Dr. about it because he doesn't think he has a problem. He has gotten so sloppy around the house. He doesn't pick up after himself anymore and he used to be so good about that. He still keeps himself busy, indoors in the winter he kept a hobby going and now he's outside doing projects. He had an accident yesterday, his boat trailer fell on him and flipped him backward and he hurt his back pretty bad. I think he just doesn't pay anough attention, anymore. Some days he stays in bed all day, too. He has been very depressed this last week and I can't get anywhere with him on seeing Dr. or just checking out these articles. I'm not sure if this is the onset of Alzheimer's or not. I sure would like to know. Thank you, Gloria
- Gloria C.
March 13, 2008 4:33 p.m.
My Dad was diagnoised with this horrific sickness only 3 years ago. My wonderful fun loving Dad was strong 240 pound man and now is only 104 pounds. He doesn't know who I am. He doesn't talk, he doesn't do anything on his own. I just got back from seeing my Dad this weekend and he was totally different from when I saw him last. He has lost all this weight in the last 7 months. When I saw my Dad I just cried. I couldn't believe this little frail man was my dad. My Dad is only 57. This has been a nightmare and especially for my wonderful step Mom who is detirmend to take care of my Dad for the rest of his life. I was so stupid when I heard of my Dads diagnosis, I should have learned more about what was going to happen to him. I had no idea. I thought he was still going to be a complete person, just maybe no memory of me or of his life. But I coulnd't have been more wrong. I am so heart broken over what has happend to my Dad and my poor step Mom.
- Charlene Milligan
March 2, 2008 12:44 p.m.
For Edsel, Sorry I didn't get back to this site sooner, not used to "blogging"! I want to clear up something I said about the meds, we tried a few different antidepressants & antipsychotics, Lexapro, Seroquel before he was confined to a nursing home and those did NOT hurt him, just calmed him down, made his life more tolerable for him. It was in the nursing home, he was put on haldol which is an old, powerful drug, and that's what changed him. I wouldn't worry too much about Abilify. He was also on Aricept. Peggy
- Peggy
February 24, 2008 8:51 p.m.
Is there any relation between alzheimer and osteoporosis?
- amy
February 19, 2008 2:22 p.m.
our 44 yr son was diagnoised with early on set of alzheimers in 2007 he is a slim very active person he had a mri in march 2007 & 8 mo later another one there was no change he has trouble writing his name .what can we do to help him
- elaine
February 18, 2008 7:43 p.m.
I came across this site by accident, but when I read 'Early Onset Alz', I couldn't help but stop for a moment and read the comments. In my situation, my mom was diagnosed with Early Onset AD at the age of 48 years old, only about 6 months older than I am now. Unfortunately, her doctor refused to diagnose her but worse, would not refer her in order that she might get the early assistance she needed and the direction we, as her children, craved. Without going into the heartbreaking details, suffice it to say, that I know your pain. My faith was changed and strengthened forever through the experience. I understand why it is so difficult to appreciate and live in the 'now'. The most critical advice I can give as a previous caregiver (we lost mom in 1995), is to let others help you and to join a local support group - it will be invaluable. Knowledge is power. There will be joy within the pain, be open to it. Enjoy the time you've been given! Bless you all!
- katie
February 18, 2008 2:23 p.m.
Oh, My!. So many people suffer with this condition and it is so difficult for the caregiver. My husband is 74 and has been having symptoms for several years. At first,he made me so angry because he would have good days and then bad days. So it was hard to judge which THIS day would be. Now, I just accept that any good day is a blessing and let the bad days follow their course. Our family doctor gave him a simple little standard test and said it was not AD, because he could accomplish 6 out of 8 of the criteria. Yes he could draw a clock at 2 o'clock and he could remember something from several years ago.. BUT he was having one of his GOOD days that day. Still, he did not know what day it was or his social security number. Since that time, I have seen a lot of digressing and really he can't remember when he last ate a meal.. He remembers ME, still, but forgets his grandchildren's names. So it is getting worse. He refuses to see a doctor, since our doctor said he was OKAY
- sue
February 18, 2008 10:48 a.m.
i was reading the comments, very good to know that there is a support group online. I'm 57 my husband is 77, a senior marriage. My husband is retired, I'm still working. We are just in the beginning of getting test results results. I'm thing the beginning of alz. I'm reading some say spend quality time, thank you. I've been focusing more on myself. I will remember that my husband is the one suffering. I'm learning patience. Keep the comments coming, many others need to know. Also everyone don't forget PRAYER THANKS HESTER
- hester
February 17, 2008 8:08 p.m.
My mother had Alz. but there was never a diagnosis until she was 80! Looking back over the years, knowing what I now know it started when she was in her early 60's. She had never been a pleasant or nice person. Guess what--it was there all along. Now we know why she was so nasty at times; after the diagnoosis and the use or Ariceptshe became more human. Still her sudden death at age 80 wa a blessing. I worked with an Atty. who was diagnosed with Alz. in her early 50's. This is an insidious disease that needs ever so much more research. Spare us all!
- Pat
February 17, 2008 4:26 p.m.
This is for Peggy. Peggy I am so sorry to hear about the loss of your love one and having to take bankruptcy at the same time, it must be very hard for you. If you don't mind telling me, I would like to know what drug your husband was on to calm him down. My wife is on Abilify 10MG for this same reason and I am concerned with your comments. Edsel
- Edsel
29 comments posted