To test, or not to test?

A primer for newbies and old pros alike.
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Trish
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To test, or not to test?

Post by Trish »

In advance, I've read through both the Primer and the page on here about things to consider before genetic testing. I think I need more person-specific advice.

Here's my situation. I'm a 24 y/o Female with two cognitively intact parents (60s), two deceased grandfathers, and one very healthy 89 year old grandmother. My maternal grandfather passed away in a fire; my paternal grandfather passed away from cancer. He showed some mild cognitive impairment before his passing, but this was attributed to the years and years of chemotherapy. Now, my paternal grandmother is starting to show some signs of dementia, alongside severe depression. It's unclear if she has vascular dementia or another type of dementia (possibly AD, although her Drs have not been inclined to diagnose that). She does have congestive heart failure as well, which leads to the suggestion of VD.

For some reason, since her medical symptoms have intensified and her cognition seems to have taken a turn for the worse, I've become truly obsessed with the possibility that I could have inherited an APOE4 gene. I can't be a good granddaughter because I'm so scared of this. I've been having trouble eating, sleeping, or functioning in my life because of my own fear of this. I'm 24 years old, relatively healthy, happily married. Why am I like this?

As a side note, I have had a fairly long history of generalized anxiety, often health-related. I can't figure out what is going to help me here - knowing and being able to take action, or not knowing and having a meltdown?

Another side note - in my kind of obsessive mindset recently, I've read through a lot of this forum. What a wonderfully supportive community full of excellent thinkers. Thanks in advance.
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Julie G
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Re: To test, or not to test?

Post by Julie G »

(((Trish))) Deep breath, my friend. First, I'm so sorry to hear that your grandmother is showing symptoms of cognitive decline. It's understandable that you would wonder if her presentation has a genetic component. My guess, based upon the information you've shared, is that you probably don't need to test your APOE status for now. Having read our primer, you've already got the information you need to begin working on prevention. The vast majority of those strategies apply to everyone. Without becoming obsessed (it's often a fine line!) working early to preserve cognitive health is very wise as the underlying pathology takes decades to develop. Best wishes to you and your grandmother. You might even consider encouraging her to adopt some healthy lifestyle changes by serving as a role model. -xo
Trish
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Re: To test, or not to test?

Post by Trish »

Thanks Julie. Even with your kind words, I can't seem to get this out of my head. I feel like I won't be able to calm down or commit to a healthy lifestyle if I don't know. I really want to be supportive to my grandmother as she goes through this, but I can't shake this thought and it's really bugging me out.
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Julie G
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Re: To test, or not to test?

Post by Julie G »

Thanks Julie. Even with your kind words, I can't seem to get this out of my head. I feel like I won't be able to calm down or commit to a healthy lifestyle if I don't know. I really want to be supportive to my grandmother as she goes through this, but I can't shake this thought and it's really bugging me out.
It's a tough decision, Trish. I've found my 4/4 status to be VERY motivating. I doubt I'd have made all of the lifestyle changes I have without that driving force. That said, I worry about your anxiety. If you were to learn you had an E4 allele (or two) would that worsen things? Or, would the knowing allay your concerns? Think carefully. I have faith that you'll make the best decision for you and we'll be here to support you no matter what the result. -xo
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fxmedcoach
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Re: To test, or not to test?

Post by fxmedcoach »

Trish, it can be overwhelming to watch someone we love go through a tough health challenge such as dementia, or cancer. Your curiosity has already lead you to a wealth of information in the Primer and the information about genetic testing. It seems even with this information your anxieties are not put at ease. Something to consider dementia or ApoE4 aside, are you interested in making healthy lifestyle changes (diet, good sleep routine, remove toxins, exercise, etc) in your life? These healthy lifestyle changes could potentially help to address your challenges with anxiety and maybe in the future put you in a place where you could decide if testing would be something you're interested in. Something else to keep in mind that might help to ease your fears, just because we have a gene (even ApoE4) doesn't mean that gene will "express" itself. Our environment determines whether this happens or not. Those lifestyle change areas I mentioned are several areas of our environment we have control over and can make changes in to keep a gene that could lead to a health challenge we don't want to deal with.

Kelly Brogan is a great resource for women with depression and/or anxiety. She has a great book -- A Mind of Your Own. She has lot of information on her website as well -- https://kellybroganmd.com/. Dr. Jolene Brighten also has a good article you might find interesting -- https://drbrighten.com/healing-anxiety- ... -medicine/.

Hopefully, from the comments to your post you will be able to make a decision about what is the best way forward for you.
Deborrah Cisneros
RN, FMCHC, NBC-HC, CGP
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