Walking Hand in Hand with Alzheimer's

[Elevation]

Dear Friends,

I have been walking hand-in-hand with Alzheimer's for most of my life without realizing its significance. My mother died just over a year ago after suffering for approximately 15 years. Just prior to her death, she was diagnosed with Lewy Body Dementia, Alzheimer's, and Alcohol Related Frontal Lobe Dementia. She was not ambulatory, was incontinent and was morbidly obese. I wanted to fix all of this. I used all the resources and skills I learned while managing an Adult Day Care Center, in my early years, to help her. She refused help, became verbally abusive and most Doctor's and nursing homes refused to care for her. So...about 1.5 years ago I told a doctor that I was depressed and struggling. She did a blood test that gave me the info that I was APOE 4/4 and MTHFR. This Doctor did not know what that meant.

I found you all. I struggle with digesting all your great information and I struggle with moving on. I am a caregiver for my husband who suffered a massive stroke 19 years ago. He was very sick this past Summer with one ailment after another including two difficult surgeries. I remembered my Grandfather committed suicide at his diagnosis of Alzheimer's. I was struggling with it all. From your site, I became involved with a beautiful angel coach whom helped me to put some pieces together and to give me focus. I was also a member of Dr. Dewitt's program and found him to be informative, caring, lovable and supportive. I am hopeful but still struggle.

I am attempting to find a APOE 4/4 aware Doc. I did make and follow through with 2 appointments with a Functional Medicine Doctor. He only cared about my money and not about me. He says he knew about that "APOE thing". He said I needed to sign up for his $3000 program right away because I was a Cancer Survivor. ( I have NEVER had cancer.) My PCP says he sees no need for blood work I am requesting because he thinks I am very healthy. He will address numbers he is watching with pharmaceutical drugs when he sees merit. I am on a quest to find an APOE 4/4 aware Doctor.

I am a 62 YO F without symptoms. I became involved with the Generations Research about a year ago. I volunteer at a Marine Research Lab and teach children about marine invertebrates and marine mammals. I hear great lectures about latest research. I bike, hike, swim, play tennis, play pickleball, and travel with friends. I am lucky to enjoy Florida Winters on the Beach and Colorado Summers in the Mountains. I hope to be part of the resolution to Alzheimer's Disease and End of Life Care. I hope to fight, to learn, and to win. I am afraid.

[NF52]

Dear Friends,
I have been walking hand-in-hand with Alzheimer's for most of my life without realizing its significance...
I found you all... From your site, I became involved with a beautiful angel coach whom helped me to put some pieces together and to give me focus. I was also a member of Dr. Dewitt's program and found him to be informative, caring, lovable and supportive. I am hopeful but still struggle...I am on a quest to find an APOE 4/4 aware Doctor.

I am a 62 YO F without symptoms. I became involved with the Generations Research about a year ago. I volunteer at a Marine Research Lab and teach children about marine invertebrates and marine mammals. I hear great lectures about latest research. I bike, hike, swim, play tennis, play pickleball, and travel with friends. I am lucky to enjoy Florida Winters on the Beach and Colorado Summers in the Mountains. I hope to be part of the resolution to Alzheimer's Disease and End of Life Care. I hope to fight, to learn, and to win. I am afraid.

Welcome, Elevation!

Your inspiring name, referring perhaps to your Colorado summers but almost certainly to your spirit, suggests that you carry within you wonderful strengths of perseverance, courage, empathy, forgiveness, self-awareness and love. And, I suspect, the enduring capacity to see beauty and joy in everyday moments. I just finished reading Mary Pipher's Women Rowing North: Navigating Life’s Currents and Flourishing As We Age She is a therapist who has spent her career working with and writing about how girls and women overcome trauma, but this book does something else: uses the stories of many women to talk about how we handle the myriad and inevitable challenges of age while recognizing that is can be a time when we are most-self aware, most able to move past old traumas, most able to embrace the deep joy of friendships with other women (and men) and most able to share our gifts with others, as you are doing. I think you would find much that would resonate with your experiences and some ideas for how to find within you the ability to "keep rowing".

As a 66 year old 4/4, I am in the Generations 1 study on the CNP 520 BACE1 inhibitor or a placebo. Did your involvement with Generations lead you to join the study, or did the needs of your spouse make that impractical. (I do know of someone who is in the study with a circle of close friends who serve as her "study partner" on a collaborative basis.)

Your choices of exercise, social connections, giving back to others (especially at a marine research facility--my kids' idea of heaven for many years-- is exactly what much research says will extend your cognitive health for years. Since you have no concerns right now, is it possible that you could use some online blood lab services to get the specific markers tested that you're are interested in, and then just use this site, your coach and others to guide your decision-making? I know that the health coaches on our wiki, and our current group of health coach interns, continue to amaze me with the breadth and depth of their knowledge and their ability to make connections to support people in any phase of the journey to feeling empowered, supported and even joyful.

Finally, having spent most of my career in the Pre-K to 21 special education field, often coordinating with Adult Day Care providers for individuals with intellectual and emotional disabilities, autism spectrum disorders and traumatic brain injuries, I want to thank you for what was probably pioneering work in your local area. I hope you are able to stay connected with some of your peers from that time. Some of the best doctors I ever met were family practitioners who worked with those with special needs along with their regular patients. If you know of any of those kinds of doctors, it might be worth talking to them not as a colleague but as a potential patient. For myself, having moved to a new state, I didn't find an ApoE 4-aware doctor; I just found a doctor who listens extraordinarily well, who takes 30-40 minutes if needed to discuss options, who talks about how fascinating all the unanswered questions are, and who helps me to get done what I want in the least expensive way.

Hugs from a 4/4 older sister.

[CoachJD]

Welcome, Elevation! I echo NF52 sentiments about your strength and optimism, which are so important to resiliency and health and I want to add that I'm impressed with your intelligence and critical facilities, especially as it regards finding and working with an ApoE4 physician. If you are interested in getting baseline tests done and evaluated by a trained physician, then you might consider registering with AHNP Health for their RECODE or REVERSE programs. These programs recommend specific tests used for evaluation, and give you access to a provider database of Bredesen trained physicians.

Our community is here to support you in so many ways, so I hope you'll post often about your journey and ask for whatever help we can offer!