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Earlier this week, CBS Nightly News with Katie Couric presented a piece about a company called Smart Genetics who offers genetic testing, genetic counseling, etc... to determine your risk of developing Alzheimer's.
You can view the story here: http://www.cbsnews.com/stories/2008/05/07/eveningnews/main4078733.shtml?source=search_story From my own research and this news story, I have been getting mixed signals as what to do. On one hand I am very interested in learning of my APOE status, but then again I am also scared to find out. What would you do? Any insight would be much appreciated. |
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pg04
I would not want to know...What good is knowing, you would just fret daily and knowing cannot stop it. Instead I would work on finding a cure or getting Enbrel approved. In the meanwhile, take all the natural supplements that we know can be a benefit, eat healthy, do all the things every one should do on a daily basis to ward off most illness' but most of all keep the faith. Should AD develop, you at least know where we are currently, regarding what works and what doesn't. I said earlier, my DH father had EOAD and we have followed the above regimen. He is now 74 and holding his own. jdemattia@sbcglobal.net |
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Since Enbrel is available now, I would want to know so that I could start it as soon as I start showing symptoms. Hopefully by the time that happens it will be approved for Alzheimers!
And, I think I'll go to GNC (supplement store in CA) and start all the things jdm has mentioned...her LO is doing Great! Felicia Rose's Baby famc17@yahoo.com |
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Felicia,
Good point about Enbrel being currently available. I would not hesitate for a moment in pursuing the Enbrel injection if my DH was in decline. I would do exactly as you are doing. Thanks for adding that important bit of info. Jeanne |
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I would want to know as soon as I was identified as a person with future alzheimers. Especially as a scrapbooker I would compile family memories, my hopes, my dreams, what I want my spouse, children grandchildren to know about me and what they mean to me. I won't know the difference but they will have regrets and emptiness and I have had a wonderful life and they gave that gift to me. I want to return the gift while I can. My sister died of breast cancer at 32. She left a 17 month old and a 4 year old. I ask her if she knew she would die tomorrow what would she do. She said she would make a video for her children about her love and dreams for them. 3 months later she died. The tape was never made. Her kids are 18 and 22 and have no memories of her. She missed that opportunity. I won't.
http://www.dolls4alzheimers.com member of AFA just received first grant from them. |
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I got really interested in this question and have been doing a few polls. First question "Would you want to know ahead that you are going to have Alzheimer's in the future. Second question is "Would you want to know if one of your parents will have it in the future and why. I am wondering if I can have your permission to add your responses to my poll? Also if more of you will respond that will give a wider view. I will share results with you when finished or I can post them if you all would like me to. Thank you,
http://www.dolls4alzheimers.com member of AFA just received first grant from them. |
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pg04, I would think long and hard before having the testing. It could destroy your ability to get the insurance coverage you might need. I know that legislation was recently passed that, in theory, makes it illegal for an insurance company to deny coverage based on genetic testing ... but there are all sorts of ways to get around that, and if they want to deny coverage, they'll find a way.
Not to mention, so very little is truly known about what triggers the onset of AD. APOE is a risk factor -- it does NOT mean that you'll actually get the disease. There is a thread just starting up on this forum about a new study that, apparently, indicates that much of what causes AD probably is NOT transmitted genetically. It's "Fascinating new study on Alzheimer's". I've downloaded the paper, but haven't had a chance to wade through the technical jargon yet. Bottom line, I don't think you'd be any better off having the test done, and you might be a lot worse off. |
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Oops, didn't mean to ignore you, dolls4alz. Sure, if you want to use my response, go ahead.
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Thats a very hard thing to answer.My dad has had alzhelmers for about 15 years he is now at perkins and is at the last stage.dad is on a feeding tub,nothing by mouth but just a few months ago we can finally give dad sucks sugar free have to watch him so he doesnt get down to the end and get a small piece off I throw it away when it gets close.Dad is doing great.Now to my answer I would like to know so I can tell my family what they mean to me and that they need to go to groups on this and learn all you can so when things start happening you will understand it alot better and it wont be so hard thats what me and my mom did.I want my family to know that when they look in my eyes I know them and love them so much and that this is just another part of my life I am changing just come see me dont put me in a home and never come see me I still need my family and the touch I now your voice never think that I dont.I have went to the nursing home everyday for the last 6 months and spend time with my dad he know me and love when I rub his arms and back.PLEASE dont treat me like I have NO BRAIN.They is one thing I would like to say that bothers me if you have a loved one in a home done put them there and think they will go away open YOUR eyes is this how YOU would like to be treated in YOUR gold years...waked up.....
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