Dementia, Sense of Smell and Current Research

Current research shows that there is a possible link between the loss of the sense of smell and death perhaps within five years. http://www.theguardian.com/science/neurophilosophy/2014/oct/01/your-nose-knows-death-is-imminent   The theory is that when the brain is no longer able to process smells that it is possible that death can occur within five years. There is no single cause of death found in the link.   The diminishing sense of smell is something that is one of the many symptoms in dementia. 

I first remember a problem with my sense of smell was when I was about 14 years old.
I was home ill from school and was on the sofa, it was a wet day and my mother had draped some washing to dry on the large square fireguard surrounding the hearth.  On it was my older sisters new twin-set that my mother had bought her to wear in her first job.  My mother came into the room and started shouting at me, ‘couldn’t I smell the scorching?’; actually no I couldn’t.  The light grey twin-set now had yellow scorch marks over the sides facing the fire.
From then on I noticed my faulty sense of smell: a lack of smell for some things, not being able to identify some, and over sensitivity for others.

When I was 18 a factory next door to where I was working had a problem with chemicals they were using and the smell of it was making me vomit throughout the day. I was the only one who had this reaction to the smell and investigations by the Public Health Inspector (who happened to be my father!) concluded that Napthalene was the chemical and that their chimney needed to be raised.

Then at one workplace in my 40/50’s the perfume ‘Vanilla’ worn by a work colleague, (which one I don’t know but it is one of the more expensive fragrances), would make my nose bleed.  When women lust after the current ‘must have’ perfume to wear, I just sniff and grimace wondering why they all smell badly of soap, or compost heaps!  The brain is instrumental in interpreting what the olfactory organ presents it, and it appears that mine has always been a bit ‘damaged’ in some way.

The smell of food; bacon frying, pizza, roast chicken, fresh strawberries or whatever our personal favourites are all have an effect on our brain when we smell them. You smell something wonderful like freshly baked bread and coffee and your brain processes that with perhaps memories, ideas and hunger.  You can imagine the taste, the satiated feelings of being fed, but for me smells of food did not appear to trigger anything, especially not hunger. I can honestly say that from a very young age I have never felt hungry.  Food was not something I enjoyed, eating was something that you had to do each day. I remember as a child never wanting to eat, crying as I sat at the large square dark oak dining table with thick barley twist legs that I loved polishing as I sat underneath. I was not allowed to get down unless I ate something and so I sat seemingly alone for hours, crying not wanting to eat the black cabbage that had been cooked in the pressure cooker for 20 minutes until it was bitter.  As a baby I would not eat and no-one knew why; this I was told by my mother who said it accusingly as if I was wilfully starving myself to make her life a misery.

So now I read about Alzheimer’s and how it affects the brain, I read about different symptoms that show a cognitive decline consistent with the disease.  It is hard not to try and fit your own ‘disabilities’ into the pattern that combines towards early Alzheimer’s and as I look back at these anomalies and hear other people living with dementia talk about when they first noticed these ‘symptoms’ as they have got older, I am transported back to childhood to a time when my mother was hitting me round the head with daily regularity (a clip round the ear is often spoken of in jest nowadays).

One of the first things I noticed when I started to take Rivastigmene as prescribed for me for my Alzheimer’s, was how my sense of smell appeared to be awakened. I could walk past cafe and the smell of food made me feel ‘hungry’. Now Iunderstood what others experience with the aroma of food, however eating the food does not stop the ‘hungry’ experience so that I am not satiated when I eat.  What I now experience is the smell of food triggering a notion of enjoyment of eating, and a connection between enjoying the 102493883smell and the taste.

All I need now is another trigger to let me know that my desire for the taste of something has been satisfied after a few mouthfuls!

It seems the more we learn the less we know……

My Alzheimer’s Journey – an update

I had an appointment at the opticians yesterday after having some problems with my vision.  A couple of days my right eye hurt and my vision appears to have worsened over the past couple of months.  My eye pressures were fine, and in fact were lower than they have been at 19 and 20 mmHg (millimetres of mercury [mmHg]).  As I have thicker corneas the pressure will always register slightly higher.  I need new glasses for distance.

I mentioned that when I read the right hand side gets smaller, so that it is like reading down a funnel, and that it feels like my right eye is not quite functioning properly.

This is how it looks to me

So, the opticians gave my eyes a thorough check and said my eyes look healthy.  We discussed the brain scan I had had two years ago and the fact that the abnormality, and head pain I get is all on the right side.  It could be a problem with perception rather than my eyes she said; my brain you mean, I thought.  I am not sure whether I am worried or fascinated by the neurology of it all.   I thought of Terry Pratchett  and his rare type of Alzheimer’s affection his sight.  We know very little still, about the brain.

A letter to my Doctor to refer me either to my Consultant for the Alzheimers, or the Consultant for my eyes to re-check all is ok will be sent.  Seems like it is more to do with my brain than eyes. 

An Interesting part of my Alzheimer’s Journey….

It’s done, I have given my brain away!

Update on my Alzheimer’s Journal

Today I signed the papers to donate my brain and spinal cord..obviously after I am deceased!

Brains for Dementia Research wants donations of both those with Alzheimer’s and Dementia, and healthy brains.  Without brains there is less research, and less hope for people like me with AD (Alzheimer’s Disease).

Neuroscience has move on with our knowledge of AD but not enough to prevent it, and it does not discriminate who it takes.  I don’t have a history of AD in my family so it is not something that ever crossed my mind thinking about getting older.  Yes, my mother has vascular dementia but it is through a serious of mini strokes not inherited.

If you are interested to find out more about it, here is the Project site for information.

http://www.brainsfordementiaresearch.org.uk/

I am one of those people who believe that when you die your self/conciousness/soul has gone and your body is the vessel that is left behind.  I have always wanted my death to have meaning of some kind and the only way I can feel that is to know that others may benefit indirectly through donation of my brain to science.

Death is a difficult subject for people to talk about or think about, especially if your faith is strong in a religion, but I have always talked about it to my family to make sure that they understand how I feel.

I also understand that when you lose a family member the thought of allowing parts of them to be taken is be extremely distressing, but I try to put across to my family about how I want to help others this way and I would rather have a tree planted or a bench put somewhere.  My ashes is not who I am (or was, when the time comes) who I am will remain the memory of my family and friends, and those have known me some way.

Gerry Anderson the creator of Thunderbird donated his brain to the Brains for Dementia Research Project when he felt the drugs he was taken to slow his dementia were not working.

All I need do now is have an assessment once a year to see how I am, carry my donation card with the phone number on, and forget it.  That’s another thing that has been taken care of.

Maybe one day I may have had a tiny part in helping find answers to the how and why, and what of Alzheimer’s Disease.

Wishes

I had a call from the Research Nurse regarding the Brain for Dementia Study that I expressed an interest in.  It is to do with the progression of the disease, with a yearly 2 hour meeting with testing on my cognitive abilities, and donation of my brain and spinal cord on death.  She will send me the details about the study and will pass my name on to the Research Group at Manchester which is the area that I come under now.

This is good news because I finally feel like I am taking some control over my choices  regardless of whether I will remember that I am in this study; it is me who has asked for this.