Part 1: Touch and Temperature

Around my time of diagnosis I became aware of some changes in my sense of touch and thermoception – my ability to sense heat. The first thing I noticed was when I dropped a prawn on a hot barbeque plate. I immediately reached out and attempted to pick it up. Being nice and juicy – covered with olive oil and crushed garlic it proved elusive. I chased it around the barbeque plate eventually cornering it and picked it up. As I lined it up to give it the taste test I realised that the barbeque plate should have been hot and indeed the pawn should be hot. It was about this time – approximately 30 seconds after I first touched the barbeque that I began to “feel” a sensation of heat. At the time I thought this a little odd but dismissed it as it appeared trivial.   Around the same time I began to notice that I was often dropping things like knives and forks and I soon realised it was because when I picked them up I wasn’t applying enough pressure to “hold” them. It was also interesting that I never had a problem picking up or holding a “sharp” knife as I always took extra care with sharp things (as I was told by my mother since I was a little tacker).

I realised by sense of touch was not as sensitive as it used to be.  I approached by GP on my next scheduled visit and she did a quick sensory test and decided that there was a potential issue there and referred me off for some nerve induction tests. If you ever wondered what they did with all the left over torture equipment from the “Spanish Inquisition” – well it was recycled for nerve induction tests. The end result after spending what seemed like an hour being electrocuted like a frog being used to demonstrate this new electricity thing, the learned “inquisitor” came to the conclusion “that there was nothing wrong with my nerves per se”, and implied that it was my imagination.

This regime of testing a function at a cost of time, pain and money, in isolation from the holistic body, and coming to a conclusion that there is nothing wrong seems to be a pattern for treatment for people with dementia. It is probably necessary to rule out likely physical causes – in this case like peripheral nerve damage, but it usually ends with the “bugger off – nothing wrong” approach. This erodes one’s self image and leads to doubt and a reluctance to address what are real personal issues.

Several other medical professions also dismissed my symptoms as they could not identify any “physical” problem. After a good year to 18 months I mentioned my experience to my Geriatrician, who had an “answer”. He didn’t dismiss my symptoms, but suggested the cause was not my sense of touch, but in how this sensory input was being “miss-processed” or interpreted by parts of my brain. A simple and eloquent answer. The emphasis gone from identifying and quantifying a “physical” issue, to acceptance and managing the problem.

This loss of “touch sensitivity” has manifested itself in more ways. When taking some medication such as two large tablets (one is not a problem) with a glass of water I find it difficult to get the tablets lined up in my mouth in order to swallow. I have difficulty in processing the feedback from my mouth about where the tablets are in relation to my tongue. Thin or light cutlery is a challenge to hold. We have overcome this by replacing all our “old” cutlery with new “eating irons” that are thicker in the handle and generally heavier. This has made preparing food and eating much easier.

When I am pursuing my hobby of model railway building I have lot of difficulty working with fine wire (less than 1/2 mm in diameter, and will often cut myself when working with a scalpel to cut balsa wood and plastic. Often the first sign I have of cutting myself is when something begins to slip from my fingers and a look at it, to discover the reason it slipped was because it is covered in blood – mine. I have a copious supply of Band-Aids on hand when I am working with balsa or model structures.

Now, awareness of the likely cause of this issue and acceptance of its reality is leading me to strategies to manage it and an awareness and acceptance of other ”sensory” issues. Discussions with other people living with younger onset dementia suggest I am not unique in these issues. What we have in common is the reaction we get often from main stream medical professionals and from the world at large whose perceptions are often contrary to our own.