Partner with early signs of dementia & APOE 4 breaking up with me

Have any of you investigated the Bredesen Protocol which takes a functional Precision medical approach to this diagnosis? I've listened to many interviews with Dr. Dale Bredesen and Dr. Heather Sandison about their success in reversing some cognition decline in patients. Our neurologist and his team are pushing this intravenous drug protocol which they say takes 18 months and possibly gives you 6 more months of cognition without any precise instructions for lifestyle, dietary, supplemental or alternative therapy change. Just take this drug and hope for the best. Well, that doesn't sit well with me if they aren't looking for the source of the amyloid plaque formation. We have an appointment with a Bredesen Protocol doctor in Vienna, VA, this coming week and I am anxious to hear their assessment, diagnosis and continuous plan for my husband and our family.

@shmerdloff
Did he try removing the amaloid plaque
2 choices with infusions
Laquembi and Kasula
The first is 18 months every other week
The second is stronger only 9 months
Not all Neurologists know how to prescribe this.
Good luck
Joyce

@edsutton Hi Ed, thank you for your note. I’m not sure if you were suggesting a particular book to me? I don’t see it on my view of the messages, but I would welcome any book recommendations. Thank you for your well wishes.

@flylgw I just bought Heather Sandison’s book. We have been following Dr. Bredesen’s work as well, as you said, for the lifestyle changes.

I am working on changes in my own life, for instance, getting hearing aids, food choices, etc. I’m ordering a glucose monitor for myself.

I hope you have a helpful experience at the appointment next week! I’ll be interested in hearing about your takeaways.

@a23studio
For some reason when I click on Reply the Mayo site erases the link.
The book is _Herself to the End_ by Fran Volkmann.
Do a web search and you'll get many reviews.

@flylgw Please share how your appointment goes with us here.

It’s been a week since my boyfriend shared that he needs to do this health exploration alone. He visited yesterday and left this morning. We had a beautiful goodbye. We talked about how grateful we are to have found each other and how we will always be connected whether we are in each other’s lives or not. We cried, played golf, did some house tasks and cried some more. He shared something he read: yesterday is history, tomorrow is a mystery, is a gift and that’s why it’s called the present. We talked about how we are gifts to each other.

He knows I would take care of him if it came to that but he doesn’t want that. He doesn’t know what’s going to happen and he says he doesn’t know what he’s doing. He had a very positive experience with a Doctor Who agreed to order the labs he’s looking for and to refer to a neurologist.

He knows I’m very health oriented, and that I’m wired to be dialed in and nurturing. He doesn’t want me to lose my life plus it can make him feel crowded. That is a beautiful and honest share. He wondered if he was being selfish. I don’t think he’s being selfish at all, I think the most important thing he can do right now is to do what he needs in this uncertain time.

Nurturing energy does not always give people the space they need and that’s something that I’ve been working on. His feedback was helpful for me to get the next level of balancing love for people while staying on my yoga mat. This is a lesson for me to focus on myself regardless of what happens with us. It is a gift.

Thank you for listening. I do not have anyone that I have disclosed to. I did share with my close friend that my boyfriend and I are breaking up for private reasons, that I can’t share right now. I’m glad that I have her support, and I’m glad that I have this space to put some thoughts down.

@a23studio
😪🫂 your words are beautiful and so real. Maybe have him sign on to MayoChat for encouragement and information. As you need us, stay with us too. (don't disclose your chat name to each other). Everyone here knows grief. Yours is your own. Here's to your future joy.🥂

Wow that really makes me reflect on whether it’s possible to balance my nurturing caregiving tendencies with my partner if it came to that. It would be so important to have other people involved because I wouldn’t want to lose my identity in 24/7 caregiving. At the same time, collaboration can be messy! I feel like I’d want a mediator to give us all parameters and that everyone would listen to them. Not sure all geriatric care managers have the knack for that. I hope to develop in my CG coaching. (I’m a practitioner but here because both of my partner’s parents have Alzheimer’s.) Thank you for sharing this, your description of your goodbye day is really poignant. It sounds like you both have good friends, like it won’t be lonely for either of you, I pray. I’m happy to have found this space where this open sharing is possible.

@1995victoria There are many areas in the brain. Some control movements. Others control learning ability and yet others control emotions. In brain degeneration, areas may be affected differently. Thus, some people can walk for miles but would keep getting lost while others become argumentative and even aggressive while others become sweet and docile. Just remember your friend is not the person you remember. Wait a while and try to visit another time.