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Newbie INTRO - Exodus 2/12/2018

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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Newbie INTRO - Exodus 2/12/2018

Postby Exodus » Mon Feb 12, 2018 5:10 pm

Greetings to everyone – Exodus, here! Wanted to introduce myself, but mostly just send a huge thank you to ALL of you for your transparency and candor and most of all for this treasure trove of information – no words are adequate, really, for my gratitude!!!

I am a retired healthcare professional – not physical medicine, but from the mental health and addictions field. I retired from coordinating a dual diagnosis unit and opened a private practice where I worked part-time until 2015 when my daughter’s disability needed to be more closely monitored.

She lives with both an Intellectual and Developmental disability. She has always lived somewhat independently, but struggles with that a bit now as she ages. She has a part-time job, but needs staff support the remainder of the time. Her “staff” is un-monitored and tends toward playing on their cell phones and taking frequent smoke breaks – ignoring not only my daughter and her needs, but her treatment plan goals, as well. The last one slept through the entire church service where she had taken my daughter.

I had been noticing more and more ‘memory’ issues overtime personally. It got pretty scary to think that I might not even be able to pass my own Mini Mental Status Exam. I knew, instinctively, that I needed relief from the high level of stress I was under, so for the past 6 weeks, I have been doing the staffing myself! I have been pleasantly surprised that my cognition seems to have improved and it has been positive for our relationship rather than the negative impact I feared, which caused me reticence re: doing the staffing myself! Last week we made grain-free crock pot granola – she photographed it to send to her case manager!

I can see that the skills needed for the increased responsibility, organizational skills and physical exertion are good for me, not-to-mention the release from the guilt of allowing the systemic abuse of her, but the tighter time constraints are difficult. I cook from scratch – even MCT mayo! I have followed a LCHF lifestyle for the past year with intermittent fasting and very little processed food - sugar free and gluten free. I have been following Dr. Bredesen since I first read about him and have read his book. I am currently in process of slowly adding some supplements that could help with memory/cognition.

I also read everything I can by various functional medicine practitioners– online – my other graduate degree is research oriented so it’s recreational reading for me! My own functional medicine providers have either retired or have switched to private pay systems that are a ‘no-go’ on my fixed income. I did meet with a new DO recently and have another MD who is also a Pharmacist knowledgeable re: MTHFR mutation, so do have some support following ReCODE as much as I can, but seem quite stuck in this dilemma of whether or not to do the APOE testing.

I have been reading “Thinking about Testing?” and appreciate the great questions – guess I am still processing and trying to apply them to my personal situation. My daughter & I are all we have – my son died in a construction accident when he was 25 and her Father has somewhat abdicated – moving away to a distant state and seeing her very infrequently.

Six months ago, I officially obtained guardianship of my daughter and we now have “back-up guardians” appointed by her beloved pastor. They are a sweet couple, parents of 7 children that I am just now slowly getting to know as they are incredibly busy. The wife of the couple is also my Healthcare Representative and POA should I become incapacitated or die. Since we don’t have living relatives, my mind immediately goes to this couple (that I barely know) when thinking about how to answer the questions – it’s complicated to say the least! I am very open to input from any of you who may face similar scenarios or actually to any/all ideas as I seem to be really stumped here.

I didn’t intend such a long treatise – I’ve tried to explain thoroughly without too much fluff – not sure how successfully!?!

Thanks in advance for any/all responses . . . Exodus

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Re: Newbie INTRO - Exodus 2/12/2018

Postby SusanJ » Mon Feb 12, 2018 5:44 pm

Exodus wrote:I’ve tried to explain thoroughly without too much fluff...

Exodus, welcome, and no fluff in this story. Life can be so complicated at times, can't it?

Keep reading - if you haven't already, start with the Primer. And if you want to know more about about MTHFR, try our wiki page.

And don't hesitate to ask any questions you have.

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Re: Newbie INTRO - Exodus 2/12/2018

Postby Exodus » Mon Feb 12, 2018 5:53 pm

Thanks, Susan! I do know I do not have the MTHFR mutation, but have high homocysteine, so working on that presently!
After my first visit to the Primer, I realized I needed to print out the 6 page glossary - now that I have it, I'll return ;-)

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Re: Newbie INTRO - Exodus 2/12/2018

Postby SusanJ » Mon Feb 12, 2018 6:00 pm

The MTHFR wiki page also has a section on high homocysteine. Take a look and see if any of it helps. And if you have questions, come back and ask.

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Re: Newbie INTRO - Exodus 2/12/2018

Postby Karengo » Mon Feb 12, 2018 6:17 pm

Hello Exodus! We're glad you found our site and welcome to our community! Thank you for taking the time to share some of your story. As you get to know your way around the site, you'll find there's a wide range of personal experiences and expertise shared here. I think you'll find the community is really supportive and full of insights.

As Susan J says above, please feel free to ask anything at all, including what resources may be available to help you as you navigate your way to optimum health. Sounds like you've already been checking out the Primer, too which is a great place to start - and glad you found the glossary, too! Also you can use the wiki page Susan J mentioned above to search on any topic you like. This will take you to other topics that have been posted in the Forum so you can learn from the community's postings and discussions. Feel free to join in!
Best,
~Karengo
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Re: Newbie INTRO - Exodus 2/12/2018

Postby Karengo » Mon Feb 12, 2018 6:21 pm

PS Hello again Exodus: I also meant to share with you - in the spirit of being honest and open here - that I'm also contemplating testing. I'm currently sitting on the fence while my 23andMe kit is sitting on my desk looking at me!
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Re: Newbie INTRO - Exodus 2/12/2018

Postby NF52 » Mon Feb 12, 2018 11:05 pm

Welcome Exodus,
As someone who spent most of my career working in the field of special education, I am sure I would have been privileged to know you and your daughter. My experience was often that families with children with developmental disabilities and mental health needs were exceptionally good advocates not only for their children, but often also in their professional lives with other families. Sounds like that has been your life also.

Given your background in running an agency, you are probably a veteran of navigating state bureaucracies! I am wondering, though, if your state Developmental Disability Planning Council, has programs, services or regional centers which might provide more individualized or effective support to your daughter. Each DDPC is federally-mandated to
develop innovative, cost-effective ways to meet the needs of people with developmental disabilities in their state, in a manner that upholds the human and civil value of people with developmental disabilities. Councils perform this work in collaboration with other entities funded under the DD Act, including the Protection and Advocacy systems and the University Centers on Excellence in Developmental Disabilities

https://ddpc.ny.gov/council_overview_responsive
In addition, here's a link to a Washington State article on person-centered planning for parents who may want to have a circle of support and care plan that provides future caregivers with a detailed picture and history of their child. It seems like the pamphlet they offer may be helpful with the warm support your daughter's pastor and parishioners are offering. Having a person-centered planning process and the model of circles of supports lets your daughter have a strong voice in thinking about all the spokes on the wheel of her life: recreation; social activities; volunteer, supported or paid work; health, transportation, shopping, money and healthy eating (like that granola!)
Person Centered Planning and Aging Families
https://wapave.org/person-centered-planning-aging-families/

It may also be possible for you and your daughter to explore additional living options for her which would include ISL (Individual Supported Living) and creative use of state funding to have dedicated small-group housing with on-site or nearby assistance. Here's a link to a recent article about options for that process:

The individual supported living (ISL) manual: a planning and review instrument for individual supported living arrangements for adults with intellectual and developmental disabilities. https://www.ncbi.nlm.nih.gov/pubmed/23796111

We are all going to need to develop new ways of thinking about "community" as we help all persons age with dignity and caring.
4/4 and still an optimist!

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Re: Newbie INTRO - Exodus 2/12/2018

Postby Searcher » Tue Feb 13, 2018 5:24 am

Exodus wrote: I am very open to input from any of you who may face similar scenarios or actually to any/all ideas as I seem to be really stumped here.


Exodus,

Welcome, and congratulations on all you are already doing to live a healthy, meaningful life. I'm moved by the extent to which your life is driven by love. It's an inspiration.

My main criterion for testing is:

What decisions or choices depend on this test?

If the answer is "nearly every decision or choice" then testing seems advisable.

If the answer is "almost no decisions", then testing seems superfluous.

You seem already to be living as if you carry the APOE4 gene, and to be doing so with reasonable calm. That's a good position to be in, because you're probably controlling your cortisol level well.

How much of your risk of eventual dementia depends on your genes?

Studies of twins, such as the one below, are informative.

https://www.ncbi.nlm.nih.gov/pubmed/15653172

40% of the risk of eventual dementia is attributable to NON-genetic factors, among ordinary people who make no effort to live healthy lives. That percentage is probably boosted by the sort of healthy living that you're practicing.

I keep telling people: You have genes. They don't have you. To reverse that position invites avoidable anxiety.

If you develop troubling symptoms and complaints which are not resolved by healthier living, then it would be wise to do the tests that your primary care physician recommends as a way of taking decisions. That may include exploring your genome. Until then, it seems wise to live as if you carry the APOE4 gene, so as to boost your health and well-being.

Thanks again for your example of love, courage and calm confidence. Long may you flourish.

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Re: Newbie INTRO - Exodus 2/12/2018

Postby Exodus » Tue Feb 13, 2018 12:37 pm

Thanks Sooooo very much to everyone for the speedy responses and welcomes...I'm on duty today and some of tomorrow, but will respond asap...haven't figured out how the PMs work on this list...is there a tutorial, etc.? Later...Exodus

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Re: Newbie INTRO - Exodus 2/12/2018

Postby slacker » Tue Feb 13, 2018 1:02 pm

Exodus wrote:Thanks Sooooo very much to everyone for the speedy responses and welcomes...I'm on duty today and some of tomorrow, but will respond asap...haven't figured out how the PMs work on this list...is there a tutorial, etc.? Later...Exodus


the little envelope in the right upper corner allows you to PM. In general, we encourage members to post questions directly on the website for everyone's input and benefit. Of course if the recipient has encouraged messaging, go for it!
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