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Alzheimer's blog

With Mayo Clinic health education outreach coordinator Angela Lunde
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February 15, 2008 12:49 p.m.
Sharing the pain of early-onset Alzheimer's
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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.

22 comments posted
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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
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