I have known Erkin almost all of my life. In 1974 he moved around the corner from me and went to my Primary School.
My cousin and I were both madly in love with him and spent our teenage years flirting with him and writing him love letters. I use to tell my mum I was going to marry him.
Erkin and I started dating in January 1984 and on 1st November 1986 we were married.
Erkin is a Mechanic, Carpenter, a great cook, mathematician, and Jack of all trades there is no problem that he couldn’t solve and nothing he couldn’t build or fix.
In 2009 Erkin said to me one day he was having trouble remembering his co-workers names. We then started noticing that he was unable to do simple jobs around the house. He had difficulty making mashed potato or a sandwich, changing a car tyre.
I also started noticing that he loved sweets and cakes, these were things he was never keen on eating as he liked a typical Mediterranean diet.
The initial diagnosis from our GP was depression and he was given antidepressants and sent to see a psychologist who also diagnosed depression and gave Erkin more antidepressants and recommended he take vitamins. Initially there was some improvement. He also went through a barrage of tests, scan visits to hospitals for answers.
I found out he was having difficulty at work (he worked as a truck driver). He began making mistakes and was also sleeping at work in the truck for hours each day and then would come home and sleep for a few hours before dinner and be in bed by 830pm.
During the next 18 months my battle began to get answers as I knew something else was wrong. We then started seeing a new Neurologist and on 21st December 2011 she said that Erkin had bvFTD. Erkin was gutted as he had thought the diagnosis was wrong.
Christmas 2011 was a sad time for us as I had to explain to Erkin that his illness was progressive and terminal. Lots of tears but a wonderful Christmas with our family followed.
Being told at 47 that your husband has a terminal illness was incredibly difficult as we had plans to travel the world and grow old together. We were advised to get our wills and affairs into order and that we would need a Power of Attorney and Enduring Guardianship.
In January 2012 we went on our first holiday alone in 25 years. We cruised the South Pacific and during this time I realised how strong our love is and we would conquer any obstacles that this dreaded illness throws at us.
Erkin retired from work in December 2012 and with new medication and a remarkable group of friends who support us, he has a wonderful happy life. He plays golf twice a week with his mates and has an active social life.
Erkin doesn’t fit the criteria for this illness he has no family history, is a health eater, trim, exercised, ran his own business, independent and a very physically and mentally capable man.
Erkin still looks “normal” and so people have less tolerance for any behaviours and social etiquette outside of “the Norm”, which is difficult with bvFTD.
Accepting the diagnosis was heart breaking, but living with the constant changes has been even more difficult for me and our children. Watching the love of your life and your rock, very slowly changing before is devastating.
We have 3 amazing children and an adorable Grandson who is an absolute joy and the love of our lives. We have also been blessed and feel privileged to have some wonderful friends, new & old & many family members who are sharing this journey with us.
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