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Alzheimer's

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.

20 comments posted
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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
February 17, 2008 4:07 p.m.
My husband passed away 16 months ago, at the age of 62, from complications of early onset AD. I wish I'd thought about what the gentleman said at the conference in the beginning of going through this difficult time because I could've had more "semi-quality" time with my husband if I'd lived more in the moment. But it's very hard when you ARE mourning who the person WAS, what could have been, and worrying about the future. I thought we had more time because my husband was very healthy in every other way, very physically fit, etc. and because of that I thought we had more time. Once he was put on drugs to calm him down that was the end of him. Regarding Edsel's post, we too had to file bankruptcy, you're not alone in that. My husband was still trying to hold a job when he was diagnosed so we weren't prepared for this financially either.
- Peggy
February 16, 2008 9:02 p.m.
My wife is 61 years of age. She came down with AD at 57. I love her very much but its hard to see her in this condition. She was a school teacher for 26 years before AD and now she is having this problem. Sometimes I simply do not know what to do. It is very hard for the caregiver but we know it is our responsibility to take care of them and we will. Early onset dementia is not something you can prepare for. We had to take bankruptcy on the 14th of this month, Valentines Day. This is really hard to cope with along with the AD my wife has. I know we will manage becouse the Lord is with us. Edsel
- Edsel McKee
February 16, 2008 6:43 p.m.
How wonderful to know that there is such a thinkg as early onset dementia. Hard to be happy with that? Hey, when you have been told that you are lazy and emotional, to "suck it up" it is a bean of sunshine..Problem now, how do we treat it? I'm 53 is that too young?
- Janice
February 16, 2008 3:16 p.m.
The problem with your speaker’s statement is summed up by an entry in my wife’s journal: “I realize I can no longer be a real person.” The reality is that your speaker may be unable to love, laugh, or eat? He won’t recognize himself in the mirror, much less his wife and family? He may come to believe his spouse is having an affair with one or more of his kids? He may try to attack his spouse, or call the police and report her as a burglar? He may believe he is a small child and has never been married, or had kids. It is not his family that takes away these things, it is the disease that will take away these things. Our support system is not organized to give the spouse the opportunity spend that quality time while he is still cognizant. He/she will have no time to spare given responsibilities for raising the kids, earning a living, and taking care of him. And how would your speaker respond to the advice from the Alzheimer’s Association to his/her spouse to seek ear
- Roger
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