Appearing as if you are LUCKY virtually always comes through effort and so I usually spell lucky like this: HARD WORK! I heard recently that I have been called lucky because the symptoms of my dementia do not seem to be progressing as quickly as the initial prognosis predicted, or as some others who’ve been diagnosed. This also causes people to charge me with not having dementia. I guess I do feel I am lucky about the slow progression, although I am noticing more changes and I am having to paddle much harder and faster. My dear husband probably notices more, but is too kind to point them out. Last week at a meeting one of my ‘colleagues’ from Adelaide mentioned he could see I was having to paddle much harder than the day before. His wife died from YOD, so I guess he, like my husband is very attuned to noticing even the smallest of changes.

However I believe the reason I am lucky, is that I am working my arse off to fight against the symptoms of dementia. In fact, no less than a participant on The Biggest Loser, or a student currently sitting final year exams for Year 12 or a degree at university, just differently. When I had my three hospitality businesses running concurrently, many people said, either directly to me or behind my back that I was LUCKY it was doing so well. They did not or were not willing to acknowledge the 80-100 hours per week I regularly worked, and sometimes during the year such as the Wedding and Christmas seasons, many more than that. Last week someone also stated, ‘your diagnosis would be tossed out by my  specialist’, which was incredibly hurtful as the comment came from a person with dementia, who I had thought would know how damaging a comment like this can be. I guess it is now I have to remember the following;

The symptoms of dementia are similar whatever the person’s age, and dementia affects the brain in many ways and may cause:

• Memory loss
• Mood changes and inappropriate interactions
• Disorientation in time, day and place
• Difficulties in communication
• Inability  to concentrate
• Personality changes
• Difficulties in recognition, understanding and comprehension
• Behavioural changes

In this list of symptoms of which PWD have some or all, relisting the symptoms of dementia have helped me be more forgiving and understanding. There are many possibilities for explaining this hurtful accusation, but does it really matter. Who knows really, probably not even this person. However, if I don’t speak up about it, then it will keep happening to me and to others, and the stigma and discrimination will continue. Joan of Arc had a hard time too, so with her as one of my life long role models, and with the support of my husband and a few significant others, I will keep speaking up and out.

I have met other people with dementia who seem ‘lucky’ and are doing well, and who are also regularly accused of not having dementia, wonderful people like Richard Taylor who carries a letter from his specialist as confirmation! I’m not sure why PWD are disbelieved so much, but I do know it is hurtful. It is easier to accept when it comes from someone without dementia, but more difficult when it comes from people who know how hurtful it can be. I hope to stay LUCKY for as long as possible, but sadly I am fully aware it will eventually be a downward slide. Perhaps I too now need to carry proof in my handbag for those who accuse me of the possibility of not having dementia.