Closing a chapter…opening a door

You can’t have failed to have noticed that I have made some major changes to my website and myself.  I feel I am closing a chapter in my life.

Firstly, I have am in transition from being married to being single.  It is not appropriate for me to talk about that, only how I am redefining my life now.  Hence the name change, reverting to my maiden name.  ‘Gill Taylor Muses’  also introduced a new chapter in my life for me.

When I was given the diagnosis of ‘possible Alzheimer’s’ my life was turned inside out, upside down.  It felt like there was nothing left for me to plan for, to look forward to, that my mental demise would quickly overtake my life.  So I began making some wonderful friends across the world who also had been given dementia diagnoses.  Instead of just having support, they have inspired me, they have all worked tirelessly to show how anyone can live well with dementia, that education is needed world wide to enable everyone who has dementia can lead a better and indeed in many cases a productive life before the end stages.  They work to show people how to understand how dementia affects people, and how to communicate effectively.  I often hear people recalling their experiences of trying to talk or understand someone in the later stages of dementia who is seemingly talking nonsense and leaving everyone confused and frustrated.  I have learnt, however, how effective understanding and communication can make the experience  better for both sides.   It is simple really, all you have to do is learn about dementia and how it affects the brain, nothing technical just relating the personality of the person with dementia with their confusion.   Random sentences such as ‘I want to go home’ can simply mean “I am confused and am not sure what is happening, please reassure me”.    So a simple reassurance that a familiar person or place is around them, telling them you are they and everything is okay can help.    No need to talk about, where home is or isn’t.   That is a loose example that may not fit every situation but knowing the who the person was can help in how you talk to them.  My own mother never lost her sense of humour with her vascular dementia right up till the end.  So to bring humour into her life when we were talking was a really important way to make her feel safe and comfortable.

I digress.  I got out my diagnosis letters and re-read them.   At the time when you receive these letters all you can see is the word ALZHEIMER’S or DEMENTIA jumping out at you.   I was looking at it, and thinking about all the questions that were asked over various appointments and tests. Q: “How long have you notice problems with your memory” – this is a simple question isn’t it.  Answer:  Always.   Q: “Yes but more recently how long has it been getting worse”.  A: Well, I have noticed it more in the past couple of years.  Actually my daughter said to me “Mum, your memory is rubbish you should go and see about it”.

Why did I answer like that?    They were pushing me to give then a date, a time, but it has always  been a problem.  I remember at University, I was 40 years old and felt so excited to be given the opportunity to study but worrying that I would find it hard to remember any of the information that I had to learn.   See, that’s another thing I have always had a problem learning new information.    I studied Combine Science; Psychology which included how we learn new information, in fact my final year dissertation was titled Evaluation of Configural and Elemental Models of Associative Learning Using Visual Lexical Stimulus  – in simple terms that means looking at two theoretical models of how stimulus enables us to learn something new, using two categories of insects and their parts, and the cognitive process of learning which belonged to which.

For me it was the most challenging of studies because it was complex, however it gave me a good understanding of associative learning.    This does have a bearing on my diagnosis and my understanding of my own cognitive difficulties which makes up the reasoning behind my diagnosis.

My experience at University was such that I would have to read, and re-read the same things over and over.  Make notes and then revise those notes because I would not remember anything in them.   Lectures were a nightmare because I could not remember what was said in any detail whatsoever, my notes were a mess lacking in any cohesive form and made no sense once I had left the lecture theatre.  Short of writing down verbatim what was being said I had no chance of remembering details.  The worst part was the lack of any memory of the substance of many of my lectures.  I knew I had a real problem but never thought to ever question it with anyone.  Psychology is a long list of theoretical models by Psychologists and dates that have to be remembered in the correct order.  Arrrggghhhhh……..yes this was a nightmare for me but I would learn them by rote learning, and by making up ridiculous sentences with the initials of their first name.

I also studied History of Science, and with such a range of subjects, facts and figures I am surprised I managed to remember anything.  One thing I have always been good at is using my imagination and lateral thinking.  A learned skill from childhood when your memory is extremely poor.   During my finals, I had an exam whereby the questions arose of things that none of us had focussed on during revision and I wrote a complete essay using my understanding of the progression of science, and one paragraph I had read in a book on Alexander Von Humbolt and weather systems.

Following University I worked in IT and was fortunate enough to have a wonderful friend (thank you Darren) who would continually give me the technical instructions that somehow I could never manage to learn.  I wrote everything down, every single detail of instructions, and even then managed not to understand them.  And when I couldn’t remember something that I had been doing day in and day out, Darren would be the one who would tell me, yet again.    He did say on more than one occasion that he had already gone through a procedure with me, but thankfully always told me again.   This enabled me to be effective in the job I had.

Finally, as I was getting older, my memory problems was beginning to be more apparent.  The most apparent thing was that, not that I was forgetting, but I had no memory of events that day or previously.  Notes I had made seemed alien to me having no knowledge of writing them, and of course the information they contained I couldn’t remember.

So….was this new or was this something that has got worse as I have got older?   Who can say after 60 years of age that they have not wandered into a room and forgotten why they are there?  Or forgotten what they are talking about midway?   Or meant to do something important but managed to forget remembering after it is too late?

Back to my diagnosis.   I had a brain scan, the scan shows perfusion (reduced blood flow) in several areas of my brain.   Medial/parietal lobes, more so on the right, and an underdeveloped frontal lobe, but no perfusion there.    The underdeveloped frontal lobe is attributed to possible brain damage due to being dropped on my head as a baby (I asked = no), or repeated blows to the head throughout childhood from my mother.    I now would like to discuss with my consultant when I see whoever it is next year, my thoughts about this.  I can’t possibly have had Alzheimer’s all of my life.    It is written and was discussed during the appointment where I was given the diagnosis of possible Alzheimer’s that I do not have DEMENTIA.    ‘Not possible’, one doctor has said to me, of course you have dementia if you have Alzheimer’s disease because it is one of the dementias.  Confuses the hell out of me I can tell you!

So here I am with memory difficulties that I have had most of my life, preparing to become totally disabled through dementia, when I can no longer relate how I am to the ‘label’ of Alzheimer’s.

Is is wrong of me to say, I have always been like this and therefore know that it could be a long long time before dementia takes hold as much it will with anybody, so until then I will assume that my diagnosis is a label that cannot be proven until autopsy.

Of course I shall still be shouting loud at the ‘Empowerment Group’ for dementia meetings, because I can!   I shall be a voice that can speak for those who cannot.  I shall still be vehemently fighting for Dementia education for all, again because I can!

I am also getting involved in the Fibromyalgia Support group because that is what is affecting me the most these days with lots of pain.

Onwards and upwards, I feel it will be an exciting year of activities in local groups.

Author: Gill

I read books and review them. Books are my escape. I have always loved books. I write a blog, I get involved where and when I can in things I feel that are important. I also have Alzheimer's Disease but it does not define who I am. I am in the early stages so you may not notice. So, I will tell you how it is.

13 thoughts on “Closing a chapter…opening a door”

  1. My dear Gill…I am incredibly impressed with this post because of it’s contents and construction, ie. big words! LOL Doesn’t sound one bit like any dementia but you and I both know how insidious this disease can be; one minute brilliant the next can’t spell a simple word to save your life! I freak out every time I cannot remember a word and self diagnose myself as having Aphasia (in all my years of schooling my vocabulary skills were always very very good) I do know that having pain issues (your fibro and my vertebrae) can put a fog on the brain firing on all pistons too! UGH! Let’s just go put on our hats and go out for afternoon tea…I could use a good cup with some scones and clotted cream 🙂

    Liked by 1 person

  2. Gill, no one whom I’ve met over these years of blogging has touched me the way you have, and no one has made me want to buy a ticket to cross the pond and have a cuppa’ except you! I’ve told your story over and over and passed some of your blogs on to friends who also struggle. Today you give me a lot of optimism and hope about your situation. Now, I have one question: HOW did you do all of the tedious work on that complicated dissertation???? How? You must be the most determined (and smart) person I know!! One of my jobs at the university is to supervise students who are writing their dissertations, and I know how they struggle — with no problems except a lack of organization skills. I’m so happy that you have “started over” — even changed your blog! You’re my hero. Nancy

    Liked by 2 people

    1. Thank you Nancy. I think I always have been determined, failure is not an option for me for anything. I hid my ‘disability’ of poor memory and learning difficulty all my life thinking it was somehow a personal failure on my part. So it is now second nature to me to find solutions to difficulties, however, I no longer beat my self up if I struggle to learn new things.

      I ended up with 4 10,000 word dissertations to write, two in my first year for my supplimentary subject of Astronomy (I wrote about what we have learnt about Venus and greenhouse effects) another for History of Science – focussing on women’s role in scientific revolutions, and then for my finals the Psychology one I mentioned, and then another for History of Science on which I focussed on the role the Mechanics Institutes, and Literary and Philosophical Societies. Gosh, did I do all that! My daughter was 8 at the time, 12 when I graduated and if I had no childminder I would take her to lectures with me!

      I would have been so good to have had my dyspraxic diagnosis then because it would have enabled me to get support to make things easier. Gosh I could go on about my struggle at University – I was assaulted during my second year by someone which went to court but being a politicians son it got ‘squashed’ so he just got a caution which affected me quite badly but I refused to take a year off and continued my final year regardless.

      I should stop here otherwise I am writing another post just for you!! 🙂

      Like

  3. What a powerful and inspiring post. You are so right about the need for education about dementia for everyone, not only those touched by it. Onwards and upwards, indeed and good luck with this exciting new phase of your life.

    Liked by 1 person

  4. Dear friend (( hugs )), here in the States they have begun using term “dementia” in a different way, and i hear that SOME specialists across the Pond are changing their usage also. In those cases, patient can have the symptoms and (diseases?) but until loss of Activities of Daily Living to an advanced state, they dont call it “dementia” … yet. In other words, patient is not yet far enough advanced in symptoms for that specialist to feel comfortable with term “dementia”. Must lose more of their ADLs before that specialist will use term. (( hugs )). Tru

    Liked by 1 person

    1. I know I sound like I am desperately denying my diagnoses Tru…think I might be. I thought I was accepting of it but I don’t think I am ready for that yet. Whilst my symptoms are very much minor I have hope I have some sort of brain damage rather than Alzheimer’s disease which will progress more quickly than I want. I think you are right that here they are also looking at the term ‘dementia’ when talking about symptoms. I feel that life is too precious for me at present to be accepting any sort of disability. Thank you my friend, I need your hugs 🙂

      Liked by 1 person

  5. Best of luck with these new challenges. Thank you for describing the experiences you have gone through and how it felt. I think for those of us with some form of dementia on the horizon, we need to be proactive about what we are experiencing, and your blog helps that a lot.

    This may or may not help, but I learned on some of ehlers-danlos (EDS) sites that D-ribose has helped a lot of people with with fibro: http://www.ncbi.nlm.nih.gov/pubmed/17109576

    Wishing you the best.

    Liked by 1 person

  6. Such an inspiring and uplifting post, Gill.
    It would be so easy to accept a diagnosis and slowly drift in to the cloud of invisible chronic illness, but your positivity and strength and desire to shine and make yourself heard are a testament to your courage and tenacity.
    So good to hear you are speaking for those who cannot speak for themselves.

    Liked by 1 person

    1. Vicki, as always I carry my ‘soap box’ with me wherever I go!! I am trying to get involved in my local Fibromyalgia Support Group also, I have been to one meeting which was good. I would like to be involved helping out with administration so watch this space!

      I have just found out that we have an amazing pain clinic here where the consultant specialises in Fibro research, so have been keeping a pain diary and am asking to be referred to him. Can’t believe that nobody has offered me anything to help with the pain before, I have always been told there is nothing but I know now there are some things. 🙂

      Liked by 1 person

Happy to hear your thoughts...

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s