health – Handbagwarrior; verbal ramblings

Alzheimer’s and living

Sometimes, on a good day, I find it hard to believe I have Alzheimer’s. I question whether I have ‘dementia’ as a symptom.

Of course it doesn’t last long the wonder and the doubt, because I looked at how confused I get at certain times, and the lack of memory intake of recent information amongst other things.

What I am understanding is how I can never be seen as totally ‘normal’ and I then think how can anyone want to be friends with me knowing that I am slightly broken? I think I have always been a person who spends a lot of time alone, feels comfortable with my own company. Sometimes that can be a sort of a silent world, when I have no radio, tv or music on. The silence feels okay and I don’t feel lonely, but I do worry that it is my way of retreating from a world that I have always felt not quite at home in. That is of course, the dyspraxic part of me speaking, but it has an impact on how my Alzheimer’s is.

When my ability to be coherent and indeed, sensible in my thoughts, ideas and speech shines it is difficult to see any brain disease. But, I know it’s there. I know my vision is currently a problem. Patterns are beginning to dazzle, confuse and mislead me into being cautious of levels of flooring. Steps where there are no steps in changes of colours, missing steps where there are steps because of the lack of contrast. This is all new for me, and quite I feel quite shocked by it. How can I mentally feel so alert and normal still and be affected by these Alzheimer’s symptoms at the same time. I am grateful that my progress is still slow and is more physical than mental. I am fascinated by all this and would love to be able to have an MRI or scan or something that I can look at and see exactly what parts of my brain have ‘holes’ now. I loved the neuroscience part of my Psychology degree and if I had the energy I would really like to read current thinking on it!

I have been reading books again which is good. I took my kindle on holiday to Cuba, yes Cuba! and read about 6 books, lying in the shade on the beach in over 30 degrees heat!

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Going through airport check in can be a problem now as they try and hurry you but I can’t be hurried anymore, the more they chivy me along the more flustered I get. I should have learnt the word for dementia in Spanish before I went! Booking assistance is a bit hit and miss and not really available/understood in some countries. However, I love travelling still and don’t want to stop until I physically have too.

I loved Cuba and its people who have been shielded from a totally consumer driven lifestyle. They are friendly and if they stop to talk to you in the streets, they are not trying to sell you anything, they just want to chat. The county is lovely but like stepping back in time in parts with oxen ploughing fields, although there are tractors too. Cubans are proud of their country and who they are and I feel deservedly so. Their political history fascinates me and I realise that I hardly knew anything about it other than the words: Fidel Castro, Che Guevara, revolution and Communism, and that says very little. We had a private taxi and a guide who was so knowledgeable and spoke with an Eton accent! He laughed telling us he had no idea how when learning English in school he managed to get his posh accent! Us British are so embarrassingly poor at learning languages, why the heck don’t we take pride in pushing languages in schools?

Being in Cuba did not present a problem for me at all, I don’t think I mentioned it to anyone, I didn’t need to. I think the simplicity of these countries do not have visual difficulties of shiny floors, fancy patterns etc. To my mind we have become like magpies obsessively attracted to a complicated shiny world. Bring back simplicity in architecture, and design both inside and out I say!

I can still travel the world making memories of being in these places that sticks in my mind and live well with the brain disease Alzheimer’s.

Food, dementia and me

Whilst my brain seems to be remarkably good still, other things about my dementia continues to ‘trouble me’. When I say trouble me, I don’t actually mean they trouble me, I mean they are not quite normal for people in general.

I think food and eating with dementia is a very complex thing, much more so than people realise, especially when you live alone. The usual questions at the GP or Memory Clinic appointments are:

Q. Do you cook for yourself okay? A. yes

Whether or not I finish eating it or not is another matter, or indeed whether I can save some of the excess to keep for another day.

I still don’t get hungry and have to look at the time to see whether I should eat or not. I could quite happily go all day without food. On average I would say that half the time I have one cooked meal a day and nothing else, the other half I manage to get a Gluten Free sandwich or snack at lunchtime. There lies another problem being Gluten Free I don’t always have any bread and everything else is a poor quick snack substitute so I don’t bother. Regulating how much I eat can be tricky sometimes, especially if there is something I really like the taste of because I just want to experience that taste till whatever it is has all been consumed. For instance I cooked a ham joint and wanted to finish the whole thing because I like the taste, I did manage not to though ! A lot of food has lost its taste for me and things I used to enjoy seem..tasteless and I can’t really be bothered to finish eating something that doesn’t have that – taste appeal.

Drinking enough fluid can be a problem although I try my hardest to drink a fair amount of water and other drinks, weak coffee or fruit teas, throughout the day. It is, for me, something that it a conscious effort I have to make.

So when you ask a person in the very early stages of dementia if they have eaten, or are they okay with cooking for themselves fine, understand that the answers are far more complex than the question.

Note: I am not managing to lose any weight so I am definitely not starving myself!!

I feel angry…

Why oh why are there so many articles about how to prevent dementia by changing your lifestyle? This Guardian article makes me go……. Grrrrrrrrrr!

Lifestyle changes could prevent a third of dementia cases, report suggests

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Before commenting, read the article please.

What I would like to say is that change your lifestyle to drink less, stop smoking, be more active, keep your brain active and it will make you feel better, make your health better but it WILL NOT STOP YOU GETTING DEMENTIA.

The research/study they must be using to suggest lifestyle can prevent dementia can be applied to any of the following:

Heart disease, Lung disease, obesity, high blood pressure, Diabetes, help with arthritis..and any other condition that being active can help with.

Articles like this make me so angry. Why? Because it gives false hope and mis-information. At present there is no cure for Dementia. Research has yet to find out what causes dementia, they are beginning to understand what is going on a bit better, but not why this happens. If they did all of us living with dementia would be on some sort of medication to reverse it, or totally halt it, and we are not.

These articles are really about unhealthy lifestyles and what can happen in the long term. So why not write that? Some dementias can be directly through lifestyle such as Korsakoff Syndrome caused by alcohol misuse or nutrient deficiency. Some dementias can develop through the result of traumatic brain injury.

Here are some REAL sites to find information about dementia from professional bodies and people leading the support, help and information sharing for dementia.

So, I wish these newspapers stopped writing this rubbish just to fill space because it is not helping.

Rant over……..

Dementia: Out of the mouths of babes..

I have just watched the most beautiful piece of film I have ever seen. I can guarantee that you will have never seen dementia viewed in this way before.

How do you be with someone with dementia? How do you communicate? Children are the sweetest gift ever given to anyone and in this film young people talk about their grandparents who have dementia and how they deal with it. If it doesn’t bring a tear to your eye then I will be amazed!

Produced by the BBC (British Broadcasting Corporation) for CBBC (the first ‘C’ standing for ‘Childrens’) this is a programme that is on air for children’s viewing times. I feel that this should be shown so that all adults can learn from children how to help their loved ones with dementia. Click on the link below to watch it.

My Life – Series 6: 3. Mr Alzheimer’s and Me

Josh, Ella and Hope all have one thing in common – they have a grandparent with dementia. It isn’t easy having to be ‘the grown-up’ when their grandparents get forgetful. But all three of them are determined to help them as much as they can. They all have their different ways of coping, which they want to share with other kids going through the same thing, and have recorded personal moments with their grandparents on their own cameras. Josh is determined to help his grandad remember and secretly gathers mementos for a memory box. Ella decides to organize a sponsored walk to help raise money for research into the causes of dementia. Hope’s granny gives dementia a character – Mr Alzheimer’s – to help Hope come to terms with it all.

29 mins long.

Living with Early Onset Alzheimer’s Disease (EOAD) my thoughts on the word Support

I though about the word ‘support’ and wondered what did it mean, or rather what did it mean for me? To start with I began to think of what the actual meaning of the word ‘support’ is. From the Macbook dictionary this is what it says

support

verb [ with obj. ]

1 bear all or part of the weight of; hold up: the dome was supported by a hundred white columns.

2 give assistance to, especially financially: the government gives £2,500 million a year to support the voluntary sector.

• provide with a home and the necessities of life: my main concern was to support my family.

• give approval, comfort, or encouragement to: the proposal was supported by many delegates

• be actively interested in and concerned for the success of(a particular sports team). fans should always support their team fully, no matter what. [Me: Activities I do with regard to bringing awareness for EOAD]

• (as adj.supporting) (of an actor or role) of secondary importance to the leading roles in a play or film. the production’s greatest successes are in the main supporting roles.

• (of a pop or rock group or performer) function as a secondary act to (another) at a concert.

3 suggest the truth of; corroborate: the studies support our findings

4 produce enough food and water for; be capable of sustaining: the land had lost its capacity to support life.

5 endure; tolerate: at work during the day I could support the grief. [Me: Understand that I do or say things that may driven by this disease and not under my control]

6 (of a computer or operating system) allow the use or operation of (a program, language, or device): the new versions do not support the graphical user interface standard.

noun

1 a thing that bears the weight of something or keeps it upright: the best support for a camera is a tripod.

• [ mass noun ] the action of supporting something or someone or the state of being supported: she clutched the sideboard for support.

2 [ mass noun ] material assistance: the bank provided unstinting financial support | air operations in support of British forces

• approval, encouragement, or comfort: the paper printed many letters in support of the government | she’s been through a bad time and needs our support. [Me:encourage me in my endeavours]

• technical help given to the user of a computer or other product.

3 [ mass noun ] evidence that serves to corroborate something: the study provides support for both theories.

4 a secondary act at a pop or rock concert: [ as modifier ] : a support band.

DERIVATIVES

supportability noun,

supportable adjective

supportless adjective

ORIGIN Middle English (originally in the sense ‘tolerate’): from Old French supporter, from Latin supportare, from sub– ‘from below’ + portare ‘carry’.

Well, from this it appears that it has many meanings whether it is used as a noun or a verb but what part of this is relevant to what I mean? I can take bits from it and make my own meaning, I have highlighted what I think is relevant to me. The origin of the words seems the best of all – ‘to carry from below’.

So now I have set out what it means to me, which part my idea of support is relevant to writing these posts?

……..Right now I have forgotten what was in my head that I wanted to write about! Oh yes…

Writing is supportive to me because it is the cathartic emptying of my thoughts and the discarding of them. Words, sentences, pages often spin around my mind in a confusing whirlwind and this jumble of words makes no sense to me until I have ‘emptied’ them out on to a page. Once I have done that they are gone although they are replaced with the next lot of thoughts. My head is NEVER empty, foggy yes, but still a scrapyard of thoughts, or worms as I call them.

DM flyer It is important for me to separate out what support means to me and I think know that is about ‘understanding’ for me. Another person living with Alzheimer’s/Dementia can understand all the little bits of brokenness that others may not see and although you ignore them, they silently eat away at you nevertheless. I am so thankful that the broken bits are small still and I can continue to live relatively normally. But, support comes from simply chatting to another person with dementia and knowing you are not alone. That type of support is a two way act; talking about how you overcome daily things, such as how to remember to take medication etc, you get different ideas and they get different ideas. Feeling alone is another part of dementia that can be there and makes no sense at all.

More and more the meaning of words becomes significant to me because the semantics of a sentence can throw me totally – what did they mean by that? Was that meant literal or metaphysically? That is where my comprehension is increasingly impaired as I am struggling to discern the difference between the two. When is a joke not a joke? I don’t always know any more. I am finding it important to have things said to me, or explained to me in simple words with a full explanation as I cannot always guess the other bits.

One of the reasons that I ‘catalogue’ anything new publicly is to hopefully educate as many as I can about the world of living with Alzheimer’s and Dementia. Maybe I feel that I am on some kind of mission, if so the very act of writing this is supporting me by getting rid of the worms in my head 🙂 I read somewhere that the need to write can be part of a symptom of damage to the frontal lobe which would make sense to me as I have an underdeveloped frontal lobe of my brain.

The second reason is that I am totally fascinated by the psychology of the disease. I can’t recall any details of studying dementia at University as part of my Psychology degree, all I can remember is studying aphasia (Wikipedia – Aphasia is a disturbance of the comprehension and expression of language caused by dysfunction in the brain). I remember sitting in the medical library at Leicester Royal Infirmary and reading up on all kinds of cognitive disfunctions and thinking how lucky I was to be able to access these wonderfully detailed books. I can recall some of my knowledge of cognitive functions and I find I can apply it to my own cognitive impairments. Should I be so fascinated by my own slow decline? Hell yes, whilst I can, I will.

Punctuation malfunction in my brain and my increasing fear of commas.

There are days when I notice my Alzheimer’s seems to be a bit worse and try to remember to record it for my Alzheimer’s Journey.

So, I will get an apology out the way first – sorry if my grammar and punctuation is all over the place but today my brain cells have gone on strike.

Cats woke us up extremely early at 6.30am – little darlings (smiling through clenched teeth :))) ), and I settled in my chair with my coffee to start reading a new book.

Right from the start I found I couldn’t understand the sentence because those pesky little tadpole commas seemed to be in the wrong place. I read the first paragraph again slowly but it really did not make much difference. As you know a comma in the incorrect place can put a totally different meaning on sentence but today for me, every comma seems incorrect.

As I write now I am having great difficulty in knowing if I am putting commas in the correct place and it has suddenly become a real issue. I have no idea why I am stressing about it so much because if I stop maybe the fear of commas will just fade away again!

I am also misspelling words more frequently. Being a touch typist I have no mental idea where my fingers are on the keyboard; I think and they transfer my thoughts by themselves. If I had to think about where the keys are or how to form words I would fail to write anything. Lately what I think is not what my fingers are typing, how can that be? It is as if the diseased part of my brain has taken on an identity of its own, one which may be a little dyslexic and mischievous. I can see words forming on the page that I have not even thought about and not even Freudian slips, but words that are incongruous.

I think sometimes that my macbook changes the words as I type and I fail to notice it which leads me on to how I read.

I am finding it really hard to read what I have written and with short term memory problems I usually have no idea what I have written minutes after writing it, so if it gets mixed up on the page I wouldn’t necessarily remember what I was trying to say. When I am reading it back I am constantly questioning my grammar and punctuation but often than not I have no idea any more if it is correct.

I gave up trying to read my book earlier and thought I would surf the net. I will read my own blogs from time to time because I don’t always remember what I have written and have a need to check that I have not made any major gaffs. So, I looked at my latest book review – Broken Monsters, and was horrified to see that it was all over the place with spelling mistakes. I am sure I proof read it before I posted it but guess now that I cannot trust my own ability to do so, which is why I go back and re-read it the day after.

It makes me feel so embarrassed to make these mistakes for all to see because it somehow makes me less literate than I used to be (was I ever that literate!).

Dementia is such an insidious disease which is less understood than it should be. As you can see I am not in the middle or later stages, but at an early stage so I am very aware of these small changes which I cannot do anything about.

Do you judge a blog by its grammar and punctuation? I used to but now I understand that it is what people are struggling to say that is more important, but are people less likely to read a blog that has grammatical errors in even if the content is interesting?