Alzheimer's is something to prevent 20 years ago. So start early.
My mom: "What is this?" Me: "It is food, you eat it." Me - spoon feeding her a bite to taste it.
Caregiving is a thankless job if you are expecting words, or cooperation, or appreciation consistently.
How to offer help gracefully is a challenge that I failed twice at on Twitter this morning (*yesterday). People seem to take what I say, as “Telling them what to do.” I am blunt, and brief in my communication on Twitter (where I am shadow banned, subscribe herecto see my work). Offering info or an opinion is not an order yet that feedback is one I’ve run into a few times.
Today I was told to read the other replies and see that the Tweeter was quite nice to them. So I did, it was formulaic and “Can I offer this info” was a desired opening, and why is something relevant or worth looking at? That is helpful but not always easy to fit in 280 characters. That is content marketing and good copywriting.
That does fit adult education guidance - how is the info going to improve their life? And are they even interested or asking for it in the first place? Why should you be interrupting their life?
Another person’s suggestion was roughly about time and place to tell your own story. The thing to keep in mind is that the controlled media does not want natural healing strategies to be shared. There is no time or place for it.
I finally gathered that another ‘didn’t go well’ conversation was because the person’s focus was on how bad ME/CFS is and how much of a need for research there is. Well, yes, and yes. Agree 110% - the bonus 10% because I have written extensively about a research study or two that I would like to see happen.
The thing to keep in mind is that, uh, that is not going to happen unless it is private funding or fundraising occurs.
Research is funded for pharmaceuticals that will likely not help any underlying causes because the underlying cause was not investigated, or was not found, or was suppressed because it was an inexpensive nutrient.
The other feedback about that conversation was ~ “How can I dare make any suggestions about food when someone is so sick they aren’t able to care for themselves?” I am aware of that too - but starting somewhere is where you do have to start. That is why starting 20 years ago would have been sensible but we have today and hopefully tomorrow. Covid was a surprise but LongCovid is no longer a surprise to many - just don't expect wide recognition or support. Autoimmune and other chronic conditions often get little support or help.
More seriously, yes, it was part of my research ideal plan - a live-in facility for three or more weeks to get a baseline health and cooking plan established. Meals and cooking classes, lifestyle change classes or sessions of exercise and meditation/relaxation strategies could all help patients who are so sick they can’t really do stuff for themselves yet. Even more ideal, have the patient and their caregiver at the facility to taste the new diet ideas and attend cooking prep demos and other education classes - caregiver, or attend a relaxation breathing training - patient.
Many things are likely wrong to end up with chronic illness symptoms like ME/CFS, fibromyalgia, LongCovid, or schizophrenia, bipolar disorder or Alzheimer’s dementia - but the pattern of similarity means that similar steps towards change may help people with any of those issues.
It hasn’t been easy but there has been an enormous difference is reducing my mother’s constant panicky anxiety to non-anxious and more present cognitively. I bought a bouquet for mother’s day and she spontaneously said “That’s pretty.” And that was a huge win compared to every five minutes asking the same question about a reflection on the neighbor’s mailbox.
Cognitive health is a blessing that is different than physical health which is also a blessing. It is sadly treated as hopeless in the current medical system - or only a hope for ‘stable on medications’. Except the medications tend to deplete mitochondrial support nutrients and cause worsening mental health.
The underlying pattern that we need to correct is providing mitochondrial support nutrients and avoiding inflammatory things and moving toward a diet balance for macronutrients that is lower than 10% of total calories from saturated fat and lower than 50-60% total calories from fats all together - as that can cause mitochondrial dysfunction or worsen microbiome health. Adding plant phytonutrients can help reduce inflammation, infection, and reset microRNA imbalance towards healthier types while also modulating microbiome species towards beneficials and reducing negative types in an anti-microbial way.
I have lived through it, but at some of the early worse stages I was living with family rather than being single and trying to cope through brain fog or jittery whirling thoughts. Histamine excess episodes can be like autistic meltdowns, or the Karen videos that we see sometimes that looks like it really was an anxious person and not a racist.
Having lived through weird brain periods of my life and gotten healthy enough where meltdowns are rare instead of daily - yes, a live-in facility is really a need for patients with chronic fatigue type conditions or other neurological issues significant enough to make self-care kind of impossible. The good news though, is that restoring normal, old, pre weird, mental and physical function is possible - depending on far along the inflammatory damage is.
Before the darn three jabs my dad insisted on, my mom’s improvements with my diet help led her read a book. Currently she reads road signs and likes to navigate - side seat driver. The jabs caused changes and are bad, um kay. Moving on.
We are not at 20 or 3 years ago, we are at today. Carpe diem!
Major point not to forget - the mental illness progression seems to be, mild anxiety/depression, get prescribed antidepressants/anti-anxiety pills → those cause mitochondrial support nutrient depletion —> leading to bipolar or schizophrenia diagnosis and more prescriptions —> which deplete more of the important nutrients —> leading to Alzheimer’s or other dementia.
Chronic fatigue patients may have mental symptoms that get them put on the above slippery slope or they may receive other meds that cause nutrient imbalance.
What neither group tends to get is an analysis of 20 nutrients to see which of the 20 or more are deficient or in excess.
What I discovered in a series last summer was that the list is even longer really of factors that might be causal of ‘schizophrenia’. When a condition is given a ‘name’ then it is treated as if it is a ‘single thing’, rather than as a systemic dysfunction that can have multiple causal factors all adding to the condition - and all needing to be addressed potentially before the ‘condition’ will be ‘cured’.
When you have 20 things wrong with you and your insurance company and doctor only want to look for one thing to treat, then that leaves you with 19 unresolved issues or 20 unresolved issues and possiblyan unnecessary treatment that may cause other incidental harm.
Apparently, I seem condescending to one of the Tweeters. Part of the definition for condescension is disdain, it is not from a place of disdain that I offer help, it is compassion. Seriously, histamine excess is really bad. People commit suicide in all probability, because, it is just that bad. It can cause horrible strong feelings of whatever the person is focused on. Acting out violently may also be a risk. Out of compassion I am saying that ME/CFS & other chronic conditions may be helped immensely by following a low histamine diet and possibly also a very low carotenoids and vitamin A diet - if Retinoid Toxicity is a factor.
The puzzler is that low vitamin A or excess active Retinoic Acid both cause symptoms of schizophrenia - so a study on ‘vitamin A for schizophrenia’ would likely get mushy results. It would help those deficient and worsen those who were over-converting to Retinoic Acid = muddy heterogenous data instead of a homogenous study group all reacting to the experimental treatment in a similar way.
“Similar Steps” as I mentioned earlier - does not mean treating everyone with the same “Protocol” or “Stack of supplements”. It means screening everyone similarly to find out what they individually may need from the list of 20 or more nutrient factors that may be involved in mitochondrial dysfunction. Or what may be in excess and needs to be reduced.
If it is an over-conversion of vitamin A and carotenoids to Retinoic Acid - then ‘a cure’ will NEVER be possible without greatly restricting vitamin A and carotenoids because it IS THE RETINOIC ACID CAUSING THE SYMPTOMS.
Does that help explain why I think I do need to share my story about how I resolved my ME?CFS?fibromyalgia - post EBV case of chronic fatigue and other symptoms?
Retinoic Acid excess adds to histamine excess which causes bad symptoms in the short term and cognitive damage to the hippocampus/Alzheimer’s risk over the long term. The bad symptoms in the short term can include suicide or homicide but that is more of a risk for psychiatric drug withdrawal patients which may also involve liver injury causing a sudden excess of active Retinoids.
Pain hurts, health is better. That is why I share info. I also learn things that help my own ongoing health issues. I was handed interesting genetics as a baby and those are the cards that have to play with. From a young age I learned that what I eat and which plants I nibble on can make me feel better. That is news for you to figure out for yourself but tips about what helped others can be helpful as a place to start.
Yellow wild strawberry flower and Ground Ivy
I'm not really sure what I am going to do when I grow up, I am still growing.
How to better share my research and self-care findings is an interest.
I started setting up an additional Substack nested under this one that would be more single topic, encyclopedia style for reference ease if use. Protocols and therapeutics or herbs could each have a post. Settings can be clicked to automatically enroll all previous and new subscribers however I was thinking of letting people decide for themselves to subscribe. I don't want to spam anyone with excess emails. *Not set up yet, I will post about it.
Please add a comment if you have any suggestions on how I might better share my info, …within a low budget and limited time. Or simply, which topics should I get back to quickest? What are first priority topics?
Disclaimer: This information is provided for educational purposes within the guidelines of Fair Use. It is not intended to provide individual guidance. Please seek a health care provider for individualized health care guidance.
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