Little Empty Boxes

The First ever Alzheimer's prevention documentary. Understanding the Starved Brain: Why Sugar Fails Alzheimer's Patients

Dear friends,

This week, I want to introduce you to an important piece of work: "Empty Little Boxes" directed and produced by Max Lugavere and Chris Newhard is the first ever documentary on Alzheimer's prevention. If you are wondering why this is important, let's just establish that if you are someone with a brain, you need to know about the information shared in this wonderful film. Let’s start with Max's own words, about what this documentary is not.

"… It is not a nutrition documentary, it's not a diet movie, the film doesn't advance a one size fits all prescription to end dementia, nothing like that.”

His inspiration for the documentary was his mom Kathy Lugavere, the star in the film, who was diagnosed with Lewy body dementia, very young, in her sixties. Even though she was young, (I am not that far away from reaching that shore myself); her story is tragic, and she will inspire you to do better, to do more, to guard against this pernicious silent creeper.

What I find most shocking about this dis-ease is that by the time symptoms manifest, you are already chained to the kitchen sink. If that was not enough, this involuntary lockdown was in the making for 20 to 30 years. But what if we could do something about it? What if the competing ideas presented in this documentary were instrumental in devising a plan that may prevent it all together. One of my favourite parts is about the musical notes (which if you clicked the link above you already know what I am referring to) to explain how the causes come about and I find it very insightful, in the same way that karma can be insightful if you look on actions and their effects as a connected continuum, very much like life is a continuum and the result of a myriad of actions (decisions). I won’t spoil it for you, just watch the documentary, but it is a wonderful metaphor for us to contemplate for years to come for many aspects of life including that of afflicting diseases.

In Max's own words this piece of work: "it presents a number of really compelling ideas, but ultimately the message that the film sends is a message of empowerment - That we no longer need to sit idly on our hands. I don't pretend to have all the answers - the film certainly doesn't, nonetheless it still lights a candle for those who are in the pit of darkness and in the fog of war of chronic disease.”

For me, it is a look in the mirror, into the last 8 years of my life. I am amazed to realise that there are so many similarities not only in what is happening on screen, but perhaps the most striking one of all is the shared disbelief I could identify with as I watched the bathroom scene. The first time you witness the difficulty someone has in doing the simplest of tasks it is truly not just unexpected, but traumatising. All displayed before me, before us, with beauty, and sensitivity, but above all love. It is a piece of work everyone involved should be proud of. Lets not forget that watching this documentary is getting involved with it too, and I hope as many of us as possible will do it. No one knows where and who it will strike next, so it is best to be prepared.

Another reason to support it is that this project started as a Kickstarter and it is joyful to see the names of the backers listed at the end of the movie. I am sure they are delighted with their patience. They certainly waited a long time to see the project completed. Get your copy of Little Empty Boxes here. It is a movie that shows the desperation of having a chronic disease, but it also carries within a lot of hope. As Max or Chris put it, this is an "invite to participate in a project that has the potential to do a lot of good for a lot of people.” I don’t know about you, but I certainly want to play my part and tell my loved ones and those who are around me about it. I hope you feel inspired to do the same.

Perhaps because it was too close to home, Max asked Chris for help and when Chris joined the project, someone in his family had just received their dementia diagnosis. When asked what he thinks the film is about, he says, "Not a film about dementia, not a film about medicine, but a film about a person. Not just the documentary footage, but an entire life." And so it is. You have to check it out for yourself. It is the most stunning use of home footage, of family moments I have seen in a long while and what makes it really beautiful and a complete piece of work. The family footage unifies the all thing, the life, the work, the struggle, the love and the fighting spirit we need to call upon when tragedy strikes.

Just in case you are young, and think this is a topic that does not interest you, if you're thinking of having children later, then there is something shocking in this documentary for you too. If you think that dementia or aspects of the dementia brain relate only to older people, you may want to check out what is happening with children's brains, and start gathering information to prevent such situations for you and yours in the future. It is too late for me, Max and Chris, and our loved ones, but I wish everyday that I knew for instance that this dis-ease was preparing itself for a great entrance for the past twenty to thirty years. Hindsight is marvellous ins’t it? But if’s are just if’s and not very helpful, but this documentary brings within a light that may afford many a better shot at making changes that are truly effective. 

I walk the beach every day, and I wonder what the effects of the waste incinerator planted in the middle of Dublin Bay will be on all of us in future days. It is clear that our environment and our diets have an impact on our health and since Alzheimers is a dis-ease of our times, it is quite remarkable how no consideration was placed on the health impact for human beings. I understand it being the most appropriate spot for ease of transport for all the surrounding areas in Dublin, but I fear we may come to regret its cost in many ways in the future. And to think that those who made this decisions will have no qualms in reminding us that we must stay on track with Sustainability Development Goals, except that we ignored goal three completely. I want to remember that we failed completely at the SDG’s precursor the Millennium Development Goals and that the new so called goals are there solely to keep us busy thinking that in some way those making decisions for us care about our health, but I will beg to differ.

Nevertheless, and despite the discovery of certain compounds in the air that may contribute to Alzheimers disease, a lot of progress in the understanding of Alzheimer’s has been done in the last ten, fifteen years, but I will talk a bit about why this information is only reaching us now. Yes, there is yet another scandalous case of fraud to be aware of.  And this one affects the most, those inflicted by this disease. 

Kathy Lugavere's situation changed Max's life course and he has a very informative podcast and will continue to share his discoveries. They are informative and very enjoyable conversations, so sign up and ping that bell to keep up with everything.

My mom is doing better than she was two years ago. She still has Alzheimer's, but there is no doubt that diet change and lion's mane supplements are very beneficial to her. I had started giving her Lions Mane before the pandemic, but half way through I could no longer order it from Paul Stamet's Host Defence; and I started to panic as I could not find anywhere to purchase it. In one of my desperate hours, I saw a clip of Max talking about his experience and of course it resonated with me. I can't remember if it was TikTok or Instagram, but I sent him a message about the lions mane supplement difficulties. Do check out this article : Effects of intensive lifestyle changes on the progression of mild cognitive impairment or early dementia due to Alzheimer’s disease: a randomized, controlled clinical trial

Once again feeling like Kate Winslet in the Titanic when she says, "I am screaming from the top of my lungs, and no one is listening" - or something to that effect, I decided to ask a question. When I checked back, Max had answered. He did not tell me how to solve the problem, but he told me that someone was listening, which is what I needed at the time. It felt like I had received an ice bath in the Sahara. Thank you Max.

My mom has never taken any of the Alzheimers medicines Kathy was on, perhaps because she already takes enough medicine for her heart and thyroid, but I feel that this has been a blessing. It has always been a mystery to me, how can doctors or anyone for that matter be confident that nothing will go wrong with the cocktail of the numerous compounds. So not adding more into a already scare pile of explosive ingredients seemed a reasonable decision to me.

When I Googled the side effects of the drug she is on, I was beyond freaked out. But, then I though - she has been taking them for 40 years. I I decided to trust her doctor and he has been very supportive of me and my investigations and requests. But is everyone as fortunate as we are? I can see from the range of services provided that people have no idea about the effects of sugar on someone with an Alzheimer's brain and so desserts and cookies are always waiting for them. 

I have cut sugar out of my mom's diet and she only has it on special occasions and in the clubs, but I wish that it could be a treat rather than being the primary reason to to go to the club. People with Alzheimer's can't process glucose so 50% of all glucose is transformed into fat, but their brains feel starved and crave sugar so they develop a sweet tooth as a result. But now there are good alternatives, one of which we are testing now. I got mom caprylic acid. It is like giving the brain ketones. If it cannot tolerate glucose then it seems logical to me that if it works in terms of at least reducing the cravings for sugar, as the brain should not be as desperate for energy as without. I will report back on any results.

I hope that health service employees, the Alzheimer's Society of Ireland, and all the clubs and services that accept people with dementia can find their way to this article and more importantly to this documentary. It is crucial to watch the documentary and update our understanding of the latest research and findings. By doing so, we can provide better care and support to those suffering from this debilitating disease. Your role is vital in improving the quality of life for those with dementia and their families, and staying informed is the first step in making a difference.

On the next post, I will comment on the Alzheimer's research fraud scandal and I will dive further into this aspect of the research which is mentioned in the documentary - the diabetes 3 hypothesis. This seems most important to me. In my experience people dealing with Alzheimers sufferers seem to be oblivious to what is happening to the people under their care. I understand. There was a set back of about 20/30 years due to the mentioned fraud above, so it is natural that it takes time for people to catch up and that it is easy for scepticism to set in, and with all the nutrition science difficulties added into the mix, it is natural that people are reluctant to make changes, but change is constantly happening and moving into a beneficial way to support those suffering from this affliction can only help.

But for now, it is best to enjoy Kathy and Max and gather insights on how to best care for your loved ones and yourself. Since it took me almost a month to ready myself to write about it, I will give you some breathing time to watch the documentary first and then I will share more useful conversations and links so that we can continue to educate ourselves on the best approaches to prevention rather than having to deal with watching before our eyes the degeneration of the minds of our loved ones and ourselves. I don't know about you, but it was a relief to me to find out that about 3% of Alzheimers diagnosis are hereditary.

Want to learn more? Listen to the JRE podcast episode that inspired this article:

• And for the Little Empty Boxes Documentary

Let's end with more of Max's words: "make sure that the people you love in your life know that you love them." And so send the documentary to everyone you know and ask them to do the same. To go to part II of this article, click here.

Until next time,

Bee well,

Xanda