Phoenix went great. ALFA - Assisted Living Federation Association conference has come and gone. It was an amazing experience from beginning to end. It began months ago when I was contacted by ALFA asking if I'd be interested in being a speaker. The Arizona ALFA committee and I had multiple Skype meetings about the conference. I learned it was to be in front of 250-300 members.
I'll be forever grateful to Arizona ALFA for giving me this opportunity. Inviting someone with FTD or any type of dementia to talk to a large audience for 2 hours takes tremendous courage and vision. I can't say enough how the staff of ALFA has been on top of this since inception. Crystal and Rita had every detail worked out from talking points, travel arrangement, speaking as well as taking tours to multiple assisted living sites. This was as fine tuned an organization as I've ever run across. It was shocking and refreshing. Being sick with FTD I'm used to dealing with all sorts of agencies and Bozo's out there in society. It's disheartening to be kind in expressing how I really feel.
Since being invited to speak at this conference I've heard nothing but how Arizona is a leader in assisted living care in the United States. Anyone who follows my writing knows how I've visited multiple sites in NYC and how I probably prefer death than to be checked into one of these house of horrors. Now I've visited multiple sites in Arizona and broken bread with many involved in making Az successful and there is no question that Arizona is the real deal with Assisted Living and there making a concerted effort to learn about FTD and take care of us in a well informed, respectful way.
I'm not easily impressed with any organization to say the least, but Arizona ALFA impressed the hell out of me. As with all well run successful businesses it's leadership that makes the difference. Karen Bono is the President\CEO of Arizona ALFA. I only met Karen briefly, but constantly heard from the people around her what an amazing person she is. Karen is a trailblazer for Arizona Assisted Living and visionary who is known and respected nationwide. Karen is on top of her game being named to numerous legislative task forces a guiding force in assisted living. No question that Ms. Bono is one great woman whose path is making a significant difference in many lives. One can only hope a hidden gem like this can move up to be a leader on a national level. I can only give her my wholehearted thanks in making one of my dreams come true and having the guts to let an FTD'er speak at her conference. Hey, Arizona is now firmly on my map when LTC becomes necessary. I can hear my friends on Team Howard moaning now.
The ALFA conference is the exact audience I dream of getting in front of. Long term care is a nightmare for patients, caregivers and these facilities. FTD awareness could go a long way here.
Of course I was well organized in heading to the conference. Had months to prepare my Power Point presentation and get everything together. Months turned to weeks and weeks to days. The day before I flew to the conference I hadn't had shit done. Absolutely nothing. I tried and tried every f-ing day, but it didn't happen. Oops, forgot that I had FTD.
Was in a panic and wrote to Sharon Denny of AFTD quoting the "Astronauts Prayer".
"Please Lord, don't let me fuck this up".
In my heart I knew everything would work out great and sent out a bunch of emails proclaiming I would nail this. I eat, breathe and drink FTD 24hrs a day. This was a defining moment in my life and there was no way I was going to screw it up. I was addressing a group that owned and operated assisted living for the state of Arizona. My mission was to have them leave leave and not only know what FTD is, but to have the knowledge of how to have there residences better serve there client/patients with FTD.
I told them the Howard Glick story and explained to them this isn't about me. Howard Glick and "Howard's Brain" is about every patient, caregiver and person suffering the horrible effects of FTD world. The years of misdiagnosis, losing loved ones, family thrown into turmoil, career ending abruptly, getting financially ruined and my total loss of hope culminating with a 4 day coma after a failed suicide attempt. Then the comeback. Disregarding my new partner FTD and finding a way to work around everything. Starting my blog which has crossed 68,000 readers, making an FTD documentary "Howard's Brain" which has about 200 hours filmed, starting the first and only FTD Patient Support Group with over 65 members, countless work with other FTD caregiver groups and forums and now a public speaking engagement. All this with no caregiver. If I had a caregiver I'm not sure if my survivor mode instinct wouldn't be in overtime like it is now.
We took frequent question and answer breaks. I showed "It is What it is", the "Howard's Brain" Kickstarter trailer and the current GoFundHoward fundraiser my friends have put together to help me in my current situation.
We discussed at length behavioral issues and symptoms. How these problems effect life of everyone at assisted living and possible solutions in dealing with an FTD resident.
I explained my own quagmire of being forced to leave NYC. How staying in NYC is now dependent on a fundraiser by friends and loved ones. The fear I won't make it elsewhere without a support network. How I absolutely hate how my life being FTD dictated and how I just feel like hitting the road.
One man stood up in toward's the end of the conference and asked of everyone to collect donations for me. I thanked the man and am extremely grateful for any and all help, but honestly felt so embarrassed and humiliated. My life as a successful businessman has now come down to fundraisers and people offering financial aid. I've never been unemployed a day in my life and never needed a penny from anyone. I was handed an envelope after the my session with $800. Thank you Arizona ALFA members. This has been added to the fundraiser under your name. Any others that want to help me continue on, your donations are deeply appreciated.
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I've had an absolutely wonderful life and still do. Arizona ALFA helped me attain a dream. A speaking engagement to a group where FTD awareness will make a big difference in many lives. I'm hoping there will me many more ALFA conferences and other speaking engagements in my future. I'm hoping this is just the beginning of my crusade to further awareness of FTD. I'm ready to hit the road!
I'm sitting here laughing out loud at Darling Coffee, miles from my apartment. I've absolutely no idea how I'm going to make it home. I'm totally exhausted from writing. Hope this blog comes out okay. No energy to edit or even reread it. I'll make it home, I always do.
Please share this blog and success story!!
Howard
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I've heard my appearance was an overwhelming success. Here are some of the first comments by attendees. I didn't add the attendees names because permission wasn't granted.
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Good evening Howard! I cannot tell you enough what a blessing you are. You gave the Arizona ALFA conference attendees the best two hours that they have had at our event in a very, very long time. You brought peace to many that never had a chance to see their loved ones properly diagnosed, and you provided information on FTD that cannot be duplicated. We will forever to greatful and you now have assisted living providers across Arizona supporting you!
Crystal
Assistant Director ALFA - Arizona Assisted Living Association.
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WOW!! What a great testament to the power of what you do, Howard. We all thank you for the great conference. It's all the buzz.
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Today I learned for the first time in my life from a funny,
smart and courageous man that my dad probably has a disease called FTD, the
symptoms, behaviors, and the misdiagnosis for 6 ½ years. I thought OMG he is
speaking about my father.
His name is Howard Glick and I highly recommend to each of
my loved ones and friends to visit is website and blog to learn about this rare
disease which is almost always misdiagnosed as depression, Bi Polar disorder,
manic depressive, etc., etc. and in my fathers case never diagnosed. FTD is
Frontotemporal Degeneration/Dementia.
This was a powerful two hours for me and it gave me a true
understanding of WHY my father was different from others. It instantly healed
all my ill feelings and allowed me to find an inner peace.
I love you all and could not wait to share this with each of
you and even though my dad is not here…..I know he now finally knows.
That's so amazing Howard; you are now a hero.
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