“The End Game”

Sir Terry Pratchett

I wanted to watch the TV program:Terry Pratchett’s Jungle Quest – Documentary about orangutan conservation shot on location in Borneo.

It was as much about orangutan conservation as the man himself living with Alzheimer’s Disease (AD). Because he is lucid, I needed to feed on his words and experiences of the disease. I read the article below in my quest to know how others experience their own demise. http://www.dailymail.co.uk/health/article-1070673/Terry-Pratchett-Im-slipping-away-bit-time–I-watch-happen.html

There have been several quotes by Terry Pratchett that I can identify with.

“It occurred to me that at one point it was like I had two diseases – one was Alzheimer’s and the other was knowing I had Alzheimer’s.”

This is probably the quote I that strikes me most. Knowing you have Alzheimer’s is like being secretly give the date of your death and not being able to stop it or control how you will move towards it. It is like watching yourself in an out of body experience and not being able to intervene. The main thing is that nobody around you can imagine for one second how devastating it is to understand, and feel your own mental cognitive breakdown.

“There were times when I thought I’d have been much happier not knowing, just accepting that I’d lost brain cells and one day they’d probably grow back or whatever.”

“You can’t battle it, you can’t be a plucky ‘survivor’. It just steals you from yourself. “

“One of the first things to go was the touch-typing. Kind of a bugger , I thought.”

Pratchett has posterior cortical atrophy (PCA), a rare form of early Alzheimer’s, which affects the back part of the brain responsible for recognising visual symbols.

Reading the words of Terry Pratchett strikes a chord for myself, I too feel the same, and noticed my touch type ability failing. The difference of him between 18 years, is striking because it highlights the loss of his mind now.

He has talked about the fact that people talking to him would not know or understand what was wrong with him, if anything. Being coherent does not appear to match Alzheimer ’s disease, but it is the beginning. It will change. He ‘came out’ to the world about his diagnosis which contravenes the way we usually treat the disease with embarrassment. I feel embarrassed about everyone knowing I have Alzheimer’s and will deteriorate over time. I am not sure why I feel shame about my friends knowing. There is part of me that wants to say it out loud, and not worry about how they will deal with it.

I had a difficult conversation with my brother the other day which was family related and which left me feeling sad. Because we live far apart I emailed him and said that ‘I know I sound ok, I am not ok’. It is hard saying it, and admitting it.

Terry called his AD ‘The End Game’. I guess this is my end game too now.

Terry continues to write, to tell the stories that imagination has always built inside his head. I applaud the way he simply gets on with it. I still have dreams of what I want to do and will endeavour to do them.

Fun at the Top Rank Suite

Teen days at the Top Rank Suite

I filled my childhood with fantasy. I escaped inside my head into a world of intrigue, Wildlife, dragons, Russian forests and rivers. I was never a girlie girl so fairies and such never figured big in my world. From birth my mother dressed me in blue and my sister in pink, I was never allowed to have pink. My sister of course would tease me constantly that I was a boy because of this. In my teenage years I grew to like bright royal blue, but never wore pink. My favourite colour was yellow which went well with my darker skin and long jet black hair; my Welsh colouring. I had a bright yellow crimpelene, all in one hot-pants suit, which had short sleeves, a zip down the front, a wide belt and shorts. I wore it with shiny orange patent shoes and thought I looked fabulous which of course I may have! I remember wearing it to a party somewhere; that was the night I told my boyfriend Duncan that I was going to a Sunday school teachers meeting, but joined a group of work mates from the Top Rank Suite (Club) where I worked at night in the cloakrooms, to party. It was fun and I eventually arrived home in the early hours of the morning to a reception of an angry mother and father. They said they had no idea where I had been, had expected me home earlier, they had asked my boyfriend where I was, and was shocked at his answer. The only thing I could think of was what excuse I would give Duncan. Why they were concerned this night was strange because three or four times a week I would get a bus into Southampton, work till 2am which was the time that clubs stayed open till back then, and would be taxied back home. I would arrive back home around 3am but being used to me coming home various hours nobody would notice what time I got in, even after going on to party which I did at times!

The Top Rank was the nightclub to go to in the 60’s and 70’s. It was a venue Where some of the big groups played (other venues were Southampton Gaumont, and ?), some meetings for the Ancient Order of Foresters which was cloaked in secrecy and only a select few chosen to work on those nights. It had two dance floors, the main one was large with a stage. with a large balcony area around it with bars and was filled with tables and chairs on both levels. The second dance small dance floor was on the balcony where you danced on glass tiles with coloured lights underneath. On a Tuesday was ‘kiddies’ night, 16 to 18 years olds, and was from about 7pm and closed at 10pm, after which the small dance floor opened for a smaller number of people to dance from 10pm till 2am. Sometimes if I worked the early shift I would change and join the evening session socially and remember one particular night when a beautiful black guy called Reuben chose to dance with me that night.

Change; it is uncertain in its nature especially if control is in the hands of others.

…23^rd March 2013

I have a call from the nurse at the memory clinic, but she starts with the fact that I live out of the area and they will refer me to somewhere nearer. This is a bit of a shock as both SP and Prof L were ok with the fact of where I am, especially as they messed up so badly by forgetting me for two years before arranging for the scans and assessments needed. I feel both upset and angry, not only have I run out of medication, she has not yet found out whether they can supply lactose free. She gave me a response that the pharmacy had to contact the manufacturers to find out the ingredients. I told her that there is a good website that lists all the UK manufacturers of generic medication and that Rivastigmene hard capsule, is the only one that does not have lactose as a filler.

She was also supposed to get me the paperwork for donating my brain for research. This may not be important to her but it is very important to me. I have now become ‘throw away’, a name on a record file that is ‘out of area’ and therefore not budgeted for, passing the cost to a different health authority. I fear moving hospitals, another set of doctors, and nurses and buildings, and departments.

I have been told not to continue with the Rivastigmene patches, (cholinesterase inhibitor). I only have one patch left anyway. Now what, will my memory decline worse than before? All of the instructions and information states not to stop medication, they indicate that the fog may come back with vengeance.

The last patch – today I took off yesterday’s patch, put it back in the packet, and handed the box with it and the unused one to Mr Hs to burn. The patches must be burned or handed to a pharmacy to dispose of. I will not miss the itching of the patches which have given me a bad reaction to them. At Hydrotherapy this week, the therapist asked me if I had been paintballing due to being covered in angry red marks the size of a two pence piece. Hopefully these will now stop itching and will fade in time.

Where have all the ditches gone?

Driving around the countryside I was thinking about the recent floods that turned the fields into lakes forcing livestock into small corners of slightly higher ground. Lakes that have ruined the winter crops for the farmers.

We crossed the Swarkestone Causeway which was built in the 13th century to cross the river and its surrounding marshes. It is the longest stone bridge in England and is listed Grade I. The marshes have been turned into fields over the years, but retain a large pond area at the end of each field near the bridge. The ponds where the ducks swim and live amongst the reeds are usually full.

This got me thinking about managing land and farming throughout history. Have you noticed that the ditches have disappeared? Hedgerows have been ripped out to increase the areas of crops and grazing. I remember as a child ditches being waterways for water, we would play in ditches, jump across ditches, and accepted that there were ditches everywhere. I have grown up with ditches being drainage channels, so how come farmers these days fail to maintain them. It seems to me that farming has become ‘industrialized’, taken from the farmers own hands and given back to them with the ‘new methods’. I know that I do not have the experience to judge how farming has moved away from the land towards textbook working, so can only state what I see and how I think about it. Some hedges are not maintained and grow up into sparse bushes and trees that no longer form a firm boundary. Ditches are no longer cleared each year allowing the water to drain, fill and flow. I don’t know how much these things impact on waterlogged fields but maybe they help towards drainage. I know the impact on wildlife has been high, with the loss of habitat. Ponds, and ditches, have been part of our landscape for a few hundred years before land was taken from the commoners and given over to private ownership filling in the ditches to increase their productive area. Ditches around alongside the hedges remained and were maintained.

How has modern farming changed the usability of the land in light of weather changes outside of our control?

A few ditches have been dredged but not enough, rivers have not been dredged and left to silt up so that water draining off the land raises the level of the rivers which burst their banks.

When did we stop managing the land that has been managed for hundreds of years. Do we feel we know better than the simple farming people of history?

As I say, I these are only my observations and thoughts without expertise.

Just another day…

I woke up having slept heavily (apart from the usual 4am check the clock time) but did not feel refreshed. I have pain in the back of my neck and still feel exhausted. My Fibromyalgia is still bothering me.

Thursday I have an appointment at the hospital for a check up on my eyes. I am tired of all these appointments, I don’t want to go and sit and wait my turn, talk to doctors, then leave with most of my day gone. Good news though I am being referred to the Glaucoma nurse for check-ups rather than the consultant because my eye pressures remain static with no damage still. This means it is only once a year and one thing I do not have to worry about, yay!

Quick shop locally, then home …please, as soon as I sit down I am out and slept until 5:30pm.

I wake on Friday with the back of my neck and the side of my head painful, I lack energy and am hoping we can stay in as my batteries are empty and I need to try and recharge them.

I think about Tuesday and chatting with my Daughter but cannot remember what we talked about, I wish I did because I would like to write it down. I remember how it felt being with her though 🙂

8th March 2013 – A most bizarre appointment!

We went to Croxall Lakes for a spot of bird watching and photography where I managed to get rather blurred photos of a white Egret, Shelducks, but some interesting photos of a misty distant gravel pit workings. I also got my first photo of the year of wild crocus albeit a little blurred. I really need to learn how to use my camera which is more difficult for me these days as I can’t seem to retain new information.

I had an appointment with Occupational Health arranged by work as a stage towards early retirement, which was indeed most bizarre. The Doctor reminded me of a meerkat but slower. His speech was void of any superfluous words apart from the continuous “thank you, thank you, thank you” indicating that he wanted me to stop speaking. These were muttered under his breath barely audible but unmistakable. He was only interested in answering the questions that was in the letter from my work. The only ~~difference~~ deviation was the form he thrust in front of me to fill in. I looked at it and said ‘this is for extreme depression and I am not depressed so there is no point in filling it in’, he seemed a little thrown by this and proceeded to ask me questions reserved for depressives regarding self-harming and suicidal tendencies. Now, the reason for being there was to start the process for early retirement but for this Dr, he was only there to answer the questions in the letter from work and nothing else. He typed the answers with me sitting beside him and I could feel his discomfort with my proximity, and as we all left we shared the lift where he silently kept his gaze straight ahead barely acknowledging our presence. I cannot imagine this Doctor ever being able to work with patients with his total lack of empathetic connection with people. In a copy of the letter which he emailed to me, he has asked my work to give me my options for early retirement! I fear this will be a long process due to their minimalistic human resources.