Talk About FTD... Please!

Last evening, while wasting time on my computer, I reconnected with an old friend. (Isn't that the best part of Facebook?) Let me rephrase that... I reconnected with a friend I haven't talked to in quite a while. He and I both may be retired, but I refuse to believe we are old. Except for the fact that he mentioned he saw patients for over 38 years before he did retire.  Then I realized that it has been about 45 years since we last sat down and talked. 

He mentioned the 38 years as part of a statement that he had been seeing patients that long and, yet, had never heard of FTD. He has never been one to stop learning, so this is sad proof that the word about FTD is just not getting out there.

I always come home from the AFTD's annual Education Conference with my spirits lifted. I hear about the advancements in research and am confident that everyone there is doing their part in spreading the word and trying to find a cure. 

While that is true, they cannot do it all. The 60 Minutes story that was broadcast two weeks ago goes a long way as well, but with only 14 minutes of content, it didn't go far enough. The hopeful part is that, now that people have heard that FTD exists, it will be talked about even more. Some day, I hope, it will be recognized as its own disease and (meaning no disrespect to step children and step parents since I am a stepchild) no longer be the red-headed step child. Sorry, but I do love my cliches.

I am so very tired of hearing FTD not being referred to by that name but instead being labels as "Other Dementias."  Alzheimers Disease and "Other Dementias" or even worse, Alzheimers Disease and Related Disorders. Even more irritating is, since those are long titles, it keeps getting shortened to just Alzheimer's Disease. 

Last year, while serving on Pennsylvania's Governor's Task Force on Alzheimer's Disease and Related Disorders, the name kept being abbreviated as ADRD. To make it worse, they kept saying "Alzheimer's" alone when speaking. I know they got tired of me reminding them that there is more to it than just the "AD".  At least include "related diseases" or something similar to recognize we were working on a plan to address ALL dementias. I knew they were tired of me saying it because I saw many eye rolls. I thought if I said it enough, some of them might actually "get it" and acknowledge the ever elusive "related disorders."  If not that, then at least start saying it just to shut me up.

The responsibility for educating the general public is not only the job of the AFTD or government agencies. I believe it is the job of every one of us who knows FTD. My friend watched all three reports related to the 60 Minutes story, the 60 Minutes Overtime as well as the follow up story aired on CBS This Morning. He also watched my presentation during the Lifelines closing portion of this year's conference. I know my friend well enough to know that he will talk about it to others. Then, hopefully, they will then talk about it to others who will talk to others who....

My daughter and my sister (and probably a lot more who have heard it from me) talk about it every chance they get. You already know that I do that as well... probably to such an extreme that people get tired of hearing about it.  I talk about it at my chiropractor's office, my doctors' waiting rooms, really anywhere that I have a captive audience. I also never go to see a new doctor without an NIH brochure on FTD in my hands to leave with them. On a recent return visit to a new (to me) physician, a member of his staff told me that she had seen him reading it at his desk and she was pretty sure he kept it. 

I had finally broken down and gone to a podiatrist prior to attending the AFTD Conference so that I would be able to walk without grimacing in pain. (It worked by the way!) He looked at my chart and asked me about my FTD. I thought I was going to get the standard question of "What is FTD? I've never heard of it." Instead, he told me he had a friend who also had FTD. We spent the entire appointment talking about it. Yes, he did take time to diagnose what was wrong with my feet and gave me some good old school treatments. I did walk pain free at the conference. Just what I love in a doctor... well informed, intelligent and tries conservative treatments first!

One good news/bad news aspect of FTD, at least for me, is the lack of inhibitions. I will, and do, talk to anyone. I can do public speaking without any nervousness. Though I do still obsess about it. It's kind of a bad combination when you get FTD while you have had OCD your entire life. I actually printed three copies of my presentation and packed one in each bag while traveling. That way if a bag got lost or stolen, I would still have one. It's a wonder I didn't sew one into my pocket. Hmmm.... good idea for next time?

In the meantime, the AFTD was live streaming most of the conference. It is now available online. Simply go to theaftd.org and it is under "News and Events".  Or, here is the link:  https://www.theaftd.org/2019-aftd-education-conference-materials/   I think it is wonderful that they have done this. Now all those who were unable to attend the conference can get all the same information the conference attendees received.  

I will end this by asking, no, begging you to spread the word. Look those people who believe that, since they never heard of FTD, there is nothing wrong with you right in the eye and say "Let me tell you about it!"  I often go as far as saying "You never heard of it? I hope you never get it because it kills you." Sometimes I get angry enough to get even more "in your face" about it but I won't suggest for you to say what I do at that point.

I don't really care what you say, just please talk about FTD!