Hello

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
TheKid
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Hello

Post by TheKid »

Hello! My name is Leslee but am going by TheKid since it's what my mom calls me... or, should I say use to call me? Anyway, in the last two weeks I have discovered I am APOE4 positive, 1 variant. The one variant is my mom who is now in her 9th year of vascular dementia and Alzheimer's Disease(end stage dementia and on hospice care at home for COPD/Emphysema). I have been caring for her full-time in my (our) home since her diagnosis November 2009. So, am face to face with Alzheimer's intimately every day, as I'm sure many of you are too. I am currently not experiencing any type of decline in cognition of my own.

When I learned of my status, I wasn't shocked. My mom, her sister and their mom all had or currently have Alzheimer's. As with any "bad news" I was a bit sick to my tummy for a couple of days, but that soon turned to empowerment in my mind. I mean, knowledge is power, right? I sure hope so... My dear husband who has never waivered in his support of caring for my mom did what he does. He sent me a youtube link of Dr Gundry (Plant Paradox author) interviewing Dr. Bredesen (End of Alzheimer's). I watched the video and promptly ordered the book. Fascinating. I think what I appreciate most is his ability to think outside the proverbial Alzheimer's box to come up with a protocol to reverse cognitive decline. I truly admire brilliance, in all its beautiful forms.

Anyway, I'm here to learn, contribute and support my future friends in this journey.

Thank you for reading.
Last edited by TheKid on Thu Feb 08, 2018 6:54 pm, edited 1 time in total.
chrissyr
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Re: Hello

Post by chrissyr »

Welcome Leslee! I understand your pain and the loss that you have already had with your mom. My mom also has dementia : diagnosed at age 74 after a few years of MCI. (maybe a combination of AD and vascular dementia) as did her mom. I also have 1 variant. However my mom lives in assisted living; I am able to see her twice per week or so. I very much admire your commitment and the sacrifices that must have meant for you. Not easy!! Not possible for many families.

I have noted that this is a kind, smart and humorous group of people (maybe it's in the genes) There is much to read and learn here little by little. And as you said, supporting future friends. We welcome your contributions and thoughts.
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Tincup
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Re: Hello

Post by Tincup »

Welcome Leslee!

You may want to read our primer. Here is a glossary for it.

I happen to be a Gundry patient (as is my 4/4 wife) and this link has links to transcripts with all our consults as well as lab results. As well how we integrate his suggestions with Dr. Bredesen's approach.

A lot of topics are addressed in our Wiki.

If you click on the three vertical dots in the upper right, you will find our search function.
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ccfield
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Re: Hello

Post by ccfield »

Hi Leslee and Welcome!

I love what you said: "...but that soon turned to empowerment in my mind. I mean, knowledge is power, right? " Yes, it is (!) and you've come to the right place for that. Tincup gave you the best information about where to start, with the Primer and the Wiki. The Primer was written by physician member Stavia and it is loaded with great information and the Wiki and Search (accessed via the three vertical dots at the top of the page) are invaluable.

This is an amazing community for discussion and for keeping up on the latest. Glad you are here.

- Carrie
- Carrie B
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TheKid
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Re: Hello

Post by TheKid »

Thank you all for the warm welcome! And, suggestions of where to begin. I feel like I may be a lurker for a while since my concentration must be my mom during her final journey. I have begun some small changes in my life but will concentrate more on me once my caregiver days are behind me... My mom is now 18 months on hospice and needs me more than ever. I am very grateful I have been able to care for her during her disease. It's an experience that I will always carry with me.
Liko
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Re: Hello

Post by Liko »

Hi TheKid, welcome!

It's a-ok to be a lurker :) We have many members who observe quietly and join the conversation when/if they are able and feel comfortable doing so.

Caregiving is no easy task and you've carried that responsibility for a long time. It's nice that you have attitude of gratitude about being there for your mom. Know that gratitude itself is good for your health!

I wish you and your mom a peaceful journey and that you'll be able to find time for rest and self care along the way. Please come back any time for support.
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slacker
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Re: Hello

Post by slacker »

TheKid wrote: I feel like I may be a lurker for a while since my concentration must be my mom during her final journey.
chrissyr wrote:My mom also has dementia : diagnosed at age 74 after a few years of MCI.

Hi TheKid and chrissyr;

In your "spare time", you may want to check out this wonderful thread on caregiving. It's an amazing resource.
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Re: Hello

Post by Searcher »

TheKid wrote:I am very grateful I have been able to care for her during her disease. It's an experience that I will always carry with me.
TheKid, you moved and inspired me. Sometimes we get pre-occupied with molecules, and they can be helpful. But the real elixir of human life is love, which tends to make every darkness bright. Thank you.
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Jan
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Re: Hello

Post by Jan »

TheKid wrote:Thank you all for the warm welcome! And, suggestions of where to begin. I feel like I may be a lurker for a while since my concentration must be my mom during her final journey. I have begun some small changes in my life but will concentrate more on me once my caregiver days are behind me... My mom is now 18 months on hospice and needs me more than ever. I am very grateful I have been able to care for her during her disease. It's an experience that I will always carry with me.
I wanted to add my welcome, and say that I'm also inspired by your choices. Check in as you can, and know that we'll keep the light on for you whenever you need some support, or just a few sentences of interaction.
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TheKid
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Re: Hello

Post by TheKid »

Thank you! It's been a long journey with my mom but it's been one full of love, joy and a lot of laughs. Of course we have had "moments" in this journey but we have had many more good days than bad. In her final stage and she's still witty, funny and able to read. She may not understand what she's reading but she can still read.... Her medical people tell me it's the way I care for her that she has done so well. Maybe... I hope it's partly because of me, but she's her own person... I just guide her and try to bring out her best.
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