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Old 11-30-2008, 01:55 AM   #1
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is early onset always genetic?

my mom is in her mid fifties, she was diagnosed in early 50s, my sister thinks it prolly started developing in mid 40s late 40s, but we couldn't tell there was anything wrong with her till early fifties...

anyways no one in my moms side at least to my knowledge has ever had dementia, let alone dementina in 50s,

the neurogolist told me you can't even be sure it was the genetic kind, because of the fact that no one else has had early onset alzheimers b4 let alone any history with dementia.....

so anyways this scares me ********..

cuz i do NOT, want to have to have a 50/50 chance of by age 55 of being incapable of living alone, my life is horrible enough as it is.

 
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Old 11-30-2008, 08:35 AM   #2
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Re: is early onset always genetic?

I have yet to find any research that gives you even a 50/50 chance. They do suspect a genetic component but that doesn't mean you will get it or that a parent has to have it in order for you to get it. They are just not far enough along in the genetic research to make any difinitive statement. It also appears to have a very random nature striking people with no history and leaving along those that have histories riddled with the disease. There is definitely components beyond genetics at work as well.

My grandmother had ALZ, as did three of her sisters. My Mom has ALZ as did several of her siblings. Their onset was scattered from the early 60's to late 70's. Yet, even at 57, I am not going to spent the rest of my life worrying if I will be the first of the next generation. It is not what I would chose for myself or my family but we will deal with whatever comes our way just as we have done in the past with Mom and Grandmother.

Hopefully if I am next, by then there will be a cure, better way to treat the disease, or a better understanding of how to prolong cognition. I chose to look on the bright side either way. We cannot chose our genetics and in many cases we cannot chose which diseases come our way.... what we can chose is how we deal with them.

Love, deb

 
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Old 11-30-2008, 08:41 AM   #3
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Re: is early onset always genetic?

You may have heard that a real cure, something that reverses the damage, is in the pipeline, coming from Scottland within 5 years or less.

So cheer up - not only will you probably not get this disease, but if you do there will be a cure by then.

A way to be satisfied with life is to be thankful every day for what you do have, even it if it is only fresh air and the chance to go out for a walk. If you start counting your blessings, you will be amazed and how far better off you are than most other people in the world. Most do not have access to a computer, for example, to get help and advice from the wonderful people on this Board!

Good luck!

Love,

Martha

 
Old 12-01-2008, 02:39 AM   #4
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Re: is early onset always genetic?

The earlier the onset of the disease, the more likely that there is a genetic component. Several genes have been identified which are linked to early onset AD. You will find a lot of info on this risk in the literature on AD, and your doctor can give you the latest advice (keep in mind that books can be 2 yrs or more out-dated, from the time they are written, published and in the bookstores). On the other hand, the majority of early onset cases do not appear to have a family history. There is much research into the causes of AD, and it may be determined that those cases are due to environmental causes, a brain injury from an accident, or some other reason.

Studies do show an increased risk of dementia when a parent has early onset AD. You might view the risk of dementia as being similar to being at an increased risk for diabetis or high cholesterol due to one parent's history -- by no means a sure thing, but something to let your doctors know about.

The Pittsburgh Post Gazette is running a very thorough feature series right now about early onset AD, which can be found online.

DH was also diagnosed in his 50s without a prior family history of the disease. I worry for our kids, but believe that better treatments will become available within the next decade. I also suspect an environmental factor in DH's disease, since his 1st wife had a brain tumor and a child (now in 40s) from that marriage has Parkinson's.

Last edited by Beginning; 12-01-2008 at 02:42 AM.

 
Old 12-01-2008, 03:59 AM   #5
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Re: is early onset always genetic?

So much is not known about Alzheimers...They are discovering more and more all the time so there is no way for anyone to be certain of anything. The only thing you can do is have genetic testing to see if you might develop the disease.

 
Old 12-01-2008, 08:41 AM   #6
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Re: is early onset always genetic?

I spoke with a national AD Research Center about genetic testing. They said we could have it performed, but that they did not recommend it to their patients' families for several reasons.

First, they said that identifying that you were at risk could adversely affect the way you live your life. It is possible that individuals would live in fear of something that might not happen or which is expected to be treatable someday. They felt that there was a risk that people would make life choices based on that fear, as well as possibly being psychologically damaged (depression, etc).

Second, with the current state of health care, it is possible that identifying that a person has the genetic markers could potentially put that person's ability to obtain insurance, including long-term care insurance, at risk.

Third, even if an individual is told that they don't have any of the currently identified genetic markers for the disease, it's possible that new genetic markers will be identified. Research is continuing, and new genetic markers are still being identified. DNA testing is therefore of limited value.

Fourth, AD can be diagnosed in individuals who don't have a family history of the disease, or who do not have the currently identified genetic markers. Not carrying any of the currently identified markers is of limited value since you might still get AD.

 
Old 12-01-2008, 01:58 PM   #7
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Re: is early onset always genetic?

Are they sure it is Alz? My wife (53) has Pick's disease. Similar to ALZ, but affects the frontotemporal lobes. No family history that we know of. There is so little known about this, I've read that some cases could be genetic, but most likely this is a random case.

My 15-year old daughter has asked me if it is genetic. I have just told her probably not. No point in her spending the rest of her life worried about something that most likely won't happen. And even if it does, what can you do? Worry has never solved any problem.

Best to live today as best you can. ken

 
Old 12-01-2008, 02:37 PM   #8
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Re: is early onset always genetic?

Hmmmm.....interesting thread! Martha, you give us much hope mentioning the Scottish testing!

Some of the info my family found was that Alzheimer's can show up genetically in larger families with more children than others! It seems the older "children" were more apt to be affected...perhaps because something that needed to be stimulated in the brain was not done when more children arrived. Interesting!

The other easily proved cause was hard bumps on the head sometime during the lifetime. (I've had 2 of 'em......oh, oh....)

I see an increase in different syndromes at school...especially Autism/Asperger's...and surely environment/food additives can also be blamed....this HAS to be a cause for the increase of Alzheimer's also!.....Pam

 
Old 12-01-2008, 03:25 PM   #9
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Re: is early onset always genetic?

Thefaint,
Was or is your Mom on any medications? Sometimes meds can give symptoms similar to ALZ. I wish you well.

 
Old 12-06-2008, 03:34 PM   #10
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Re: is early onset always genetic?

Quote:
Originally Posted by Thefaint423 View Post
my mom is in her mid fifties, she was diagnosed in early 50s, my sister thinks it prolly started developing in mid 40s late 40s, but we couldn't tell there was anything wrong with her till early fifties...

anyways no one in my moms side at least to my knowledge has ever had dementia, let alone dementina in 50s,

the neurogolist told me you can't even be sure it was the genetic kind, because of the fact that no one else has had early onset alzheimers b4 let alone any history with dementia.....

so anyways this scares me ********..

cuz i do NOT, want to have to have a 50/50 chance of by age 55 of being incapable of living alone, my life is horrible enough as it is.
Any and all cases of early onset AD must be treated as though it is a case of sero-negative Syphilis or Lyme Disease and the patient should be given at least 6 months of high dose minocycline. AD and General Paresis caused by Syphilis, for example, are clinically identical in their presentation. Infection must be considered as the primary cause of any early onset AD, and antibiotic therapy is the only possible cure.

A recent study of several hundred adult onset hearing cases ( Spirochetes in otology: are we testing for the right pathogens? go to pubmed.com and look it up.), resulted in 5% of the people being diagnosed and treated for neurosyphilis. About 2% of the cases had some antibody response to Lyme Disease, but the Drs did not consider the possibility of sero-negative disease, which is all too common.

A recent episode of "House" featured an elderly women with bizarre neuro symptoms and she was found to be suffering from neurosyphilis. Now this was a fictional case, but the medical science behind the story was sound. The women was infected while in her teens, she was incompletely treated and the disease went dormant for decades before re-emerging, but of course general paresis was a more likely outcome than was was shown on the show, and Lyme Disease can do the same. Recent studies have shown the presence of Lyme Disease spirochetes in the brains of a high % of AD patients who lived in the New England states. In seronegative cases, the only way to know for sure is to treat presumptively with antibiotics.

Coincidentally, minocycline has proven effective in preventing neuron death in laboratory studies of AD. On Pubmed.com you can research most of the work being done on AD but also about the similarities of AD to neuroinfections.

Please don't let someone you know die of early onset AD without requesting long term antibiotic therapy.

Last edited by duncan1; 12-06-2008 at 03:54 PM. Reason: more info

 
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