I've my hand raised for a question to this worldly classroom. Where are the black FTD'ers? I became an FTD awareness advocate close to 2 years ago and I've yet to run across a black person.
Most diagnosed FTD'ers are caucasian. My support group though mostly white, does have asian and latin representation as well. It's a mix from the U.S., Canada, Ireland, Mexico, Norway, Israel, Puerto Rico etc.
Have been to two AFTD conferences in Atlanta and Houston, none there. The U.S. has a substantial African American population and I've yet to see or hear of one FTD'er. Actually one, ex-Football player John Mackey which we will visit later.
Have over 600 FTD Facebook worldwide friends and thousands of contacts from there. Not one black person.
Have been contacted by government agencies and the equivalent of our Alzheimers Assoc. from Israel, Denmark, Argentina, etc. No black or African countries.
Way over 10,000 FTD related emails. Not one.
Could it be that FTD/Dementia just isn't a black persons disease?
The NY Times recently published an Alzheimer's article disclosing recent findings that African Americans have a higher risk of Alzheimer's than European Americans. FTD is closely related to Alzheimer's.
NY Times 2013/04/10/ African Americans have higher risk of Alzheimers
Alzheimer's Assoc. finds that Alzheimer's rate 14%-100% higher in African Americans than caucasians.
Alz. Assoc. African Americans Silent Epidemic
Okay, there has to be FTD in the African American community. Where are the Black FTD'ers?
Could it be socio-economics? Could it be based on income that better health insurance gets you the better docs which in turn gets you the more expensive testing necessary to diagnose FTD. There are only a handful of University Medical Centers that handle FTD. Very few docs qualified to make a proper diagnosis. I promise you that most docs out there will misdiagnose your black family member and his life and your families will get wrecked. There are of course many that have excellent insurance and means to get good medical help.
What I will about the US healthcare system and how we treat our own people is an absolute disgrace. History will look back at our healthcare system as a huge blemish in what could've have been a truly great country. One that fought over the basic needs of there own people.
Doing my due diligence I ran across an extraordinary African American man that developed FTD. Only one I could find. His name was John Mackey. John Mackey was a larger than life football player. Not only did he have a hall of fame career with and winning a Super Bowl title with the Baltimore Colts. Mr. Mackey was the first President of the NFL Players Union. John Mackey probably developed FTD from repeated head trauma due to football. I know two other players that have developed FTD from football. At least everyone's as sure or that as can be. John Mackey's wife Sylvia is a remarkable woman who is a dementia advocate and holds a chair on the AFTD medical board. I'm lucky enough to know a family friend of the Mackey family who went to Syracuse with John's daughter. Howie told me of what a remarkable family the Mackey's are and what an incredible person John Mackey was. I'm attaching an article and Utube footage of John and his wife while he was in Assisted living. This is a true American Hero family.
John Mackey Utube in Assisted Living Happy
NY Times - John Mackey remembered
Two years ago Sharon Denny, the Director of AFTD came to my NYC apartment with Joe Becker the Filmmaker came to my apartment because I was discovered to have awareness and insight with FTD. I told them I wasn't an anomaly. I've proven that through my support group and other work including this blog.
Well, African Americans and blacks across the world, your not an anomaly either. Time to wake up. You have an invisible disease scourging the heart of your community. FTD travels incognito as a mental illness. Depression, bipolar, schizophrenia to name a few. Up to 80% of all FTD cases are misdiagnosed with many like me being tortured and place in a medically induced fog for over 6 years. Those misdiagnosed are placed on meds that often exacerbate the FTD symptoms and spin the unknowing out of control. Can you see my hand raised again.
The hardest part of writing this article was making sure I didn't offend anyone because I was discussing race and using words such as black, african american, white etc. So everyone knows, more than 30% of the 100,000 that have visited my blog are international.
My neurologist who doesn't follow this blog is one of the best neurologists in the country. I first met her at a dinner when she was receiving a neurologist of the year award. I had a choice between Dr. Karen Bell of Columbia University Medical Center and Dr. Edward Huey, well renowned FTD specialist also of Columbia. Dr. Bell is an exceptional African American Neurologist who already does incredible outreach to the African american community. Dr. Bell and I also grew up in the same area and both used to shop at the long closed Kappy's Record shop. I've also known 5-10 of her patients including her first one Tony. Only one hated Dr. Bell. She had Dementia, what does she know :-)
*Dr. Karen Bell - profile
I'm hoping someone will carry the torch of this article to Dr. Bell or others in the African American community. FTD awareness is desperately needed. Who will carry this torch. If not you, then who. Share this awareness article with your community whatever country, city or state you live in. People should not be suffering needlessly. Shame on us who do not do.
For more information on FTD. You can look at the links on the right side of this page. There's the 2 Forbes articles, the 6 minute Howard's Brain trailer and the AFTD Association for Frontotemporal Degeneration site and plenty of other info in the other links.
On a lighter note, I've continued to lighten up my Walrus size body. I've dropped from my NYC high of 246 pounds down to 218 pounds. Got my inspiration from my group member Kevin Smiley who lost 25 in a month. I've no idea how many pound I lost from the above numbers. Welcome to the FTD land of diminishing skills.
The Howard Glick secret to losing weight. Don't put the scale in the bathroom. That's an act of idiocy, put it in the kitchen. Now that's a deterrent to unwanted eating.
So is a pretty empty fridge :-)
*Please excuse errors in writing. I've written this without rereading it. Am exhausted beyond belief. Have no idea what's keeping me going at this pace. God how I love living!
7791 East Osborn Rd. apt 170E
Scottsdale, AZ 85251