Tracey's story

My name is Tracey, I am 46 years old.  I have been diagnosed with young onset of Alzheimer’s disease and Posterior Cortical Atrophy which is another form of dementia.  

I was diagnosed in 2015 after a long fight to get anyone to believe there was anything wrong.  In 2014, I was starting to fall over a lot, I think I fell over about 30 times in that year.  I mentioned it to many people but I have always been accident prone and I was told that I was being more of a klutz than usual.  So didn't think anything else about it.

Towards the end of 2014, I was starting to forget how to spell certain words, write numbers down and I got concerned slightly.  I was working as a community staff nurse and we have to fill out data to prove that we have seen patients in our working day.  This data is mostly numbers and I was getting behind as I was finding hard to remember how to.  Then I went with a colleague to do a syringe driver and I couldn't remember what to do.  But I just thought I was under stress, although I hadn't really forgotten anything before. 

Not knowing what was wrong

In 2015, I fell over in January, February and in March which was my last bad fall.  I fell and couldn't quite get up.  I couldn't remember how, someone helped me and wanted to call the ambulance but I was working so went back to work, then couldn't remember falling over afterwards.  In May, I went into hospital because I was having a variety of symptoms, pins and needles, slurred speech, found it hard to walk, falling, memory lapses etc. I thought I had MS.  The hospital thought I’d had a stroke and my doctor thought I had a brain tumour because all the symptoms were the same for each one.

I had a CT scan and a MRI of the brain and both came back clear.  Bloods were taken - all clear.  I saw a neurologist who told me he didn't know what was wrong, but thought it may be atypical migraine and put me on tablets.  But he also told me that it could be stress related or maybe depression.  I asked him if my memory would come back.  No answer. 

Getting a referral to the memory clinic

So I went back to work, went out with another colleague to learn how to use a new machine.  My memory used to be hot, show me something once and I would pick it up.  After a week of showing me, I still couldn't remember how to use it.  And she said something like, ‘There is something wrong with you.’ I spoke to my boss about it and my doctor but they both just believed I was under stress, although my boss did suggest being referred to a memory clinic.  My doctor was not helpful at all.  So I saw a different doctor who did refer me to a memory clinic.  I failed the first memory test, and then the second memory test I had two months after the first one.

I saw my consultant in October 2015 who told me he thought I had Alzheimer's disease, but wanted to get bloods and others scans done first to rule anything else out.  In December 2015, I got my final diagnosis.  I had a SPECT MRI which showed brains cells missing from the back of my brain and the right side of my brain. 

The relief of knowing what was wrong

I felt relieved to be quite honest.  It is always better to know rather than not.  You always think of the worse scenario when you have a condition but when you live alone you have to think positive and adapt.  I won't let this dementia beat me just yet.  I have told my consultant that I want to have at least 20-30 years ahead of me before I go potty.  Most of the time I forget I have dementia, then I get tired, then remember.  The brain has to work twice as hard as a normal brain so it’s tiring. 

I always tell people not to give up.  The brain needs stimulation so I try and get a happy medium by going to groups, going out with friends and family, playing games, I bake cakes.  I write poetry now, and write my blog, which I suppose is my way of keeping a journal.  I retired as a nurse in May 2016 and stopped driving before that.  I love my life now. 

How I live my life with positivity 

There are four rules of thumb that I try to abide by –

  • Learn to adapt
  • Try not to stress out about things you can't control
  • If you have a bad day, well there is always tomorrow, and tomorrow will be better
  • Always retain a sense of humour because you will need it. 

I used to see patients give up too easily when I used to look after them especially after receiving a diagnosis of a condition.  Then they would die.  Life is for living to the best of your ability and not giving up.  Sometimes it is hard to fight and I get tired of it but I am more scared of losing so that is what keeps me going. 

I lost friends after my diagnosis but the right ones stayed by my side, and I have met lots of lovely new ones. 

- Tracey lives in Folkestone, Kent.  You can read Tracey's blog here.  

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