Coming to terms with an Early Onset Alzheimer’s Diagnosis

How has my diagnosis affected me?

On a personal level, quite a bit. My father always worried that he would develop it the same way his mother did and that imprinted on me somewhat. My Dad started to decline and the familial aspect that I may have this on my horizon was more present. In a similar way for families with recurring cancers and heart disease would.

When the clinicians at UCL in London confirmed my genetics and advised that I was all but certain to develop Alzheimer’s it wasn’t a huge shock or surprise but, a bit like a ball rolling down a hill, the reality took a while to set in and it went on for a good two years before I was able to move on.

It’s a weird irony in that when you’ve been given a diagnosis like this you feel it’s the only worry you have now and that you’re suddenly immune from Cancer, Stroke, Heart Disease and that if you were to jump off a clifftop you’d bounce. This isn’t the case so the knowledge that other things may get you first are…. in a way, reassuring, but on reflection of all the things to end me I’d prefer it to be Alzheimer’s.

The knowledge of my situation has given me a target of longevity most people aren’t gifted with and I can make plans, achieve goals I procrastinated over and with the help of research, take a stand against the disease to help stop it getting other people in the future.

But yeah, it took two years to get to a point where I was fed up with the fear, the worry, the existential crisis and sadness. I saw it like this…. The disease wasn’t here yet but I was giving it early access on my life and to be frank, I didn’t want to give it that sort of power. Its time for me will come and I don’t want to feel hard done by anymore than I can help when it does.

The knowledge and fear of this disease was hiding around every corner and following me like a shadow everywhere I went and I got sick of it so I refused to let it. Now when I’m in the MRI looking at the technicians in the control room through that periscope thing that lets you see your feet I’m addressing the disease in my mind thinking ‘You should be scared of me, I’m coming for you’.

There were ways I tried to cope initially and one thing I regretted was telling people.

It still served a purpose but in a superficial world people aren’t geared to cope with this. When someone asks how you are, responding with ‘I was in hospital on a drugs trial’ leads to querying why, then you tell them and it gets awkward.

Generally people are geared to a ‘Howdy, how are you’ and the answer is ALWAYS, ‘fine thanks, you’?

When I have told people, the number of which are numerous, there is no way to lessen the impact. To most people, Alzheimer’s disease is pretty fucking serious and arguably the worst disease to get (I don’t agree with this, that’s for another blog post). You may as well say someone shot your dog.

That being said, the above can be expanded into a method I found that did help. Talking about it.

I know I know, yeah don’t drop the bomb on people unannounced but to those in the know, your family, your researchers, etc it forms a good pattern of behaviour much like CBT (Cognitive Behavioural Therapy).

Over the last few years my approach to how I feel about my condition has changed and how I see it and my future outcome has developed, softened, changed with the months and that is purely based on my talking about it with others. The constant repetition of how I feel has reinforced that feeling and much like how Chinese Whispers work I made little tweaks to my story as I’ve come to terms with things and in the appearance of new information as it presents itself.

As a result I’ve written my own narrative for this disease, one I’m comfortable with and that I can accept. Then the healing starts.

The problem I’ve found is that even though I’m cool with me others around you suddenly become hyper-vigilant. I feel any medium level mistake I make is a worry for others, like they’re waiting for their fears to be confirmed but that’s their problem. I can forgive this as where I’m forced to deal with this directly they’re off to the side experiencing it. It’s cool, I understand.

I’ve also been buying back time. If this disease is going to shorten my brains lifespan by 10-15 years how can I hack my current life to claw some of those years back? I waste less time now. I’m more impatient, I’ll partition my work into a much smaller timeframe. Less procrastination, with more utility.

I’m also appreciating life more, the sky is bluer, I like smelling the rain and I savour family more. I’m no longer wasting time. This condition isn’t a gift but the knowledge of it is. Some people in this world drop dead without warning. Those folks never have the insight of a terminal condition, the rebalancing of their priorities and the enrichment to the soul that it brings.

Lastly, it could literally be worse. I’ve seen some family members die within 6 months of a cancer diagnosis, 40 year olds dying from a stroke, people whose mental state was so bad they took their lives, I know two people with (or had) ALS and those who lost mobility due to a blood clot.

Yes, granted, I / We are not those people however nobody gets out of life alive, something gets us and I feel privileged that I’ve been given a decade heads up and a fighting chance to do something about it.