Well now, what’s new?

Gosh it feels like ages since I have written and posted anything.  I am quite busy these days and need to get some time to sit and read, and also write.

Early December I lost my Dad.Scan 9

At 94 his heart simply stopped.  He was at home and had lost the reason to live after my Mum died last June 2015.   It was a sad time for all our family arranging a funeral for the second time in six months.   Now we have the hard task of working together to clear the family home, I don’t need to say how difficult that is.  We all miss him so much.

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So what else is new….well the biggest thing is that I recently tried to join a research trial for a new drug for dementia that has had some remarkable effects.  So I was keen to get on to the third phase.  Along I went and carried out the initial memory tests to see if I was eligible and was not really surprised to find out that my memory was too good for the trial!  Over time I have been feeling that my cognitive abilities have indeed improved and I discussed it with the researcher.  I have now been taking Rivastigmine medication (Exelon) for the last 2 (or is it 3 years?) and it has certainly improved things for me.  I have also worked hard in trying to keep my mental abilities active, by reading, writing, playing scrabble, sudoko and the like.   I think it is great news.   There are times when I know people have questioned their diagnosis (or others questioned the diagnoses of someone) when they do not appear to have any great cognitive difficulties or have improved.  It is very unsettling when someone has a diagnosis of dementia then told they do not have dementia because the symptoms have improved some what.  People want a reason for their cognitive difficulties.    For me, I would love to have a different diagnosis, ‘So sorry we made a mistake you don’t really have Alzheimer’s those empty holes in the blood flow in your brain scan was just a smudge on the camera lens’  and I still wonder if brain trauma looks the same as Alzheimer’s in a scan, but then know it is likely it leads to the same thing.  I even thought of trying to get a different diagnosis, perhaps downgrade it to MCI (Mild Cognitive Impairment) which I already have, but the reason for it was diagnosed as Alzheimer’s.  It all seems so complicated and simple at the same time.  What does it matter anyway – well I will tell you how it affects you.  I have to first remind you that I do NOT have Dementia, yeah yeah I know that Dementia is a symptom, but it is also a disease, and Alzheimer’s is classed under that.  You still with me so far?   Ok so having been told before by one GP that you cannot have Alzheimer’s without dementia due to it being a dementia, I have Alzheimer’s disease without dementia.  That fact still remains true at present unless anyone else can interpret my scans differently.    Holiday insurance: did you know that you cannot get a yearly insurance if you have a diagnosis of Alzheimer’s?  No matter that I may have only mild cognitive impairments, it is the word Alzheimer’s that is the crux.  I guess if I said my diagnosis is MCI then I would be able to get it.  I can get individual insurance for each holiday so I am told but at a greater cost.   (I have just booked a trip to Alaska with my daughter in August which we have been saving for! )  Driving licence:  I would have to apply for each every year with my doctors confirmation that I am able to drive.  I have however had to surrender it because my attention  is too poor.   Yet someone with ADHD, are they able to hold a driving licence I wonder?  Suffice to say the word Alzheimer’s in itself is a barrier to a lot of things regardless of the level of it.

It’s great though that my cognitive abilities have improved and I hope it will remain so for many years to come…….

I am involved in my local YPWD (Young Persons With Dementia) group and join in activities locally.  We had an arts and crafts course before Christmas which was fun, and since then it has been furniture up-cycling – something very close to my heart as I have furnished my flat with old furniture and am up-cycling it bit by bit.  I am really enjoying doing it and discovering what my style is!

On Monday I shall be speaking at the Berkshire Dementia Action Alliance Meeting.  When I was asked I felt a bit of a fraud but then I am more than capable to talk about how it was when I was diagnosed and what I have been doing since to keep my brain active – use or lose it as the saying goes, and how to make sure that I remember everything on a daily basis.  I can talk about how I still fear the future – when I allow myself to.   Also speaking with me is a guy  who is another member of the Newbury Empowerment Group so we know each other.   So I am trying to put together some notes for that.  Will let you know how it goes.

Next, I have been asked to be part of local nurse training giving information about early diagnosis and my experiences.  I can not only pass on what I know, I can also give them lots of information that they will not have even thought about!   I am so pleased to have been asked and can be a voice.  Not sure whether that will be by video or a talk.  Looking forward to being involved with that.

I have had some very small involvement in the West Berkshire Neurological Alliance, which is an excellent forum.  I regularly attend the Berkshire West Therapy Centre using their exercise machines to keep fit in a way that helps my Fibromyalgia.  It is such a unique place with only one other coming close to it in the country, I help out with raffles, and will help when they move premises on 1st April.

This year is already turning out to have the promise of lots to keep me occupied!

Alzheimer’s: When prosecution of child sexual abuse is unable continue due developing Alzheimer’s

Before I start, I must state that this is my opinion only.

Lord Greville Janner has allegations going back to the 70’s for child sexual abuse when he was an MP in Leicestershire, UK.   It is said he befriended manager(s) of children(s) homes for access to young children.    I remember one case in particular regarding a children’s home in a small town where I used to live.   A friend of mine worked there and gave evidence during the court cases when it was first investigated.

Greville Janner’s name was mentioned way back and I am not going to go into details because you can read the facts in the news today the evidence regarding whether he was involved in child sexual abuse, and the failure of the CPS to bring him to court on several occasions.

The Crown Prosecution Service has deemed him unfit to bring to prosecution because he is living with Alzheimer’s disease.   So the case will not go any further meaning those adults who are living with the heritage of being a victim of sexual abuse at one of these children’s homes will never be able to see justice.

This is a very emotive subject, but one I think that is important.  Without the recognition of a court judgement, will these people feel betrayed by the justice system?

Lord Janner may be unfit but if there is a case for prosecution, surely he should lose his title?  As a Lord he remains to sit in the house of Lords, Alzheimer’s or not.

Surely having Alzheimer’s does not absolve someone of previous crimes committed against people, unless they are not able to mentally distinguish right or wrong at the time of the crime.

Is it right to let them off?  Should they still be prosecuted even if they are unable to serve a sentence.  For the survivors of the abuse it would mean a public acknowledgement of this man’s crime towards them.

I feel very strongly about supporting survivors of any crime, because they need our support in a world where justice may seem very cruel at times.

My personal view is that yes – he should be prosecuted because I refuse to believe that his memory of his whole life in the 1970’s and 80’s has been forgotten.   I can also see on the other hand that this would also be very difficult to do.

This is not an easy debate to have but one which I feel must come.

The importance of ART and MUSIC in dementia

All places where people have to visit, or where they live such as care homes or in their own home should be places that are bright and homely.  Seeing pieces of artwork or hearing sounds that they know may promote something that they have been interested in.  It is important for music to be played at times with classical, pop, folk, country (not just a radio stuck on with a channel that the staff think will do too low to hear,)  and then add some quiet times.  When music is important the type of music is also important and a whole range of music genres.

It is becoming well known that music is important to people with dementia stimulating some memories, and obviously that music has to be appropriate to each person.   In fact we all have different tastes in about everything there is; music, colours, clothes, books, places – the list is endless but you get my drift.  My interests include psychology research (because I took my degree in psychology and learnt that the mind and brain is truly fascinating, even if I struggle to remember what I learnt).

I came across this article on art and thought it made interesting reading, because I believe it has a bigger picture to offer us (excuse the pun there!).

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Night Geometry by Jack Vettriano

Basically is shows that seeing art on the walls in a gallery have a more powerful effect than being shown a photo of a picture.   I love art and there is nothing better I like than seeing a piece of art on a wall somewhere, not just in a gallery, but anywhere.  Art with meaning in a cafe, shop, corporate building, or someone’s home.  I have my own collection of art  by various inluding a signed prints by artists Jack Vettriano (Night Geometry), and Susan Howells amongst other interesting artists.

Not So Fast Please
Not So Fast Please

I am not a keep lover of some of the meaningless pictures you can buy in any high store depicting the fashionable ‘picture of the day’ such as a photo of a white flower pot with coloured plant in etc.

How does all this to relate to this article?

I think that ALL of these public and private places should be respect the cultural differences and display a whole range of good ( I reiterate that) GOOD artwork on the walls of these establishments.  Nothing wrong with good prints in decent frames.   Lets see some decent artwork around.    People with dementia may have been art lovers too.

So people working in care homes around the world, take a step back and think about what it is you would like to hear and see around you.

Just saying…..

Review of my Alzheimer’s of 2014

Looking back on last year I think I have become more settled with myself. I am very proactive in looking for solutions for difficulties I have and not worrying too much if I don’t find a solution. Here are some things I think might help for people with dementia.

• I use a calendar to record everything, (as much as I remember) even writing on the notes section when on the phone and recording information I know I will forget after the phone call.
• A blackboard in the kitchen is vital when I run out of something as I write it down immediately, and photograph the board when I go shopping.

There are lots of ways to help yourself when you have dementia, and also to help others who are living with the disease. I found a great idea recently when I was reading a crime thriller. Yes, really! The main character had brain trauma which affected her short term memory, so she started to develop strategies to help build a memory database by using her mobile phone to photograph everyday things and writing a description. For instance:

new doctor: photo+name.
New appointment: take a picture of the building and label it so you can see where you have been.

How many times have we been to an appointment or an event somewhere and not been able to remember the building, or even match the building with a person who I am seeing. I get confused with who is where, and who is what service! Yes it’s an easy mistake to make but when you keep making them it gets kind of stressy. Taking a photo of the building and the person could make things easier – obviously you’d have to ask their permission to do a mug shot.

What other challenges have I met last year? Well, it has been a tough time for both my husband and I coming to terms with my diagnosis. However, he has been trying very hard to understand when I repeat something, or to explain when I can’t understand a simple sentence without getting irritated. It takes the patience of a saint when someone with dementia is constantly asking what you mean because they can’t process what you have said.

I am trying to do as much as I can to keep myself mentally healthy. Okay I know the day will come when I am unable to keep my own control on everything but hopefully I can have a good number of years before that happens.

Getting things sorted is getting harder. As you might know from my book review blog I receive books from publishers, read them and write reviews, easy right? Say what I like about a book – no sweat.  Wrong: even though I know why I liked a book putting it down in words gets harder and harder. Firstly I have to motivate myself to start writing, next comes my thoughts, but that’s where I have to really push myself. I love writing, I love words, and I love books, so why does my brain become tongue-tied when I attempt to write it for the publisher?   This really is hard work for me but I will not give in, my encouragement is the odd email from a Publisher or an Author thanking me for my honest detailed review.

Travel – I no longer have my driving licence, and I miss it like anything. Could have I carried on driving? Possibly, but really my attention is not always great now so I would rather be safe on the road than sorry that I caused an accident. I am now becoming a train and bus traveller – alone I might add! You bet I am terrified before I travel, and stressed whilst I am travelling, but so proud that can still do it.
I have downloaded a LIST app to my phone and put in every detail of my travel details, departures, arrivals, times, places, other information etc etc.
So far it has worked. Travelling to London and then across via the underground can stress out even the most season traveller, but I have learnt to be single minded follow my instructions. If, like my last journey, all the trains ceased to run out of any of the stations I was travelling from, I managed to negotiate with any official looking person in a Network Rail/British Rail uniform on which train I should be. Oh yes – bring it on (actually it was really stressful but I did it). A simple journey is no longer simple – see my last post.

Next
Socialising – I find myself wanting to be in large groups of people less and less. I might of want to be with groups of friends before, but now it somehow fills me with apprehension. What has changed? Too many people means I can’t always process what people are saying, combined with the fact that I don’t always get jokes. When everyone is laughing because someone has said something funny and I have no idea why, it can leave me feeling outside of the ‘group’.
Hearing – I am finding it hard to process what people are saying, even though what they are saying might not be complicated. Also, if more than one person is speaking I have absolutely nil chance of hearing one voice! One person speak at a time please. I am no longer willing to meet people in pubs anymore because there is too much noise for me to hear only one voice. It is like being deaf in a sea of noise.
Vision – Definitely need several different glasses but doesn’t everybody as they age. Some days when I read the lines on the pages are wavy, or they get smaller on one side which is to do with my Alzheimer’s. Or sometimes I cannot understand the sentences on the page and have to stop reading.  My perspective is worse I believe. I can look up a road and not be able to work out the perspective of the street, houses and pavements are. Another reason I don’t drive now.
Memory – Apparently goldfishes have more than a 7 second memory, unlike myself at times! I think my memory remains in the same state thankfully, somethings I am ok with, some things I have no memory of. I recently received a copy of a letter from my consultant Neurologist, with information that I agreed to phone her after six weeks of our appointment to discuss my medication. I have no memory of that conversation so obviously I haven’t yet phoned!
Communication: I met an online community of people living with Dementia who have inspired me to try and get involved in bringing awareness to the realities of living with this disease. That is my most significant undertaking ever. So roll on 2015 when it starts.

The thing I have learnt the most is that I STILL CAN attempt to do anything I feel able to do, but I don’t beat myself up when I fail.

My Dementia Dreaming

Adventures with friends!

My dreams are becoming more complex.  They are not scary, but they are so involved it is like watching a film.  It is not like seeing snatches of scenes but whole segments of an ongoing story.  It appears that I am weaving people, bits of television programs, reality and events into fantasy all involving myself into a nighttime world that I step into.  I have caught trains, been in airport terminals, I have been pregnant, built houses, had adventures, travelled with friends and companions I have never known before, with my friends who bear no resemblance to their real selves, and all in 3D and colour!

The dreams are relentless each night, and sometimes leaves me mentally exhausted in the morning, without the ability to retain the memory of the details of them.   I simply wake with my daily head pain, my brain stuffed full of mental activity, which by the time I have made a drink and takeDreams or realityn my tablets and ease into the day, dissipates.  But I know one day they won’t.

There is no real point in trying to work them out because they are garbled meanderings that have no meaning.

from_machination_of_dementia_series_by_lukaszwodynski-d5lssdw.jpg-142250I know that they may get worse, and hope that they do not develop into nightmares, common with some types of Dementia.

 

The problem with dreams is that as the disease progresses they become mixed up with reality.  I have had odd flashes of thinking of something and wondering whether it was real or did I dream it?  Did I talk about that to someone?  Did they tell me?    I don’t want the day to come when I am awake and the dreams are still real.   I mean that the people in my dreams are there in my waking, or the events in my dreams are part of the reality during the day.   When the day comes when someone starts arguing with me that what I have just told them is not real it will be sad.

Reality of Alzheimer's

So just don’t argue with me, I want to say now, my reality is not the same as yours okay!

The feelings of anxiety and TV commercials 😬

charlieanxiety

Recently I felt anxious, not for any particular reason but for its own sake.  Alzheimer’s anxiety?  This is not the first time I have experienced it but let me explain what I mean.

Back in the 70’s there was a slapstick program called ‘Some Mother’s do Ave em’  (1973 – 1978) about a character called Frank Spencer, his young wife Betty and their baby.  Frank Spencer was played by Michael Crawford, his wife Michele Dotrice.  The character of Frank was accident prone and was constantly destroying things, his tolerant wife would just sigh and say ‘Oh Frank” in a wistful way.  He appeared so clumsy but was so innocent as he managed to get himself into another scrape whilst looking for a job.  I identified with him, being a ‘clumsy’ child myself (through dyspraxia) but instead of gaining sympathy in my clear lack of bodily coordination I would get a verbal and physical chastisement.  Yes, this explains why slapstick comedy makes me anxious but does not match my experience of anxiety with some everyday things and events.

NoiseThese bouts of anxiety comes and goes, but when it comes it affects me totally.   I wake in the morning with my head pounding, the muscles in my face taut and tense, pain completely engulfing one side of my head and face, the right side.  I am in so much pain I feel sick; migraine maybe, but not every single day, so no.  I try to relax my face easing the pain in my muscles being screwed tight.   Of course I have asked the doctors over the past few years why I get this pain in my head, it’s not normal is it, but so far no one has ever tried to find out why.   I think this is because I seem to have other things not quite right and so they focus on those first and never get round to sorting out the pain in my head.   At this point noise; sounds outside, inside, talking, bangings etc all make me feel more anxious and make me want block my ears.

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I digress, because this is about being anxious.   Lately as I say, there are certain TV commercials that make me feel very anxious watching them.   At present there is a commercial on television about an energy company, showing an orang-utan walking through streets of people, looking through shop and office windows, at light bulbs and people being together.  There is a blank expression on this orang-utans face: absolutely nothing.  What do I see when I watch this commercial?  I see the pain of an ape being alone in a strange place, his environment destroyed to provide something shallow and artificial for humans.  There are no other apes around, there are no trees just streets, buildings and lots of artificial light, he is lost and there is nothing left for him.  The last shot is of him is swinging on a street lamp, then it cuts to the name of the Energy company.  All the while I am watching this I feel anxiety building as I see all hope slipping away for the animal.  It builds so that it makes me want to roar in pain.   This is not the only commercial to affect me so physically and all are seemingly innocuous.

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People without patience getting visibly frustrated also makes me anxious, it doesn’t matter if they are throwing things about in irritation, verbally expressing their frustration, impatience on the road driving, or waiting their turn in a queue and it doesn’t matter who it is.   My anxiety builds silently until I want to shout for it to stop, stop, stop!  At these times I need calm and silence, so I silently withdraw into myself like a Buddhist monk in meditation.

Seemingly small things make me anxious and just know some inward silence, blocking out the world helps.

This all sounds quite dramatic but in reality these thoughts are well worn and fleeting as I activate my strategies to focus on something else and writing helps, even if it is about being anxious.  I try to get rid of all anxiety as soon as possible and peace resumes inside my head.

And breathe…..and relax…….

 

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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……