Learn About Your Diagnosis
By researching and learning about my diagnosis, it has helped me to understand the changes that are occurring in my body as this disease progresses. Not only has this allowed me to cope better with the symptoms that I experience, it has motivated me to find ways that will hopefully slow down the progression of this disease in the years to come.
After coming to grips with my diagnosis, I felt a strong desire to ‘transform the unknown into the known’. That is, I embarked on a journey where I wanted to learn everything I could about this disease, including its history, causes (risk factors), symptoms, progression and available treatment options. While the countless books, journals and articles that I read, provided me with a lot of information, it also left me with a large degree of uncertainty. According to Wilson et al (2005), the term uncertainty has been found to be associated with ‘anxiety, worry, and difficulty in adapting to new environments and culture’, I wanted to know why no cure has been found for this disease, just a range of drugs that can provide relief for some of the symptoms. This was despite the huge amount of time and money that has been spent in the last 30 years. I therefore, experienced no ‘joy’ just ‘disillusionment’, as I came to understand the answer to this question. Wilson et al (2005) refers to this as the ‘pleasure paradox’ .
However, things started to change for me at the beginning of 2020, with my enrolment into a clinical trial, coupled with the people I met people from Dementia Alliance International and Dementia Australia. I say this because I came to the realisation that it might be possible to manage my Alzheimer’s Disease in such a way that I could extend the accepted trajectory of the life expectancy of this disease. As a result, I shifted my focus towards researching what new methods, interventions and strategies are being discussed and put forward throughout the world on this topic. What you are reading on my website, represents a culmination of this research.