New here? Some Best Practices

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Nancy
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Re: New here? Some Best Practices

Post by Nancy »

This was very helpful. Simplified things a lot. Thank you.
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dgnvb
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Re: New here? Some Best Practices

Post by dgnvb »

Hi,
I am new to this site, but have known my APOE3/APOE4 status for a few years. Testing was done through 23andMe and I then ran my data through Promethease. Is my designation heterozygous APOE? My mother had Dementia/Alzheimers and was prescribed Aricept.
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Stavia
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Re: New here? Some Best Practices

Post by Stavia »

Welcome Dgnvd. Settle in and ask any questions.
Hope you find our discussions useful.
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Tincup
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Re: New here? Some Best Practices

Post by Tincup »

dgnvb wrote:I am new to this site, but have known my APOE3/APOE4 status for a few years. Is my designation heterozygous APOE?
Dgnvb,

Welcome. Yes, E3/E4 is hetrozygous. 4/4 is homozygous.
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Nancy
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Re: New here? Some Best Practices

Post by Nancy »

Welcome! You've come to the right place! There is so much good and valuable information here that has been shown to prevent AD. Have you read through Stavia's Primer yet? The "Getting Started" thread is where you will find it.
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barb
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Re: New here? Some Best Practices

Post by barb »

I could use some help. My homocysteine is 10 and glucose 103. I have gotten the Bredensen summary and wonder how I can find out if I have the MTHF mutation. I did 23andme to get the apoe4 information which was difficult since they do not provide it anymore. Would the promethease tell me? I could just take the three named I guess and take my chances.

Thank you all for this site - nice to have company!
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KatieS
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Re: New here? Some Best Practices

Post by KatieS »

Barb, the free transfer between Genetic Genie and 23andme will give you a summary of SNPs that might increase your Hcy and whether you are homozygous for MTHFR.
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Re: New here? Some Best Practices

Post by Bettylacy »

I am so excited to have a science oriented online site along with sharing of personal experience and accompanying emotions for addressing Apoe 4 concerns.
I am a heterozygous 63 yr old psychiatrist who has been on a mission to understand the Apoe gene and implications there of for the past 2+ years, since my family and I were tested. I'm relieved to know you have 800 members that I can now begin to communicate with about this genetic susceptibility to Alzheimers disesase, one of the most cruelest diseases IMO.

My mother was diagnosed 3+ years ago after 5 years of MCI. She was scheduled to attend the Bredesen program thru Bucks Institute but had to pull out because of progression in her memory impairment and uncertainty as to how to implement the program at her Assisted Living facility. I have done a fair amount of research on APOE have had my mother on much of the MEND program. I live in Northern California in a small town about 2 hours north of SF. We just moved my mother here to a board and care facility with 5 other women, all in various stages of dementia. It is 5 minutes from my house. I have managed most of my mother's care after discontinuing with her neurologist at Kaiser, who told me there wasn't any hope for my her. When I talked with the neurologist about programs available including dietary interventions and supplements etc...she told me I was "grasping at straws". I was so angry! I filed a grievance, the first one I have ever filed, and went into research mode. Over the past 3 years I began Citicholine, Estrogen, probiotics, melatonin, Co Q 10, Vitamin B12 and Bcomplex. She failed trials of nicotine patch, namenda, MCT oil, coconut oil, high doses of Vitamin E and eventually followed with intranasal insulin, checking her her HgAIC, which gradually went up to 5.9, and kaiser seemed to not want to treat. I tried as best we could do put in place diabetic diet and increase in exercise. I tried to get a homocysteine level but this was not part to the protocal so they never did. It was quite a journey these past 3-4 years. THen in October Mom had a stroke (L Occipital) that left her with a Right visual field deficit, deteriorating mental status, problems reading, increasing word finding difficulty and a problem with wandering looking for people that weren't in this reality. I rushed down to be with her in Southern California and stayed for 8 days. Luckily no physical limitations from the stroke, other than the visual deficit. On the day I was to return to Northern California, I was informed by the Assisted Living home that that they could no longer care for her. I still can't believe that we succeeded in finding a home in our small town and managed to get my mom here with help of family. Currently Mom seems to be adjusting. No real treatment for the stroke other than ASA and a statin, both of which I declined since Mom is allergic to ASA and a statin feels moot at 88. A new neurologist, recommended we stop the Exelon patch she has been on for 7 years, and several of her other meds so I did. She is now off the intranasal insulin, Estradiol, and Citocholine. I've had mixed feelings about stopping the meds but after 3 months I haven't noticed that much difference. I'm not sure what I do next other than continue to "Be" with her providing supportive, structured and stimulating activites, . I'm trying to educate the staff at the board and care around diet, exercise and structure. The majority of residents are sitting in lazy boy chairs with the TV on and seem pretty happy, but Mom still is in moderate stages and requires more hands on and structure.

I know this is much about my Mom and not me, but besides getting Mom settled , plugged into activities, running my psychiatry practice and taking care of myself, this has been my life over the last 3 months.

More about me: I grew up in Southern California and as a young girl I remember my mother's mom, "tiny nana", moving in with us when I was about 9, because of memory impairment, then called senility and later senile dementia. Suffice to say, the labeling of memory impairment as senility by the medical profession, led to a long held delusion for decades, that cognitive decline was part of the normal spectrum of aging. The mind set then and sometimes still is , "there is nothing to do". Coupled with the myopic pharmaceutical platform based on the amyloid hypothesis, and lack of research into metabolic and integrated possibilities, we have had major set backs in the field of AD that continue to pervade. THe AMA not recommending APOE testing, other than for cardiac reasons, continues to forestall dessimination of information about AD, genetics and epigenetic influences and further research possibilities.
Nevertheless here we are, and once again I reiterate how lucky I feel to be part to this on line forum, since I'm pretty much living in a vacuum around this topic.

Back to my story: Much later after my grandmother died, I found out that my mother's grandmother used to wander the streets of Albuquerque, looking for her home. I knew AD ran in my family but the seriousness did not hit me until my maternal uncle was diagnosed with AD and then my mother 3 years ago, and a paternal cousin. I flew into reading and educating myself about genetic links, APOE etc. I follow Science Daily, Medscape, Bucks Institute website, webinars, Ginger Campbell's Brain Science Podcast, Alzform and read personal accounts caring for persons with AD. Out of this I have become committed to educating other's about AD and what one can influence regarding epigenetic phenomena and MEND. Through this information, I have put together a Brain Health Program, focusing on prevention of cognitive decline. I do a history ,ROS, brief physical, MOCA, MMSE, extensive blood testing using a program called Boston Heart, that provides APOE, MTHFR, Inflamatory markers CRP, Ferritin, homocysteine, lipid with Lp(a) density and HDL mapping, metabolic, thyroid, vit b12, d3, adoponectin, APOA and B, saturated fatty acid panel, hormones, thyroid and metabolics including HgbA1c, FBS, GSP and more... Boston Heart has created a client friendly book with the results for the clients that facilitates teaching. Since I live in a small town, word has gotten out and I already have a waiting list, because I spend the needed time to explain how at age 50-60 our bodies and brains change and need to be attended to in a mindful integrated way looking at the body and brain not as separate organs but ones that inform and influence one another. Equally I stress the importance of exercise, meditation, spirituality and mindfulness practices to deal with stress and fear based thinking. I am teaching what I am learning to clients and applying it likewise to myself, my mother, family and friends. Overall this feels important and integrated on many levels. I'm inspired by your stories and look forward to participating on a regular basis.

When i am not researching, I am doing something creative with textiles, playing the ukulele, gardening swimming or enjoying nice long walks or hikes in our hills.
APOe 3/4; If you want to go fast go alone. If you want to go far go together. African proverb. :D
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Julie G
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Re: New here? Some Best Practices

Post by Julie G »

Your patients are blessed to benefit from your personal experience, research, and willingness to teach epigenetic strategies! Have you considered officially training through IFM to offer Dr. Bredesen's protocol. You'd be a terrific asset to his team, Betty.

How wonderful that you've found a small care facility for your Mom. I know how difficult it can be to try to implement the strategies we practice when folks are in institutional care. My grandmother and uncle are both in a nearby memory care facility and it's very disheartening for me to see the quality of the diet they are served. I also struggle to get the simplest of tests (like a homocysteine level) done via their PCPs. Both see their physician's every four months so my goal is to tackle one biomarker per visit. Using this strategy, I've gotten them on fairly good regimens over time.

I look forward to spending time with you in LA and am so grateful that you made us aware of the Dynamic Brain Conference.
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Re: New here? Some Best Practices

Post by Bettylacy »

Julie ...can you tell me more about the training thru IFM for Dr Bredesen's protocol?

I have met many caregivers over the years dealing the AD. Many have been open to me when I talk with them about epigenetic factors. THey want more information but don't know where to start. It is important to include them in the new understandings and research in AD. Many believe that there is nothing to do, other than make people happy and comfortable. They are surprised to hear there are simple solutions that can improve memory.

It will be great to spend time with you in LA. Hoping more will come. I might be able to arrange another meeting somewhere in US. THanks for your communication and continuing to manage this most important site.
APOe 3/4; If you want to go fast go alone. If you want to go far go together. African proverb. :D
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