Do I have the test???

[salacious]

ok, this has been on my mind for a while, and i know no matter how many peoples opinions i get in the end i will have to make my own decision but i could do with some other peoples opinion too.

both my grandad and now my mom have had alzheimers, and as i have been researching alzheimers for a long time i know that it can be hereditary, ive also found out that you can find out if you have a higher possibility of getting the disease if you have a genes test.

my mom died aged 44 of the disease just a month ago, she was diagnosed with it at aged 40. my grandad was diagnosed aged 48 and died at 56 (in 1994). i know it might seem weird to some people but sometimes i would like to know if i have it, i mean if i did have it for instance would i have children? would i want my children to go through what i have in the last 4 years (im only 23) plus also my partner is terrified that i would have it and rarely lets me talk to him about it.
i need help and guidance please! xx

love sara

 

[Helen33]

Hello Sara

Oh dear Sara this is a difficult one I can only tell you that my sister-in-law had a similar dilemma a couple of years ago because of Huntingdon's in her family and it took her ages to decide whether to have tests done. Actually the whole process was making her ill. She was worried about herself and her children. Anyway in the end she decided to have it done and the results came back with positive results for her (meaning she and her children hadn't inherited the gene). I don't know what made her mind up for her in the end, and I don't think she knows either, but at a guess I would think that the process of wondering and agonising needed to come to an end because of it making her ill and she needed to be able to move on one way or another. I do know she asked lots of people and probably received lots of different opinions but I guess this is all part and parcel of it.

Whatever you decide Sara we are here for you and I, for one, wish you all the very best.

Love

 

[gigi]

Hello Sara...

ive also found out that you can find out if you have a higher possibility of getting the disease if you have a genes test.

...

But you're not guaranteed to get it..there are no guarantees either way.

Like Helen..I know someone who is now 60 whose mum had Huntington's Chorea..she had a gene test and discovered that she too COULD develop this condition..and if she had children could then pass it on....So she denied herself marriage and a family...pursued a career and lived with her parents..her father has just died..mum died a long time ago..she's just retired...is perfectly sound in mind and body...and very alone in the world.

I agree it must be hard to put the thought out of your mind..

and am equally sure that you've started quite a debate here..

It's not long since your mum died...that takes some getting over.
Take your time...we're all here to support you.

love gigi xx

 

[Skye]

Hi Sara

What a difficult decision for you to have to make. I honestly don't know what I'd do in the circumstances, but I guess I'd probably have the test, I'm someone who needs to know, not very good at wondering 'what if?'

It all depends on what would worry you more.

If you had the test, and you didn't have the gene, that would take the worry away and you could get on with your life.

But supposing you had the gene? As far as I know (and I'm open to correction here) that doesn't mean that you will necessarily get dementia, just that you are at higher risk. So you still wouldn't know, but your worries would be increased.

On the other hand, if you don't have the test, is the worry going to ruin your life?

Bear in mind that it's not long since your mum died. You're still grieving, and inevitably dementia is at the forefront of your mind.

Could you bear to wait -- for a year, say?

By that time, though you will still be grieving, the pain will not be as great, and other matters may have come to the forefront of your mind.

A very wise doctor once advised me, 'Never make irrevocable decisions while you're on a down.'

Excellent advice. I think my advice would be to wait a while.

But of course, you must do what is right for you, and we'll support you, whatever.

Love,

 

[Helen33]

Hi Sara it's me again

I've just had another thought. One question that could help decide what to do is "If I knew I was carrying the gene, is there any treatment that could delay the possible onset?" Could you actually benefit from knowing at an early stage? For the answers to these questions you would need to seek sound medical advice.

Love

 

[Margarita]

my mom died aged 44 of the disease just a month ago, she was diagnosed with it at aged 40. my grandad was diagnosed aged 48 and died at 56 (in 1994).

I would personally do it if it was availably to me . So I would say yes for you, but at the end of the day like you say its up to you .

This is good link to read .

http://www.alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200167&documentID=434

Research indicates that around 5 per cent of cases of early onset Alzheimer's disease are due to familial forms of the disease. Many young onset cases of familial Alzheimer's disease are linked to mutations in one of the two presenilin genes, named because they result in what used to be called 'presenile' dementia. These genetic mutations run in a very small number of families.

There is also a genetic link with later onset Alzheimer's disease. It is weaker than the link described above, but is not confined to a few families and it is not the result of a mutation. The link is with a protein called apolipoprotein E (ApoE), of which there are four forms. Inheriting ApoE4 from both parents increases the chances of having the disease, but does not make it certain. Some other factor, not yet understood, must also contribute.

It is likely that other genes will be found that contribute to Alzheimer's disease but the degree of risk involved is likely to be small.

Appropriate genetic counselling should be available to those who are considering having a genetic test

The Society campaigns for:

* Proper genetic counselling for individuals and their families who have a clear family history of dementia, particularly early onset dementia that develops before the age of 65
* Advice, support and information at both an early stage and on an ongoing basis
* Guidelines on who should have access to and use of information obtained in a genetic test
* Action to prevent insurers and employers from using genetic information to discriminate against people at risk of dementia in the future.

 

[sad nell]

Sara so sorry you find your self in this position. on a practical note if you did have gene test and it suggested you may be more prone it could effect,obtaining insurance morgage etc ,and it is not certain that it will develope ,I would try to talk my children out of this, we have talked about it and they have both agreed what will be will be and to live life to the full with out worrying, what may or may not happen, every one is different so there is no right or wrong way of handling this, but i agree it would be better to wait a while. love Pam

 

[ulsterbabe]

genetic profiling

Hi Sara, you sitiation is very similar to mine.

I expressed my concern to Dads psychogeriatrician and he referred us to another hosiptal who had a Genes Dept. We attended and they explained that if they took blood from Dad its a long process to find the gene and the test us for it. He explained that it is like looking for a spelling mistake in a book and so can take a while, also once they find the book we would have to undergo intense councilling to make sure that we could dope with the results of the tests.

We decided to go ahead and they took dads blood nearly 4 mths ago now and they are still looking for the faulty gene.

I havent decided yet if i want to kow if i have the gene and neither has my younger brother but my older sister who has 3 young children wants to know.

Spek to you relatives consultant and see if they can help get the ball rolling for you.

I wish you al the best and good luck x

 

[Grannie G]

Dear Sarah

No-one can tell you what to do or not do but I can only tell you how I feel.

If a condition is curable and I felt I might be likely to get it I would have the test.

If a condition is incurable I could see no benefit from having the test.

If a test showed I carried a `dementia` Gene, I would be sitting around waiting for something to happen. I would have no life at all.

If I did not know I was carrying a dementia gene I would live my life in peace.

You are still grieving for your mother. Your grandmother does not have the gene does she? She nursed your mother, her daughter.

Love xx

 

[Brucie]

The problem is that you could have the test, find there was no hereditary link and then still get dementia from some other cause later.

Or, you could find there might be an hereditary link yet never have dementia.

I believe that, because of these conundrums, Fiona Phillips after her recent TV programme had the test, but then didn't ask for the results.

I think it comes down to what route of uncertainty would make you happiest?

• To know you might be susceptible, yet never have it
• To know you might not be susceptible, yet get it

I guess the reason to have the test and the results would be to decide whether or not to have children. If the results were for an hereditary link, then by not having children, you could be sure it wouldn't skip a generation.

Dementia blights lives for all sorts of reasons.

 

[Margarita]

Dementia blights lives for all sorts of reasons

Sorry, but that just sounds like a bold negative statement.


So does Hereditary cancers. Hereditary coronary heart diseases.

 

[citybythesea]

Sara, I think this will probably be one of the hardest decisions you will ever make in your life. Mom had AZ her great-grandmother had dimentia at a late stage in life. There are several relatives peppered thru that part of the family who have or had AZ, that I am finding out about now. That part of the family I did not grow up knowing.

My brother and I were asked to take the genetic test for AZ for a study being done here in the US. My brother is 6 years older than me and is a world apart in attitude than me. We've gone to bars together and been mistaken for a couple. THat's how far our looks are apart from each other and we most definitely have the same father and mother. My sis-in-law is now using the AZ card on my brother. He does something odd, forgets something, you name she uses AZ to explain it and has gone so far as to have a POA drawn up for him. To him it would be beneficial to know...you would think. The tests were done neither of us wished to know, we did it for their purpose. They had my mothers dna along with dna from both her parents. They also retrieved my fathers dna for this study.

It's been 4 months now the results are back in and both my brother and I have yet to decide either. His wife has tried getting the results but wastold she could not have them thanks to HIPPA (for once the government enacted something right).

My kids have asked me if I know the answers and I tell them no...but does it really matter right now? I guess what I'm trying to say is if you really want to know then have the test done. Does not knowing impact your life enough that knowing may change the way you live. Example the way you feel not knowing would you have a child now, but if you knew you did have that trait would it change that decision.

Don't let a disease that took your grandfather and mother make a decision for you because you still carry the genes for your other parent and those genes may be the dominant ones.


HUGS

NAncy

 

[rhallacroz]

HI There
Oh poor you. Look we are all mostly on here because we have close relatives with dementia. But if we look deeper into our family trees we will find cancer, many types, heart disease etc etc.
I am a Midwife and have to offer screening tests for many things, In order that couples who wish to can terminate their unborn. Is this wrong or right. Should we be in the position to change our destiny.
Like someone said earlier you might take the test and then find our it is negative then still get dementia maybe vascular because you have heart disease. I of course understand how you must feel after seeing your mum and granddad go through this. But also would it change the way you live your life. Look in 20 years time we are going to be much further down the line with stem cell research and treatments etc. Why should we live our lives in fear of what we might get we just don;t know what is round the corner and lets face it who would want to know. There are many things we could die of before we get dementia.
Enjoy your life that you have now. Take pleasure in every day. Tomorrow wil take care of itself.
Take care you have endured so much in your short life. Enjoy the years ahead tomorrow may never happen. I am thinking of you and hope that whatever decision you make you get some expert counselling beforehand. Only then will you be in a position to make this very big decision.
Take care
Angela x

 

[Tender Face]

I went through some genetic testing years back because I had such scant biological medical history ..... pregnancy (and my partner's poor medical history) prompted me wanting/needing to know whether I carried a particular gene to enable me to try to plan ahead for my child's needs .....

The results were simply 'probablities and possibilities' ...... no answers, at all really. We still had to face whatever did or did not confront us ......

Sadly, I have since learnt my biological mother has a form of early onset dementia ... if there were a test, would I have it?

For me, no - pre-planning for other dependents (or planned dependents) is one thing - knowing my own destiny another.

Once upon a time I wanted to be as prepared as possible for anything that might lie ahead ... today... I think I prefer not to know ... but then responsibilities have shifted .....

The most upsetting news I saw of late was the father on his way to greet his newborn and his wife, his young child as witness to his stabbing ..... and wonder at how people cope with the unexpected and awful and tragic ...... what earthly good would it have done that family to have had some 'crystal ball' and predict their tragic future?

Carpe Diem!

Love, Karen, x

 

[Margarita]

If a test showed I carried a `dementia` Gene, I would be not sitting around waiting for something to happen, as then I would have no life at all, I would be still living my life to the full.

when my brother got schizophrenia at the age of 22 , then found out years later that schizophrenia is Hereditary there is gene testing, but only found that out when I had my children.

I alway had that worry in the back of my mind , that I could get schizophrenia, to not know never gave me peace of mind, from the age of around 29 .

I know that even if I knew I had that Gene I would of still had my children.

Now my children no there a risk themselves also if they have children . It’s their choice to know,Its there choice not to know , it’s their choice to live the life they want after they are told , but at least they have the choice to give them peace of mind .

 

[Margaret W]

Ignore my comments if they offend, not meant to do so.

There is no easy answer to this dilemma. We all have dead ancestors, we could be pre-disposed to any of the causes of their deaths - in my family there was liver cancer, stomach cancer, bowel cancer, breast cancer (my grandma was diagnosed with it in 1964, lived another 20 years with no treatment and no effects, died aged 96 of "old age"), heart disease, emphysema, etc etc. Many of our ancestors died young by today's standards, who knows whether they would have developed dementia if they had lived long enough.

I suppose if a particular illness is prevalent in your family, it makes sense to check it out to give you choices, but then it is up to the individual to make those choices. I can't comment, never tried it, I just know I have two lovely adult daughters and if they develop heart disease or stomach cancer or whatever in later life, well they will have had plenty of years of good living first. Isn't that all that most of us can expect?

Love to all of you

Margaret