Symptoms begin, on average, when an individual is in their early 60’s, but may start as early as in their 40’s. PSP is slightly more common in men than women, but it has no known geographical, occupational or racial preference.
Dad has been battling this disease for well over 5 years now which was diagnosed a few years after his retirement working 40 years as an electrician. What first starts as random and unexpected falls the symptoms of the patient gradually decline over future years leaving the patient bedridden and unable to swallow, communicate or open thier eyes. The patient eventually succumbs to the disease by aspirating food (choking) or pneumonia (fluid in lungs) due to the inability to swallow.
Everyone that knows Dad knows him to be kind-spirited individual that would do anything for friends and family. It hurts all of us that such a horrible disease has chosen such a honest, hard-working, caring and selfless individual. Dad is much loved by his friends and family (wife, 3 sons, daughter in laws and 6 grandchildren). Unlike a lot of grandparents, he never got the opportunity to play and run around with all of his grandchildren due to the disease of PSP trapping him inside his own body. The hardest part is that PSP doesn't affect memory, Dad is aware of his surroundings and family and friends that come to visit him. His mind still sharp as a tack!
Dad is in the final stages of this disease with doctors giving him 6-12 months to live. As a family, we have accepted this however, it is obviously the hardest thing that Dad and us have ever had to face in life.
The purpose of establishing this page is raise funds for CurePSP (www.psp.org), a dedicated organisation based in the USA that are striving towards a cure for this terrible disease - I encourage you to visit this site to get a better understanding of what Dad is going through. In addition to this, I feel it is my duty on behalf of Dad and other brain disease sufferers including MND, CBD, CTE, FTD and Parkinsons that I help raise awareness. There is limited knowledge of this disease particularly in Australia (most doctors have not heard of it nor has the wider community). It has a similar strike rate as MND which Neil Daniher has done a brilliant job in raising awareness for and they are all linked in some way. All it takes is a breakthrough to be found in any of brain disease and it will unlock a cure for others. It is such a horrible end to someone's life - no one deserves to be a victim.
To confirm, ALL funds generated from this account will go to the University of New Sales Wales who are in the process of researching treatments for PSP via Professor Lars Ittner, the project is named "Defining a Novel Drug Target for PSP and CBD". One of only a handful of grants supported by CurePSP in Australia.
To help raise awareness, enter the social media Pies For PSP challenge by taking a whipped cream pie in the face. All you have to do this is
1. Prepare a whipped cream Pie
2. Take a video of your pie in the face from a friend or family member (or yourself) and hashtag #PiesForPSP
3. Share the video on Facebook or Instagram and challenge three of your friends to get 'Pied'
4. Donate any amount you wish to gonfundme.com/curepsp
On behalf of my family ,and other families that have lost a loved one to brain disease, we thank you for your support, please visit www.psp.org.
- Edward Agius
- Rosemary Gatti
- Rob & Ang + Family Calicchia
- Elvira Ubaldi
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