On 22 October me and my friends are walking 30kms in a fitness challenge event to raise funds to help find a cure for Alzheimer's - the most common form of Dementia, affecting 70% of people diagnosed with the disease. The latest figures show that over 380,000 people are living with Dementia in Australia today, with over 1.2 million involved in their care. 25,000 of these people are living with Younger Onset Dementia (YOD = diagnosed prior to age 65, some as young as 30) Projections suggest that over 900,000 Australians will be diagnosed with the disease by 2050.

I want to share my story  to offer some insight into what it's like to have your partner diagnosed with YOD.

My husband Paul (aka Freebie) was an intelligent and creative man who had several careers; metallurgist, musician, sculptor, Industrial Arts teacher and furniture maker as well as renovator of our two beautiful homes. He had a creative as well as a practical mind that could transform a vision into a stunning reality.

About 8 years ago, Freebie reduced his hours at school to focus on furniture making.  Unfortunately shortly after he noticed his brain was not working as it should. Calculations for his furniture designs, which were once a straight forward but complex process, were having to be done two and three times before he was confident to cut his timbers.

I have to confess that I didn’t really notice much change at first. Perhaps only that he was a bit more vague than usual, but aren’t all men?!

He knew something was wrong and pursued an answer, seeking out opinions and solutions. The first was from a recommended kinesiologist (which he thought was a waste of time) then a GP who referred him to the wonderful Frontier Neuroscience team at Prince of Wales.

It took some months of testing, but at the end of it, Freebie received the confirmed diagnosis of Younger Onset Alzheimer's. He had just retired from school with a plan to ramp up his furniture making as he had always had a vision that he would be working with timber into his old age. He was 60 years old and I was 50, we thought we had decades ahead to enjoy life but now the vision of our future was shattered.

After the initial shock and grief, we realised that we still had a life to live and capacity to do many things. In the beginning, life was almost normal, and we did what we've always done - talked together, shared our problems and our joys, laughed with (and even at!) each other and enjoyed several amazing holidays.

Later, the disease slowly took more cognitive function away and those every day activities you take for granted dwindled away. Freebie is now at the stage where he relies on me to assist him with the smallest of tasks. He needs help to get dressed, have a shower, eat a meal.

These days he struggles to find the words to express himself, but knowing him so well I am usually able to guess. There are still flashes of the old Freebie I once loved more than life itself, but they are getting less frequent. I am mourning the loss of my soul mate even while he's still here - it's a strange type of grief to come to terms with. I do what I can to give Freebie the best life possible, but I know I get impatient with him and he feels let down. I have no idea how far we are along the continuum―every Alzheimer's journey is so different.

While a cure is likely still some way off, and may not be available in time for us, I hate to think of others suffering the way we are. It's a long tough road.

Visit Alzheimer's Australia website to find out more about Dementia and Alzheimer's: https://fightdementia.org.au/

About the event:

A 30km walk, starting & finishing at Manly Wharf, Saturday 22 October, 2016

The route takes participants along the the scenic Manly-Spit walkway, then across to Manly Vale to walk the loop around Manly Dam, then across to Queenscliff, down the esplanade, around North Head before finishing at Manly Wharf Hotel for a well earned celebration drink!

Go to my Plot-A-Route map for more detail:  https://www.plotaroute.com/route/250506

Participants may choose to do a 15km option: contact Pam for details

Donations:

Thanks for taking the time to visit my JustGiving page.  All donations to Alzheimer's Australia are tax deductible

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.