New! 37F apoe3/4 in NYC, Mom (71, apoe3/4) is Pending Alzheimer's Dx

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
User avatar
DistinguishedHeathen
Contributor
Contributor
Posts: 32
Joined: Fri Sep 25, 2020 11:40 am
Location: Sunnyside, Queens, NY
Contact:

Re: New! 37F apoe3/4 in NYC, Mom (71, apoe3/4) is Pending Alzheimer's Dx

Post by DistinguishedHeathen »

SusanJ wrote:Most of us here have faced helping a loved one battling dementia. It's a tough and exhausting place to be. Remember that you are doing your best to support your mom, and all caregivers out there will admit to having bad days and imperfect solutions.
DistinguishedHeathen wrote:My mom, for all her flaws, is a wonderful human being who I cherish in too many ways to count, and watching her slip like this and feeling like I'm holding this terrible secret of knowing something she doesn't is pure torture.
You might want to think of it as an act of kindness on your part to keep that "secret" from her. Sometimes the broken brain can't make sense of even the most logical explanations, and hearing "bad" things can be devastating when the ability to process (and remember) information is faulty. It might not be denial on her part, she might just not remember that anyone in the family had dementia, and the word dementia instead evokes a strong emotion that she cannot connect to family history.
DistinguishedHeathen wrote:My God, I've had an unusually hard/tragic life as far as personal tragedies and a wildly abusive childhood w/my father and then ex-husband, only to have us both break free of it all to end up here as the world is falling apart around us.
Please take a moment to read our thread about adverse childhood experiences. You owe it to your yourself to work through childhood trauma as you try to improve your own health. I had several years of helpful therapy, and thought I'd gone as far as I could, but when facing some new challenges several years later, I realized I needed more healing.

viewtopic.php?f=4&t=606&hilit=Adverse+C ... xperiences

And do come back and let us know how things are going.
You're absolutely right and I have been on the journey for many years, now. I've just experienced an unusual amount of tragedy from traumatic events (assaults, accidents, seizures/illness) and almost as many deaths of loved ones as I have years of life. After surviving my childhood and formally separating from my father at 13, I haven't gone more than 6 months without a major, life-changing blow, so the grief fatigue and C-PTSD is real and a lifelong work in progress.

That said, I'm deeply happy with the life I've built and enjoy wonderful, healthy relationships with my partner and my chosen family. I've long since fought my existential demons and ascribe to the philosophy that life is suffering and what pleasure/joy we have is a blessing. I'm also very fortunate to have no predisposition to depression. So while I grieve and experience a lot of stress, I always work toward equilibrium and take joy in what I have now, cherish the memory of what I have no longer, and accept all that is yet to come, for better or for worse.
laurie
Senior Contributor
Senior Contributor
Posts: 316
Joined: Wed Nov 22, 2017 2:04 pm
Location: Melrose
Contact:

Re: New! 37F apoe3/4 in NYC, Mom (71, apoe3/4) is Pending Alzheimer's Dx

Post by laurie »

Thanks so much for responding to my post. I hope you find ways to prevent yourself from getting Alzheimer's. Here is some more information for you to think about. Drinking silica water to remove aluminum from your body is such an easy thing to do. You mentioned the gut microbiome. 38% of the aluminum we ingest resides in the mucosa layer of the gut (the inside lining of the gut). There are studies describing the harmful effects of aluminum on the gut ranging from constipation to inflammatory bowel disease.

Here is an evidence based write up my husband did. "Aluminum is neurotoxic and it kills neurons and prevents neuritic growth and synapse operation. It interferes with internal messenger inside your neurons called calmodulin. People with the APOE4 gene produce more beta amyloid which reacts with aluminum to form neurotoxic droplets (Nano droplets) of amyloid oligomers. These neurotoxic droplets are very stable and mobile in your brain and are freezing the amyloid in the oligomeric state. Oligomers are 10 times more neurotoxic than amyloid plaque.” Dennis N Crouse PhD

Drago, D., et al.; Potential pathogenic role of β-amyloid1-42-aluminum complex in Alzheimer’s disease; Int. J. Biochem. & Cell Biol.; 40:731-46 (2008)
http://europepmc.org/abstract/med/18060826
Denise Drago - Aluminum Modulates Effects of βAmyloid1–42 on Neuronal Calcium Homeostasis and Mitochondria Functioning and Is Altered in a Triple Transgenic Mouse Model of Alzheimer's Disease 2008
http://online.liebertpub.com/doi/abs/10 ... .2008.0761
Apoe 3/4

"True prevention is only possible by first discovering the cause of a disease such as Alzheimer's."
Dennis N Crouse
artbellio
Contributor
Contributor
Posts: 15
Joined: Fri Dec 11, 2020 2:31 pm

Re: New! 37F apoe3/4 in NYC, Mom (71, apoe3/4) is Pending Alzheimer's Dx

Post by artbellio »

Hello! I used to live in Sunnyside Qeeens, now in Calif.
Something that helped my mom (1 copy apoe4) was photobiomudulation therapy (helmet) at home. We noticed a difference after 2 weeks. And the improvements continued. Sadly two months later she got a stroke. But there's a lot of studies on pubmed on it.
I wish you all the best.
I'm here for my mom (3/4), advanced Alzheimer's , just had a stroke in Nov 2020.
User avatar
DistinguishedHeathen
Contributor
Contributor
Posts: 32
Joined: Fri Sep 25, 2020 11:40 am
Location: Sunnyside, Queens, NY
Contact:

Re: New! 37F apoe3/4 in NYC, Mom (71, apoe3/4) is Pending Alzheimer's Dx

Post by DistinguishedHeathen »

artbellio wrote:Hello! I used to live in Sunnyside Qeeens, now in Calif.
Something that helped my mom (1 copy apoe4) was photobiomudulation therapy (helmet) at home. We noticed a difference after 2 weeks. And the improvements continued. Sadly two months later she got a stroke. But there's a lot of studies on pubmed on it.
I wish you all the best.
Interestingly enough. I just started to look into this for mom. I really appreciate the anecdote (in addition to the research evidence). Do you have a brand or link?
artbellio
Contributor
Contributor
Posts: 15
Joined: Fri Dec 11, 2020 2:31 pm

Re: New! 37F apoe3/4 in NYC, Mom (71, apoe3/4) is Pending Alzheimer's Dx

Post by artbellio »

We are using the Vielight.
We got the duo (gamma and alpha).
The company gave us a small discount.

I started to use it as a preventative measure.

Feel free to ask should you have any questions.
I'm here for my mom (3/4), advanced Alzheimer's , just had a stroke in Nov 2020.
User avatar
floramaria
Support Team
Support Team
Posts: 1450
Joined: Tue Jul 04, 2017 11:22 am
Location: Northern New Mexico

Re: New! 37F apoe3/4 in NYC, Mom (71, apoe3/4) is Pending Alzheimer's Dx

Post by floramaria »

DistinguishedHeathen wrote: Interestingly enough. I just started to look into this for mom. I really appreciate the anecdote (in addition to the research evidence). Do you have a brand or link?
To add another voice in support of this approach, Dr Bredesen has also mentioned that physical stimulation with photobiomodulation has strong positive anecdotal evidence.
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)
ReCODE 2.0 Health Coach with Apollo Health
User avatar
Tincup
Mod
Mod
Posts: 3592
Joined: Fri Aug 08, 2014 2:57 pm
Location: Front Range, CO

Re: New! 37F apoe3/4 in NYC, Mom (71, apoe3/4) is Pending Alzheimer's Dx

Post by Tincup »

floramaria wrote:
DistinguishedHeathen wrote: Dr Bredesen has also mentioned that physical stimulation with photobiomodulation has strong positive anecdotal evidence.
Can you elaborate as to the physical stimulation?
Tincup
E3,E4
User avatar
floramaria
Support Team
Support Team
Posts: 1450
Joined: Tue Jul 04, 2017 11:22 am
Location: Northern New Mexico

Re: New! 37F apoe3/4 in NYC, Mom (71, apoe3/4) is Pending Alzheimer's Dx

Post by floramaria »

Tincup wrote: Can you elaborate as to the physical stimulation?
Hi Tincup, Yes, the choice of words, "physical stimulation" is to distinguish that from the types of Brain Stimulation that Dr Bredesen has recommended all along as part of the ReCODE Protocol; that category includes things like learning a foreign language, learning to play an instrument, having social interactions, and training with a program like Brain HQ.
As I understand it, "physical stimulation" is directed at the brain from outside and includes photobiomodulation using Vielight.
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)
ReCODE 2.0 Health Coach with Apollo Health
User avatar
DistinguishedHeathen
Contributor
Contributor
Posts: 32
Joined: Fri Sep 25, 2020 11:40 am
Location: Sunnyside, Queens, NY
Contact:

Re: New! 37F apoe3/4 in NYC, Mom (71, apoe3/4) is Pending Alzheimer's Dx

Post by DistinguishedHeathen »

An update: On July 12, 2023, my beloved mom died at the age of 74 due to rapidly advancing Alzheimer's (she went from stage 4 to 7 in just two years), severe osteoporosis, and multiple myeloma (which was diagnosed in July 2022). Literally no intervention could slow the tide of horror, every 3 months brought a new cliff of breathtaking physical and cognitive decline. My mom died emaciated and in terrible agony -- having attempted suicide no fewer than two times in the months leading up to her final collapse and slow death.

In that time and due to severe stress and trauma, I gained 24 pounds and hit 176lbs as my own health plummeted. Only now am I beginning to pick up the pieces and restart my own journey to avoid my mom's horrific fate.
NF52
Support Team
Support Team
Posts: 2954
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: New! 37F apoe3/4 in NYC, Mom (71, apoe3/4) is Pending Alzheimer's Dx

Post by NF52 »

DistinguishedHeathen wrote: Wed Apr 17, 2024 11:07 am An update: On July 12, 2023, my beloved mom died at the age of 74 due to rapidly advancing Alzheimer's (she went from stage 4 to 7 in just two years), severe osteoporosis, and multiple myeloma (which was diagnosed in July 2022). Literally no intervention could slow the tide of horror, every 3 months brought a new cliff of breathtaking physical and cognitive decline. My mom died emaciated and in terrible agony -- having attempted suicide no fewer than two times in the months leading up to her final collapse and slow death.

In that time and due to severe stress and trauma, I gained 24 pounds and hit 176lbs as my own health plummeted. Only now am I beginning to pick up the pieces and restart my own journey to avoid my mom's horrific fate.
Please accept my deep and heartfelt condolences on the loss of your mother at the young age of 74 last year. I remember when you posted about her pending diagnosis, and your grief at having to understand what that meant, when she was not going to be able to do the same. It's no comfort to you that her doctors were probably just as surprised at her rapid decline, which may have been exacerbated by multiple myeloma, a rare and nasty disease that neither of you deserved to have as a double blow. Having no means to alleviate unbearable pain is an agony for the person witnessing it, and I'm deeply sorry that she was not able to find relief from that before her death.

I've talked with grief counselors over the years when I was a special education administrator who too often had children with rare, fatal conditions die too young. They reminded me that those children were now free of pain and, regardless of one's religious beliefs, were safely in their parent's love forever. It doesn't make it any easier to get through the trauma initially though. Like you, my weight was well above what it is now after years of supporting my mother with Alzheimer's, with too many hospitalizations and too much that I couldn't control until she died of heart failure.

Going through what you did USUALLY leads a period of "acute medical stress disorder"--when someone knows that a loved one is at risk of serious injury or death and they feel a rollercoaster of emotions and bodily reactions. It is normal to feel as you did and probably do today . You are showing real stamina and determination to be restarting your own health journey. I hope you also prioritize finding time to do something you love deeply, or have been waiting to do for too long.

If the grief and trauma ever seems overwhelming, you might want to consider a few sessions of grief counseling. Most teaching hospitals now have people who are both kind and skillful in working through grief trauma.

You have your own history and your own future story to write. Your mother would want it to be one with joy in it.

Warmly,

Nancy
4/4 and still an optimist!
Post Reply