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    Angela Lunde

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  • Alzheimer's blog

  • Feb. 16, 2008

    Sharing the pain of early-onset Alzheimer's

    By Angela Lunde

29 comments posted

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

blog index
  • 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

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