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No signs (I don't think) but had father and grandmother die with the disease

Hello- I'm new to this forum. Today's paper had a very interesting article about the new testing which is becoming available for early onset of the disease. I'm 57, healthy and I eat properly and exercise 5-6 times weekly. I'm retired so I don't have the "stresses" of a job. I recall my dad being concerned about not working and it's potential effect on his cognitive ability... and he was correct. However, he was in his 80s when it became severe (not knowing people). We had many years where he was somewhat forgetful. My grandmother was in her late 60s I think when her's became pronounced. This was in the 1970s and 80s when little was known about the disease.
I have an upcoming annual physical and I wanted to talk with my GP about potential tests I can have to determine if I carry the marker or have any signs of it being in my genes. Do any of you have suggestions of testing which is available for someone who isn't necessarily showing signs but feels confident it will likely occur? BTW, I look more like my grandmother and father than anyone on my mother's side. This leads me to believe my health will likely follow my fathers/grandmothers lineage.
Thank you and I look forward to sharing information.

Comments

  • Denise1847
    Denise1847 Member Posts: 863
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    This site was recommended by a physician:

    www.empowerdxlab.com

  • concerned_sister
    concerned_sister Member Posts: 425
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    In my experience it's more complicated than that. My brother has had a PET scan, MRI, and EEG all suggestive of Alzheimer's. He does not have APOE4.

  • M1
    M1 Member Posts: 6,788
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    welcome to the forum. Look on the "I am a Caregiver" page for a thread called Ptau217—that's the new test you're reading about this week. But: it has NOT yet been shown to be diagnostic for screening people without symptoms, which is how you describe yourself—so it won't help in your situation.

  • Iris L.
    Iris L. Member Posts: 4,478
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    My suggestion is to continue your healthful lifestyle, which we call Best Practices. Read about brain health. Then prepare your legal and financial affairs. Decide where you want to live, if you want to move elsewhere. Then you will be prepared for whatever comes. ALL of us are at risk for one of the dementias, because no one knows the precise cause and advancing age is a major risk factor, and we are all getting older.

    Iris

  • SDianeL
    SDianeL Member Posts: 1,040
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    ditto what Iris L. said. There is no cure. Do all you can for brain and body health and live your life to the fullest! My husband had symptoms for about 5 years before diagnosis. We traveled in a RV and enjoyed every mile. Had we known he would be diagnosed in 2021 he (we) would not have enjoyed the last 5 years. He’s been in memory care for 6 months because of my cancer diagnosis. He’s 79 I’m 76.

  • Denise1847
    Denise1847 Member Posts: 863
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    I am sorry to hear about your brother. Your post gives me hope for my son as I am worried about him developing Alzheimer's since his dad has it and is APOE4/APOE4. Would you be willing to share any thoughts about your brother's lifestyle or what you might think could have contributed to this terrible diagnosis? My son eats healthy and exercises etc.

  • concerned_sister
    concerned_sister Member Posts: 425
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    Denise1847,

    I had just typed out a bunch of paragraphs on my brother and his characteristics, but re-reading it all, it wasn't on point to your question. He was always a high performer in many ways. If I were to think of Risk factors vs "Healthy" factors here are some:

    Risk:

    Possible miniscule risk, but working on nuclear submarine. Aside from factoring a small radiation risk, the lack of fulfilling socialization could have been a risk, drinking during R&R, and developing a chewing tobacco habit would seem to be risks. Those were all going on 40 years ago.

    Weight management, could be looked at as a factor. He was able to drop about 35 pounds in recent years and get back down to his weight in his navy days. He was started on a certain medication as being pre-diabetic.

    Healthy:

    In the field of use it or lose it he's always been one to challenge himself with jobs around the house as well as his private sideline of being a PC geek. He had always been a reader, with Dean Koontz being a favorite author.

    He's generally eaten healthy, with a good variety of fruits and veggies etc, though extra servings probably contributed to the weight.

    When he got married in the early 2000's he gave up the chewing tobacco, and the family got a dog which started him walking on a regular basis for exercise and sociallization with the other dog walkers in the community. He cut back to only occasional beers, and even gave those up a little more than 5 years ago.

    He once asked, "What did I do wrong? It wasn't like I was doing heroin or other drugs."

    You don't know. Maybe it's one of those things you don't see coming, but you deal with the best you can?

  • Iris L.
    Iris L. Member Posts: 4,478
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    After I reread your original post, I don't recommend routine genetic testing, because it is not predictive, except for one gene for Early Onset that I can't remember the name of. Age 57? Enjoy your life and do your Bucket List activities now!

    Iris

  • Denise1847
    Denise1847 Member Posts: 863
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    Thank you so much for sharing. I think this is the worse disease of all to rob a person of their personhood and dignity. I just wish they could learn more.

  • concerned_sister
    concerned_sister Member Posts: 425
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    Anosognosia is often mentioned, and it's frustrating to deal with from the caregiver perspective. I often wonder if it's a blessing in disguise for the PWD.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more