If it walks like a duck and talks like a duck, it isn't always a duck.

[Thirties Child]

I visit sporadically and need to give a bit of background before I tell my it's-not-always-a-duck story. Shikar, my 80-year-old husband, is ApoE 3/4. In 2016 his neurologist diagnosed him with Alzheimer's, which I heartily disagreed with. His primary symptom was short-term memory loss and confusion when he was in an unfamiliar situation or surroundings. In 2017 we finally got an appointment with Emory for a full neurological evaluation. Lewy Body Disease based on symptoms, vascular dementia based on an MRI. Lewy, it turns out, caused orthostatic hypotension, which caused multiple small strokes. We got a blow last April when Shikar was diagnosed with non-alcoholic cirrhosis. No symptoms and therefore no worry. No worry until late February when his peritoneal cavity began to swell at the same time that he began to have delusions, e.g., occasionally thinking I wasn't me but someone who pretended to me. It took a month for the truth to register with me. Ascites + delusions = liver.

I came out of this with several realizations. (1) Cirrhosis is horrible. (2) Shikar's 3/4 didn't cause Alzheimer's. He dioesn't have Alzheimer's, (3) Even though he has two forms of dementia--Lewy Body Dementia and Vascular Demetia--neither was caused by his 3/4 status. (4) He has delusions when his ammonia levels are high and cross the Blood Brain Barrier. Which is why I say if it walks like a duck and talks like a duck. it isn't always a duck. All of this gives me hope for our son, who is 3/4.

[NF52]

Dear Thirties Child,

Thank you for pointing out that it takes both a good doctor and a good spouse to figure out what's a duck and what's an incoming asteroid. But I think you left off one important realization: that the love and support of an indefatigable partner, child or friend is one of the greatest gifts we can hope for on our journey. I am sure your husband feels that way.
I hope that having accurate information and the support of the team at Emory is allowing you to feel some relief. As someone who is a Fifties Child, I know that my ApoE 4/4 status is going to be more of an issue for me than for our three 3/4 children. I expect that they, like your son, will have the benefit of decades of sophisticated, personalized strategies to enjoy life. I also hope that my kids have an example as strong as you and your husband offer of how to deal with adversity with grace, grit and hope.

[woleile]

Hello Thirties Child,

I'm responding because my mother has non-alcoholic cirrhosis and ascites. I want to share something that has helped her more than anything her doctors had to offer. It's Jarrow LiverOptimizer. It improves her appetite and energy and reduces her dementia. The difference it makes, for her, is dramatic.

Best wishes to you and your husband.

[SusanJ]

Good to hear from you and also for you for continuing to work on the underlying problems for Shikar. And remember to take care of yourself as you go forward on this journey! Sending hugs, Thirties Child, and a little extra energy to you.

[Lucy5]

Hi woleile and welcome to our community!

As a new member, if you haven't had a chance to browse through our site Primer written by a member practicing physician, we highly recommend it as a great place to start. Our Wiki has additional information you may find helpful and we also have a Search function found along the top of this page (magnifying glass icon) that can be very useful for deep dives into our forums.

woleille, please feel free to ask questions as they come up. There's a lot of hard-won knowledge here and we all continue to learn a great deal from each other. Also, if at any point you'd like to share more about yourself, the Our Stories forum found here is a great place to post.

In the meantime, looking forward to seeing more of you on the forums!
warmly, Lucy

[Sara]

Hi Thirties Child,

Thank you for sharing your story and what an interesting post! You are to be commended for following your intuition and pursuing answers when the existing situation didn’t make sense to you. I didn’t catch how your husband is doing today but I wanted to share with you that I have been working with a client diagnosed with Lewy Body Dementia who has made a dramatic turnaround... following the Bredesen Protocol. Warm Regard!

[woleile]

Hi woleile and welcome to our community!

As a new member, if you haven't had a chance to browse through our site Primer written by a member practicing physician, we highly recommend it as a great place to start. Our Wiki has additional information you may find helpful and we also have a Search function found along the top of this page (magnifying glass icon) that can be very useful for deep dives into our forums.

woleille, please feel free to ask questions as they come up. There's a lot of hard-won knowledge here and we all continue to learn a great deal from each other. Also, if at any point you'd like to share more about yourself, the Our Stories forum found here is a great place to post.

In the meantime, looking forward to seeing more of you on the forums!
warmly, Lucy

Thanks, Lucy5.

I had read the primer and some of the Wiki. I just went back to the Wiki and discovered that my homozygous MTHFR compounds the AD risk from my homozygous APOE4. Not sure how much more I want to read...!