PAUSE FOR THOUGHT

For more than two years I’ve been researching Alzheimer’s disease and the process is ongoing.  There are many carers telling their stories and even dementia sufferers still able and willing to tell theirs.  As well of course, as specialists writing books and articles.  Unfortunately specialists are exactly that, their areas of expertise exist within the perameters of their subject so their approach is unlikely to be holistic.  Also the current, overall scientific viewpoint is, for the most part, materialist/realist.  All about what is proven using solid evidence which can seen and tested.

FOREVER SEARCHING

Carers and sufferers, on the other hand, experience life very differently.  They will come from a wide range of relationships, backgrounds, life histories and so on.

As I continue my quest to learn as much as I can, I’m finding, in amongst the extensive data, seemingly unexplored aspects of the disease which I think are of paramount importance if we are to come to any real understanding of the monster we’re dealing with. There are so many books/online sites/documentaries/ articles/organisations all putting forward their take and much of what they have to say is extremely helpful, but shouldn’t we be looking outside the usual box too?

To take the main aspects in turn (in no specific order):

A TANGLED AND GOOEY MESS?

SCIENCE AND THE BRAIN:

We used to hear about the inevitable deterioration that comes with ageing, then amyloid plaque came into the picture, gumming up our neural pathways. And, as if that wasn’t enough, our grey matter was found to get into ‘tangles’.  On top of these could be general damage – we may have knocked ourselves unconscious at some point, been anaesthetised (general or local), X-rayed several times or taken medications that can have brain fog side effects?  Now we’re hearing about inflammation, holes in the blood/brain barrier letting nasties in and leaky gut infecting our blood.  Unhealthy lifestyles and bad dietary habits haven’t helped.  The emphasis is now on our stomachs, our microbiome.

The big problem with these ‘causes and diagnoses’ is what applies in one case may not apply in another and what affects one person may not affect another.  Some people have horrendous diets and habits yet enjoy reasonable health until the day they die. I’ve read of pathologists discovering brains in advanced states of deterioration and yet, the deceased people had apparently been sharp as a tack until death. It seems to me that computer in our heads is far, far too complex to be fully understood.

RATHER EMPTY HEADED?

Anyone who has read ‘The Man Who Mistook His Wife for a Hat’ by Oliver Sacks will have been amazed at the extraordinary cases he came across in his time as a neurologist. And, even more amazing are those apparently normal, functioning people who were found to have very little or almost no brain!  Now that is hard to believe, but we can check it out if we doubt it.  There those who have extensive brain damage and show no signs of it in their behaviour or, on the other side of the coin, behave extremely strangely with no evidence of any brain dysfunction at all.

Of course, I accept that these cases are rare and the norm is that a malfunctioning brain will manifest itself.  But to pin down exactly what causes dementia is proving very difficult and theories abound.

ALL THAT ANGST

My thought:  In each case there could be multiple factors to take into consideration.  Surely these should include the emotional, psychological and spiritual health of the individual.  Perhaps good lines of research could look at personal characteristics.  For instance, do they:

• refuse to be realistic about illness and aging?
• feel their expectations of life have been fulfilled or not?
• still suffer emotional pain from past or present trauma? (my post ‘Organs Weep ..’ looks at the possible longterm effects of childhood trauma)
• harbour anger, frustration, hopelessness, lack of self-worth?
• fear death?

(note: conviction that we do not have ‘spiritual energy’ that survives physical death can plunge us into despair when faced with our inevitable demise – dementia or no dementia)

I’m convinced these factors will all make a difference, not just in diagnosis but in how those living with dementia cope with the disease.

TREATMENTS:

Nearly every day, an email will arrive in one of my inboxes claiming to have found the formula or protocol to prevent, halt progression or even cure AD in the early to mid-stages. I have endured endless audio/videos insisting that by listening to the end, I will learn what a particular miracle treatment will achieve.  It’s virtually always an advert for some pill or other at a reduced price, of course, with a copy of the ‘inventor’s’ book thrown in.  I listen because I think there is always a possibility I might learn something.  I rarely do – it’s usually the same old stuff dressed up in different words.

MIRACLE PILLS

There are docuseries too with experts giving their specific take.  These are free and I’ve learned a lot from them.  Mostly about treatment methods, lifestyle choices and ‘miracle’ foods and supplements.  I take on board those which come up regularly and investigate them.  As a result of including some of these foods in our already nutritious diet, we can claim to be in good health!  Sadly though, none have yet slowed the rate of Leaf’s ‘progress’ down the slippery slope.

Maybe it’s too late. We’ll probably never know.  What is enormously helpful in our case is that my dear husband is lucky enough be emotionally and spiritually healthy. I don’t have to overcome any of the additional hurdles in our day-to-day living.

MEMORY:

Where are our memories and how do we store them?  It’s thought that the hippocampus, amygdala and cerebellum play lead roles in consolidation and storage. After that our memories appear to ‘migrate’ to different parts of the brain.  Then, as long as there is the appropriate stimulus, other working units will bring them to the forefront of our consciousness during a later process of retrieval.

I wonder if our memories could be said to spring from anywhere in or on our bodies. For instance, if we smell something that triggers a memory, it could be said that memory is in our nose, or our mouth if we taste an old yet familiar food.  Our ears seem to have fantastic memories, as do our eyes and our skin.  We know those sensations will travel to the brain to be interpreted, but where we first experienced them must surely be relevant – after all, we don’t actually ‘feel’ them in our heads!  To tap into our memories, perhaps we need to start with our sense organs themselves.

GIVING SOMETHING TO REMEMBER

There are therapies which do just that, but could we go further and use them, by association, to create new memories which could bring about positive emotions?  Just a thought.

HEARTS AND MINDS:

When expressing emotion or intensity, either positively or negatively, what might we say?  ‘He or she is my sweetheart’, ‘It broke my heart’, ‘We were having a real heart-to-heart’, ‘From the bottom of my heart,’ and most tellingly ‘I’ve had a change of heart’ – meaning I’ve changed my mind!  And we know that when we’re excited about something, our hearts will race and will thump when we’re scared.  So what do these tell us?

As well as a physical connection, our heart has a symbiotic relationship with our brain.  In fact, there is a new field of medical research known as Neurocardiology resulting from the discovery of neurons in what is now frequently referred to as a fifth brain, our heart.

MULTIPLE CONNECTIONS

My thought:  As so many of our memories evoke emotional reactions, might they be stored in our hearts and accessed through feelings? They say feelings are the last elements to go once the dementia brain has ceased to function in other vital ways.  Maybe instead of only working to ‘awaken’ joy and comfort in late stage patients by arousing emotional reactions, we could try and help those in the earlier stages find a way to store new memories by connecting them with specific feelings throughout the duration of the disease. There may well be therapists doing just that – I have yet to come across them.   On a very simple level, connecting hearts by physical contact is a popular feel-good therapy – perhaps a hug or specific touch could consolidate particular types of memories???

CONCLUSIONS:

Whatever causes dementia, whatever activities, concoctions or protocols we apply, as yet, the scientific establishment, the myriad of specialists in multiple fields and the various therapists have yet to conquer the disease.  There might come a eureka moment when all the pieces of this most complex of jigsaws falls into place and a foolproof cure for patients at any stage is discovered.

ONE HELLUVA PUZZLE

In the meantime, we struggle on, taking each day at a time, finding joy and laughter wherever we can and never despairing or giving up hope.