Challenge Week 31 … If you were approached by a journalist who wanted to write a story about you; how would you respond and what would you want to interviewed about? We might set a word limit to this one so you don’t get too stressed. Try to write 250 words you can always write more if you want.

I have been interviewed a number of times and once even made the front page (blushing). Usually, it has been to do with a cause that I have been championing, my partners response is to roll his eyes and say “here we go again.” Do I want to be interviewed about something I am really passionate about? Hmm, shall we take a sneak peak at the list?

1/ The Tibet situation – human rights and genocide
2/ The right of a woman to control her body and no means no!
3/ Dementia awareness and advocate
4/ Any form of cruelty to animals – vivisection
5/ Fracking – ecological issues
6/ Sustainable living
7/ Legalising marijuana for medical purposes
8/ Euthanasia and the right to choose
9/ Freedom of speech, the right of access to education, medical treatment and social support
10/Boots for Bali
11/Hope 4 Himalayan Kids
12/Gender parity opportunity and equal pay
13/My family
14/Vegitariaism
15/Genealogy and preserving our history
16/My writing
17/Organic food no GMO’s hormones or pesticides

Now this list is in no particular order and I could go on adding to it, and no I am not a leftist, tree-hugging, greenie, vegan, social worker. I am a person who has strong views, not afraid to speak out and cares for the planet and the beings who inhabit it. I cry at sad movies and when reading a beautifully crafted story. I love Harry Potter and believe that magic does happen, but not always in the way you expect it. So my choice?

The loneliness of dementia. In six days time, it is the anniversary of my father’s death. The following day is my parents wedding anniversary. This year the would have celebrated 70 years of married life. Dad died at the age of 90, not from old age and peacefully, but from complications caused by Lewy Body Dementia or Diffuse Lewy Bodies and in pain. This is the same disease that caused Robin Williams to take his own life. The reason I would choose to be interviewed on this subject is because there is an appalling lack of knowledge and understanding about dementia in both the medical profession and the public at large. You mention dementia and people automatically think Alzheimers. There is so much more to dementia than Alzheimers. There are over 280 varying forms of dementia. Babies may be affected, young children and teenagers can be affected. In these cases, there is usually a genetic cause and it is a part of another illness. Dementia itself is not a disease. It is an umbrella term for a series of identifiable behaviors or symptoms that define a particular disease. Young Onset Dementia is a term applied to someone in their 30s,40s, 50s or early 60s with an illness defined by a set of dementia symptoms.my-dad

When my father became ill the disease was not identified by his medical practitioner who had treated him for over 25 years. We were told it was part of the normal aging process and was to be expected and to stop fussing. This GP would not even provide a referral to a specialist Gerontologist. Not accepting the doctor’s diagnosis of old age. I started to research and realised there was something very wrong with my Dad. We eventually were given a referral and saw the specialist and were presented with a diagnosis of Lewy Body dementia. I had never heard of it and as the years passed I was made painfully aware that neither had most of the medical fraternity or the general public. The disease has a number of unique markers or core symptoms which include fluctuating cognition, REM sleep disorder, rigidity, spasms, hallucinations affecting all the senses, extreme sensitivity to many drugs commonly used with the elderly or psychotic patients.These drugs can cause worsening of the condition and or death. The autonomic nervous system is compromised and in the later stages swallowing and talking cease. The patient is locked in a terrifying world and unable to communicate effectively. Friends and sometimes family fall by the wayside. It is too confronting, and they don’t want to remember the person like that! Nursing staff, caregivers, and medical professionals on all levels require greater education about the treatment and handling of patients with Lewy Body dementias. Dementia is terminal this was identified by WHO in 2006. There is no vaccine, no prevention, no cure, there are no dementia survivors. The symptoms cause the body to shut down and the organs to fail as the brain atrophies as it’s communication pathways shut down. I never miss a chance to talk about dementia and its effect on the individual and their loved ones.

The collage of my father was prepared by his granddaughter as a tribute – Thank you, Amanda, for capturing so well the man we both loved so dearly.

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