Hi,

My name is Marie Luque and I would like to share a portion of my story with you.

I shared a previous story with you five years ago. It was of my husband Ron and I at home caring for his nephew Craig who lost both legs and an arm from Sepsis.

Craig loved life and wanted so much to live but left us in May of 2017.

During our home care, my husband Ron was diagnosed in May of 2016 with Primary Progressive Aphasia PPA short. He was struggling with his speech from late 2013 exactly what Bruce Willis is diagnosed with at present.

This disease is vicious, it takes everything from you starting with faulty speech then progressing into many stages. My husband's sickness advanced to Primary Supranuclear Palsy PSP short.

My mission is to find a name for this particular disease. Aphasia itself is known by most which is curable but PPA is not.

It starts with Primary Progressive Aphasia and most of the time ends with Dementia or Alzheimer's.

We battled this journey for almost nine years, the last five the most crucial. We worked hard at accepting every challenge that came to us and felt we got this under control. We would then find something else got taken away such as speech, writing, balance etc.

Regardless of my husband's challenges he loved life just like his nephew Craig and wanted so much to live.

I came from a Christian background and know a lot about the bible but found most of my questions answered through Buddhism.

Our daily saying would be (One day my husband would get up out of bed and start speaking to me and I would drop from being shocked).

That was our private joke of believing the "Impossible into Possible". Christian would be "Miracles do Happen".

My husband Ron lived off hope each day and loved people. Our families were the Nurses, Therapists and Care Givers when it was allowed before Corvid.

The three things Ron asked for were to always stay in his home, swim in his pool and have green juice daily.

I made sure those were fulfilled by installing a chairlift in the home with the stairs and one in the jacuzzi and his daily green juice before Ron left us on March 31, 2022.

When you hear about Ron's illness there were questions. We all needed to know as much about his disease. There was no one word or sentence to describe what Ron had. His medical report stated Dementia and Alzheimer's in 2018. Even though those stages were mentioned didn't mean it would be the process. There was always confusion in discussing this disease.

Ron was cognitive up until the end of his life but lived in SILENCE.

In no way communication was possible as time progressed but we did it through our hearts.

The funds requested in going forward collaborating with others in search of a name and better explanation for this disease.

I've learned so much about our bodies and illness and am willing to share whatever I can help with others who need help. After my journey with my dearest beloved Ron whom I love so much. I'm determined, to find a name.

In the future whenever others lose their loved ones and are asked where can they donate, it won't just be Aphasia or Supranuclear Palsy which are some of what this disease does, but a name is my mission.

Thank you for reading.

Marie