It seems I can no longer declare that I'm "suffering" from dementia. Instead, I'm meant to say that I'm "living" with it. Beats me what difference all this PC stuff is supposed to make? It's still Alzheimer's regardless of how I or anyone else choose to describe the situation. As far as I'm concerned, Alzheimer's disease is actually something that I'd obviously rather not be "living with" quite frankly. In my mind, to say that I'm "living" with it implies a sort of quiet acceptance which doesn't really describe how I view the situation.
But having said that (without making light of any dire situations others are facing), I have consoled myself with the notion that there are probably much worse things to have been diagnosed with. Truth is, at the moment, I'm not actually "suffering" per se. So I guess it's fair for me to fall in with the notion that I really am "living with dementia" - albeit reluctantly.
In the scheme of things, I consider myself to be relatively fortunate because the type of disease that has afflicted me has (so far) proved to be slow-progressing. It's noteworthy that there are umpteen incarnations of this dreaded disease and each person's symptoms will depend on the type and severity of disease. Much also depends on age, treatment, individual responses and even individual attitudes. It all adds up.
If you enjoy a spot of sympathy and a bit of the old "there, there" routine, dementia might prove to be a bit of a letdown. Very few people will initially display much by way of sympathy towards dementia sufferers because they'll often be oblivious to it. Dementia is a bit like backache, in that it goes largely unseen. It'll only be people who spend the most time with a dementia patient who'll notice any changes. Even then, young onset dementia symptoms can be quite subtle and may not initially present on a regular basis.
When people find out that I have Alzheimer's, one of the FAQs I get quizzed about is what actually prompted me to visit a physician and get a diagnosis. This isn't a very easy one to answer because, early on, I hadn't realised that there was anything amiss. I was eventually pushed to go and see my GP by others who'd noticed some changes. In fact, I'd quite arrogantly poo-hooed the notion of seeing a doctor for quite some time. To me, the suggestion that there was anything awry seemed utterly ludicrous. I only really complied in order to keep the peace and to get folks off my back. However, I had noticed that more and more people were making comments about my forgetfulness and my increasing tendency to repeat myself. Quietly, this was beginning to make me feel a little concerned.
Not long after visiting my GP, and well before I actually got to see any specialist Consultants, I realised that I was failing to recognise what ought to be familiar surroundings. This often happened when I was driving my car. It felt like deja-vu in reverse. These episodes were causing me to panic and become disorientated. On a few occasions, I even had to pull into laybys in order to catch my breath, mainly because of the anxiety I was experiencing. I dismissed the first couple of episodes as being down to fatigue but I soon noticed that these episodes were occurring more and more frequently. It was almost as if my brain was momentarily rebooting, like a faulty computer. Once back online, I could go for days without experiencing any further symptoms. I felt fine, well able to brush it all under the carpet.
When it comes to the art of self-diagnostic aplomb, I've always been in the champions' league. Who needs a physician when I can simply rely on my own wherewithal to play down symptoms or even self-prescribe? In my pre-dementia world, physicians were utterly superfluous, I barely ever paid them a visit nor did I give their profession a second thought. I was the NHS's model patient, one that made zero demands on services. However, when it came to symptoms of cognitive dysfunction, I had absolutely no answers and my self-diagnostics started bordering on hypochondriasis. Was I having mini strokes? Did I have a brain tumor? Or was it all just an annoying figment of my imagination, fueled by all the allegations of forgetfulness and self-repetition? All of these things seemed perfectly plausible.
But, sadly not. Several tests and many scans later came the shattering diagnosis of 'early onset Alzheimer's disease.' I had attended several appointments at Liverpool's Walton Centre where both my wife and I had expected to hear the bad news on numerous occasions. But, more and more tests were required before the Consultant committed to delivering his sobering diagnosis. When it eventually came, I didn't feel anything other than total numbness. Strangely, my wife was far more shocked and upset than I was, but I guess that's a pretty standard reaction. My becoming a blubbering wreck wasn't going to solve anything.
Rather than being consumed by self-pity, my immediate post-diagnosis life was immersed by the need to sort things out in the aftermath. I had been an active property developer and still had lots of commitments. Just stopping work as per medical advice was clearly a non-option despite being told that I should immediately stop operating heavy machinery, use ladders or go up scaffolding. All that effectively meant STOP WORKING because all of the above were part of my daily routine. But, I carried on working for three more years post-diagnosis, mainly because I had so many loose ends to tie up. Despite everything, rightly or wrongly, I still felt capable of work.
When it comes to it, to say that I'm a dementia "sufferer" does appear to have a number of negative connotations, despite the fact that dementia is hardly a positive for anyone. Right now, of course, there's no cure for this progressive disease.
For me, one of the most abhorrent things to have arisen from having this condition has been my loss of interest in a hobby that I once loved. I adored messing about with classic cars. I owned several. Not so long ago, I was always one of the first on the showground, polishing and minting up my cars for various summer shows. But, I suddenly lost all interest - almost overnight. I can't explain it but I saw the cars as a chore rather than a pleasure. The enthusiasm I once had just dried up, like a barragem in a drought. So that, alongside factors like my family worrying about my long-term health, represents "suffering from dementia."
But I'm still here in a relatively fine fettle. That must mean I'm surely doing something right because it puts emphasis on the positive, that I am indeed, like it or lump it, "living" with dementia.
Douglas Hughes is a UK-based writer producing general interest articles ranging from travel pieces to classic motoring.
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