29yo 4/4 with family history HELP

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pennsha
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29yo 4/4 with family history HELP

Post by pennsha »

To say I'm devastated is an understatement.

My grandmother has Alzheimer's. Two of my uncles have dementia. My mother is in cognitive decline but refuses doctors or testing. I've begun cognitive decline the past year but figured it was from anxiety and depression and grief from losing my dad from cancer last September. I am not married and have no kids. But I plan to. I watched Still Alice and bought the 23andme test that night. I ran my Promethase data a few hours ago. I've been on here ever since.

I understand there are diet and lifestyle changes I can make. I'm not ready yet.

My immediate question is what this means.
Yes I have the highest chances of developing AZ and high chances for CHF or some heart issues.

But WILL I is my immediate question. Will my children? Should I plan my future and long term care? Then test? Please don't tell me I should wait. I need to know. I need to plan. I watched my grandmother and watch my uncles and what they go through. I need to plan. Please someone help me out here. I already am fighting through different doctors with ANA testing and issues with systemic inflammation. Help?
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MarcR
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Re: 29yo 4/4 with family history HELP

Post by MarcR »

pennsha, my condolences - this is very tough news. I do think you're fortunate to have this information while you're still young. Damage occurs over a long period of time - by adopting good lifestyle practices now, you can slow this thing down A LOT.

I suggest that you start with Stavia's excellent primer. And don't try to do everything at once. You have time to rebuild your lifestyle deliberately and sustainably. Pick one thing at a time to improve. If your experience is similar to mine, you may find this news to be a blessing - the changes I made after learning my 3/4 status have had a big effect on my everyday wellbeing and happiness. That living well is likely to slow my cognitive decline is just icing on the cake!
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Re: 29yo 4/4 with family history HELP

Post by Silverlining »

Pennsha, right now, just breathe. Right now, you're ok, you are. This is shocking, I understand. Many of us have gone through it. The first is the worst. Your age is a HUGE benefit. Incredible, ground breaking science is imminent, I really believe that. Stress and anxiety over your father's death can very much affect your mental outlook and yes, stress can affect cognitive function. I discovered my 4/4 in the midst of a very close relative dying of a fast killing brain tumor. For at least a week, even two I truly wondered if I was losing it. Gradually the knowledge got easier, I became motivated to TRY to do what I thought would be beneficial for my overall health. Please, just rest for right now, try not to stress, be as kind as you can to yourself. I think things will improve for you. Hugs from our whole family here...
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pennsha
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Re: 29yo 4/4 with family history HELP

Post by pennsha »

Thank you for your fast responses.

First let me slow down for a minute.

I DO understand there is a difference between FAD and LOAD. I understand one is a genetic mutation that can be identified and one is a genetic risk factor. I might not ever get it. However I'm looking for further testing, doctors, neurologists, memory improving studies and supplements, ANYTHING that will help me here. And the suggestions for lifestyle changes to help prevent onset? Or... Channels, or whatever the term is for health links...

I also apparently have the genetic precursor for increased appetite and tendency to eat under stress. Who knew that was even genetically connected? Well it's completely true. I fight depression and fatigue as is. I struggle to maintain my eating. If this is going to happen I'll need the right supplements to help curb my appetite and increase my energy. I have to find doctors on board with all of this. Without screwing my future.

Can anyone help me getting started?
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MarcR
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Re: 29yo 4/4 with family history HELP

Post by MarcR »

Sure, Stavia's got you covered - start here.
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Stavia
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Re: 29yo 4/4 with family history HELP

Post by Stavia »

Pennsha honey we hear you. It's very scary.
But take a deep breath. Nothing cognitively will happen to you from the e4 for decades. A LOT will happen scientifically by then. Any clouding of thought right now is not your e4e4. I see there are other health issues going on which are more immediate.
In the meantime all our strategies are linked to decreased incidence of many major diseases. Have a look at my intro for a discussion of the major ones.
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Re: 29yo 4/4 with family history HELP

Post by Starfish77 »

Pennsha, you are dealing with so many things at one time. Stress often causes many temporary problems. You have time to learn about your options in dealing with all of this. We care about you and we have all gotten a lot of benefit from this group. I'm a 4/4 too. I'm 79
and am doing fine with all that I have learned to take care of my health from the helpful people on this site. Stavia's introduction for newcommers is such a big help. She explains things so well.
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SusanJ
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Re: 29yo 4/4 with family history HELP

Post by SusanJ »

Pennsha, you're in the right place for support. I'd like to also suggest you pick one thing at a time.

From my own experience, working on inflammation is huge. Depression and fatigue often go hand in hand with inflammation. And lowering inflammation is huge in avoiding heart disease and AD. Further testing could be aimed at understanding where that inflammation is coming from: Autoimmune? Bacterial or viral loads? GI issues? Inflammatory diet? Stress? Something else? Try to find an immunologist to work with or at minimum, a functional medicine doctor who can order the appropriate tests.

Once you can narrow that down, you'll have a better idea of what supplements, lifestyle changes, and diet will help you best. We're here as a community for you to bounce off your questions, ideas and the like, so please do keep in touch.
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Re: 29yo 4/4 with family history HELP

Post by Ruth »

Welcome, Pennsha. My deepest condolences for the loss of your father. Then to get this news, too, on top of everything else that is happening. Your stress level is understandably off the charts right now! But it will get better and there is hope for you. Hope you can rest and take care of yourself this weekend.
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pennsha
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Re: 29yo 4/4 with family history HELP

Post by pennsha »

Thank you Marc. I had read through previously and took the chance to read through again. I might need a few more times. :lol:

Stavia and Star thanks for the support.
Susan and Ruth thanks to talk as well.

So you'll see quickly I'm a book writer. Now that I've taken a few breaths I have several things for discussion if anyone is up for it.

I've never been regular. Cycle wise. I often suffered from abnormally large cysts on my ovaries. I have been on depo injections for 15 years (with a few breaks) to prevent this and additionally this stopped my cycles completely. Is this possibly a hormone imbalance that's related, and should I have my hormones tested and regulated each year? I also show all three genetic risk factors for breast cancer.

I have a HUGE supplement list. Most everything on your list. Plus many more. Should I consult a nutritionist or geneticist to be sure I'm doing the right thing? And not poisoning myself unawares?

At 29, I have several problems I fight with and have for quite a while. Most of my problems began at 16-20.
Systemic inflammation. I always test positive for ANA. Always homologous. I've seen several rheumatologists with no answers yet. We continue to try. YES I have advanced periodontal disease. My periodontist refuses advanced treatments after the deep scaling, simply because my tooth health and care is "impeccable" and she knows it's due to another cause, and encourages me to continue chasing my rheumatology connections.
Systemic inflammation. I also have early onset arthritis and degenerative disc disease. It mainly affects my neck. I have seen doctors for this for ten years and have currently been able to stop injections and am only on one medication. No NSAIDS. Only Tylenol occasionally and muscle relaxers only as needed during a spasm. Everything else is supplemental. But I'm facing inevitable surgery. And again I'm only 29.
GAD. I only was diagnosed with anxiety this year but after counseling I've clearly had it most my life. It's pretty well controlled now and I'm doing much better. The depression has been scattered among random times in life but really didn't affect me until I lost my father. I'm doing alright but occasionally it gets to me. My ONE medication controls nerve pain, anxiety, and depression, (Duoloxetine) and I'm on a steady low dose.
So... Could any of this be connected?? Should I inform my doctors and make them aware? I now have a ton of genetic information to sort through and I feel I need help in some way.

I'm ALWAYS deficient in VitD and B Complexes. I've been on supplementation of D off and on and B pretty much daily. I was diagnosed by a neurologist years ago of being deficient due to my bodies inability to store it and use it properly. Which was confirmed when I read through my genetic information. I showed the markers for exactly that. What is everyone's choice for B supplementation? I've tried the shots and sublingual drops to no avail. Currently I'm taking Vit B energy shots AT the advice of my doctor because nothing else will balance my levels. Or give me ANY energy. I'm fatigued almost always. Unmotivated as a result. Suggestions? Comments?

SOMETHING POSITIVE. So I don't sound completely doom and gloom here I would like to suggest something if I may. Since Red light therapy has been proven to increase ATP production (and is FDA approved for so many things) has anyone tried it? I have both a hand held device and a large back pad I use on myself, my dog (for her arthritic hips), and my horses (for swelling, stress reduction, inflammation in joints, etc.) I love it and use it often on my pets. I'm thinking I will use it more on myself if I can learn the areas best to treat. I'm also in process of ordering a systemic EMD (electro micro current device) to use on us all as well. It's end result is increased ATP and fully energized cells as well. Thoughts?

Apparently I also showed genetic variants that conclude I'm resistant or poorly absorb or metabolize certain medications. INCLUDING ALMOST ALL HEART MEDICATIONS. JOY JOY Right?? I've had a few bloodwork results come back with high cholesterol already. My doctors just shrug it off because of my age. I've had heart trauma before and wore a monitor for a year. They also shrug this off due to my age. Thoughts? Should I pursue a cardiologist for yearly exams?

Head trauma. Oh sweet Jesus have mercy. I'm a horse trainer. I've had more concussions than I can remember. (Har Har. Bad pun)
I even have imaging that concludes brain damage and poor circulation through certain areas and have been put on baby aspirin permanently. And I haven't been exactly consistent with it. (Boy will that change now..)
Soooo. Anyone else happen to have gone through any sort of head trauma and have a good direction to go or is it all just prevention from here on out?
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