Thursday, July 30, 2015

Richard Taylor One of The Great Pioneers of Dementia Has Passed

"One of the great Pioneers of Dementia has passed". That is what you will see and hear. 
My friend, Richard Taylor passed from complications of cancer on Saturday, July 25. 
I first met Richard back in 2010. He was such a soft spoken man. He, like me had a lot to say on the topic of dementia.
We used to banter back and forth. That is what patients do, patients who are passionate about this disease.
He had his theories, and I had mine, which we both agreed was a good thing. There isn't one set of rules for this disease on how the patient will react to things, or how or what the caregiver should do.
The one thing we did agree on was that we, Richard and I were not the voice of Alzheimers. 
He would hear this everywhere he went, just as I do to this very day. What Richard was, and what I am is a voice of Alzheimers, certainly not the voice of the disease. 
Many times I am asked how I can be so "intellectual" and have dementia. My response has always been that if you were some what intellectual before, you will still have that, up to a certain time.
Richard Taylor was the most intellectual person I have ever known with dementia. As he would always say, "I have dementia, probably of the Alzheimer type".
I had never heard that before, and now people say it all the time. Richard did have dementia, that is certain. Was it of the Alzheimer type? Probably. But Richard was much more than a dementia patient to me.
He was someone who was fighting the good fight. Telling people, anyone who would listen about the plight of the patient.
We talked many times about how being a patient and an advocate for dementia takes so much out you, and at the end of the day, we are no better off today than we were five, ten, twenty years ago.
He understood that all the walks by the Alzheimer Association was not going to cure a thing. He also agreed with me that is the only way this disease was going to be dealt with was from billions of dollars being spent on it by our Gov't for research. 
That wasn't and isn't being done yet to this very day. We talked many times about the stress being an advocate and a patient puts on patients of dementia.
People, for whatever reason, looked at us as if we knew everything there was or is to know about dementia. You want an answer, ask either of them, they know.
We knew we didn't have the answers. No one does. What we have is suggestions. What we do is tell others of our struggles in hopes that it would help another patient or caregiver in some small way.
I remember Richard and I disagree on having both patients and caregivers together on Memory People. He told me more than once that it wouldn't work, I in turn told him that is the only way it will work.
We agreed to disagree. The funny thing was, we talked about this many times, with both of us having dementia, we had forgotten that we had went back and forth on this subject many times.
Richard Taylor was much more than a dementia patient. He was a scholar of sorts. Those who knew him, knew how he spoke. With his soft voice, never getting excited, never raising his voice.
He was a lot like me, he used to tell me. We both said some pretty provocative things along the way. But that is what brings attention to this disease.
He used to call me the bad boy of dementia. How I would buck the system. I would tell anyone they had no clue what they were talking about, if they indeed didn't.
Again, the funny part about this is that Richard in his own way did the same thing. He was just more laid back in his approach.
I suppose the world of dementia has lost a Pioneer. But to me, he was just another man with dementia. The difference being he was trying to make a difference in how people looked at dementia and dementia patients.
He certainly did that. I will miss his soft voice of reason. I will also miss our bantering back and forth on things.
"Speak up". Was one of his sayings. And that is what he would want us to do. Speak up.
We talked many times knowing that there would never be a cure in our lifetime. But we also knew that millions would come after us with this burden of dementia and we had to keep the subject on the front lines.
Many times when a celebrity dies of dementia you will hear how what they did changed the way we look at dementia. That is never true. Most celebrities use their stature for things other than awareness of this horrible disease.
When Glenn Campbell dies he will be talked about for his music, he will also be talked about him having dementia. The latter will fade in days. His music never will.
Richard Taylor will always be known for what he has done in the world of Dementia. He helped hundreds of thousands. He will be missed.
My thoughts and prayers go out to his family. Richard, you fought the good fight and now you can rest, finally...