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Another day, another appointment

zeeeb

Registered User
We went to see the geneticist today. Mum had the blood tests to indicate whether the alzheimers is genetic or not. Dr told us that there is not much science behind parkinsons being genetic based, so he wasn't looking at that.

There's a 50% chance of them being able to indicate from the genetic testing that her alzheimers is genetic based.

Interesting appointment, but not a great deal of information that's very practical. Once we get the results, if it is considered to be genetic, me (and my siblings) will have 50% chance of having the alzheimers gene from mum. And all her siblings will also have the same 50% chance of inheriting it from my grandfather.

The only factor that i found useful in deciding to be tested or not, is that if you have the genetic testing, and are proven to have the defective gene, it will affect you in getting life insurance, income protection insurances etc. you are then obliged to pass on the information if you know, and therefore they will either not insure you or charge alot more to insure you, or insure you, with exceptions to alzheimers related stuff. So essentially, if you know that information, you are obliged to tell them. If you don't know the information, you can't tell them. I presume this will have effects in the future on things like health insurance, applying for certain jobs, pretty much anything where they ask you about medical history. Note, I am in Australia, so that may not apply where you are?!*

Essentially he said there is not much point in being tested, as there are no medications that would be useful to someone of my age to take to try and delay alzheimers. But in the future, if something were to become available, it may become worthwhile knowing.

We will await the results, but it won't make much difference to me. I have no intentions of having the genetic testing, i'd much prefer to stick my head in the sand and pretend like it would never happen to me. Quite frankly I'd rather not be judged on things that may happen to me in the future if there are no real medications or treatments that will make much difference. If my life is going to be short (or torturously, painfully long) I'd rather enjoy it for now rather than trying to stave off the inevitable.
 

nicoise

Registered User
Jun 29, 2010
1,806
0
Dear Zeeb,

I'm with you on this one - for me there are more downsides to knowing than not.

As you say, the issue of disclosure, and its effects on perhaps insurance, employment etc is quite a big one.

You know (as I do with my mother having similar problems to yours) that there is a 50% possibility of developing the same problems. But there is also a 50% chance of not. What we do know is that there are lifestyle changes or choices we can make whilst appearing to be in good health that can contribute to a different or better managed outcome, or prevent other diseases.

We know the symptoms, and our families do, so that if there start to be problems they can be addressed earlier. We now know the system - diagnosis, medications, care options, financial and so on - so that can be managed better rather than the trial and error uphill struggle we all have initially when we started our enforced "training course" in dementia, usually from complete ignorance.

I don't believe I have my head in the sand, but sadly I do now have my eyes opened to the possibilities. Oh for the stress-free days of naiive ignorance; but there we are. Carpe diem! ;):)
 

rjm

Registered User
Jun 19, 2012
742
0
Ontario, Canada
Hi Zeeb,

I agree with you on the testing, it really provides no useful knowledge. Even if the results indicate you carry the gene it does not tell you about when or how onset will occur. Best to enjoy each day and use the knowledge and experience you have to handle whatever comes in the future.