Note: as many members of DAI prefer to call it this month Dementia Awareness Month, so that anyone who does not have the Alzheimer’s type of dementia does not feel excluded.
Hello, my name is Bobby Redman.
In 2015 at the age of 66, I was given a provisional diagnosis of mild cognitive impairment / fronto-temporal dementia after experiencing a range of symptoms, including a noticeable change in my ability to perform day to day tasks, some communication issues (both in speech and in my ability to follow conversations); and changes in my personality, picked up by close friends.
Since then, in spite of my scans identifying some shrinkage of the brain, with gaps appearing in my frontal lobe, the neurologist has been reluctant to confirm the diagnosis, given that “I am functioning too well” (His words not mine). I believe that some doctors are reluctant to give the diagnosis of dementia, thinking that they are being kind. With no cure being available, at this stage, they seem to think that an early diagnosis is pointless.
This is frustrating for those of us living with dementia that don’t see a diagnosis as an end, but as an opportunity to develop a support plan to include available interventions to assist us to maintain our levels of functioning.
Recent psychometric testing has confirmed what I have been telling the specialists for a while, in that my cognitive skills are significantly declining along with indications that my motor cortex is impacted, resulting in a decline in my motor skills. This confirms that I have a neurodegenerative disorder, and further tests are underway to see if they can give it a name – this would be far more important if there was any treatment / cure for the condition.
Before retirement, a year prior to my diagnosis, I practised as a psychologist, working with people with a disability. Much of my work was working with people and their carers to develop programs to assist people to function to their highest capacity, on a day to day basis.
This professional skill is why, I believe, that I continue to function “too well” in my doctor’s viewpoint. Trust me, it is not easy to be observing my own decline and capacity and to continually be looking for ways to re-habilitate myself, it would be wonderful to have a professional doing this for me, but the mental focus required for this is part of my personal program, so I don’t complain.
As I start to slip and am obviously less competent than I had been, some of my regular friends are starting to realise that things are not going as well as they appear. I am lucky, many of them are stepping forward and offering support – coming from a strong volunteering background, many of my friends, whom I have volunteered alongside are good, kind people wanting to help.
They don’t always fully understand, and I have to get better at letting people know what sort of things would help me….I am trying!
My newer friends are those who I have met through our work in dementia advocacy. This group of friends are like a global family; a family who you know is there to back you up when you are having a bad day. Without organisations like Dementia Alliance International (DAI) and Dementia Australia , I am unlikely to have ever got to know these people and who’s to say that I would be feeling as positive about my daily living if this had been the case. I thank my lucky stars, each day, that I have this group of amazing people on whom I can count – they give living well with dementia, real meaning.
Bobby Redman © 2019