Thursday, May 30, 2013

Assisted Living


Scottsdale Memory Care








 












This is Scottsdale Arizona Memory Care. I was invited to tour this and other facilities while visiting in Phoenix for the ALFA Assisted Living Federation conference. Arizona is a leading state in senior care with so many retirees there. Before I traveled to Arizona for the conference, I was asked if I wanted to visit some assisted living facilities. My answer was no thank you, I've visited enough in NY.

For a little history, I've already visited many assisted living in NYC and each one was more disgusting than the other. I've written freely that I welcome death before living there. The final one I visited in Riverdale was surrounded by million dollar  brownstones. Inside the stench of urine was overpowering. Lumpy mattresses, bicycle cable locks securing residents belongings from thievery. One of my friends from "Memory Club" said to me during the tour, "this is a place to die, not to live". They did take Medicaid though. Whoopee.

My friends always joke with me that when I check in to one of these places they would have a, "Dress up Howard Day" and take the kids/grandkids to visit me. They'd dress me up in elaborate costumes and makeup while I vegetize. Dorothy from Wizard of Oz, Alfred Hitchcock, etc. One visit to one of these house of horrors and no one would return.

It was arranged for me to visit some sites in Arizona with me being told it was different. Rita, my lovely persistent guide, wouldn't take no for an answer. What I found is shown in the pics above. A beautiful facility run by caring, loving people. Peggy and Dawn met me and showed me around. The people that worked there were experienced long term workers that cared. This was also the first assisted living facility I've been to that has experience with FTD'ers. They've had 3 FTD residents. Not one in NY did. Not only did they have experience, they really were interested in giving the best possible care and were asking me questions. Unbelievable, people actually acting like people should. We also discussed a possible small wing being dedicated to FTD. Just the fact we were discussing it was a miracle to me. Every place I've been to up to know not only didn't know what FTD was, they didn't want to know. Couldn't give a shit. Just interested in selling there services.

The residents at Scottsdale Mem. Care were actually happy. Felt like I was in a wing of the Raddison resort I was staying at. I want to thank Dawn and Peggy for the time they spent with me, showing me what assisted living could and should be like. Hopefully one day I'll be checking into that or similar resort. Oh, Scottsdale Memory Care takes Medicaid, Whoopee :-) BTW - I don't have Medicaid, but many FTD'ers out there do. There should be a rush of FTD'ers now looking to relocate. Anyone in FTD World knows the nightmare assisted living is for us.

For more information, brochure etc. go to Scottsdale Memory Care or call Dawn Romayo at 480-656-4084


BTW - I wouldn't be me if I didn't do due diligence and checked into complaints for them and the owning corporation: "Encore Senior Living".  Couldn't find any complaints. Seems like this just happens to be a well run organization. Imagine that. Encore Senior Living has assisted living facilities in: Arizona, Oregon, Utah, Florida and Illinois.

Well, I'm still in NYC and don't know if I can remain. Arizona has just moved into my confusing FTD life of where I can and possibly want to live. My children Myles 15 and Chelsea 19 are in Seattle which is 2:30 hr flight from Phoenix. It would be nice to be closer to them. Arizona has always been on my short list with me loving the Sedona, Tucson and Phoenix areas. Heat - Big deal, lived in Israel. 
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My friends have set up a site to help me since I've run into unforeseen difficulties. Please visit the site below for a further explanation and to help. Thank you.



Howard

Friday, May 24, 2013

FTD Awareness Issues



Arizona ALFA Conference


video

Standing "O"
(10 sec)

I texted a friend to see how she's doing. B texted back that her cat fell or slipped out her apartment window. She lives on the 5th or 6th floor. Her cat is in critical condition and fighting for it's life.

I texted back, "Nasty cat from what I remember". I only met the cat briefly once.

Didn't realize what I was writing. I was surprised when she wrote me at length how angry she was with  me and how I should wait before writing because I've FTD. How the cat was a lot sweeter than I'll ever be yadayada. I wrote back a couple of times apologizing profusely saying I was sorry but it was my disease, not me.

It's been about 4 or 5 days and still haven't heard a word from B. This is a friend that has always been kind to me and checks up on me every couple of weeks. Not to many of those left in my life. I did see a pic of the feline on the web with an IV tube in it, read it broke all its toes and other stuff as well. Will take months of recovery till healed.

I had absolutely no control or awareness about what I wrote about her cat. No realization at all that what I wrote was wrong till I got her response. As I sit here drinking my first cold beer of a Friday night, I still don't give a rats ass about the cat. Means absolutely nothing to me. This is FTD. I do miss my friend who is gone, maybe forever.

Those of you reading this might be apt to judge me about Casper the cat. Would you rather I lie. I wasn't this way before I got sick and I'd rather be honest as to further awareness of what a dreadful disease this is than sugarcoat. If this is to much for you, go read the funnies.

Another friend bites the dust. An FTD'ers world gets smaller and smaller. We continue to lose family and friends till there's just about no one left.

LOL - Still nursing my first beer and thinking of what I wrote to my support group. Earlier today I posted in the  FTD Patient Support Group how bored and lonely I was. How I hate holidays because I'm always alone except Thanksgiving. Memorial Day with zero plans. Guess I'll get BBQ Chinese Spare Ribs take out. Be a bit festive. The phone has rung once since I returned a week ago from Phoenix. That was a friend kind enough to call me to tell me they were taking my fundraiser ad down from there web page. No big deal. Sort of guessed it was going to happen. Violated there web policy. 


Any guesses to why I am alone?

Not looking for pity, a violin player or to be rescued. It is What it is. 
I have FTD and I am not alone.

* A local FTD'er just contacted me about getting together this weekend. How's that for a happy ending.

My friends have set up a site to help me since I've run into unforeseen difficulties. Please visit the site below for a further explanation and to help. Thank you.



Happy Memorial day 

Monday, May 20, 2013

Arizona ALFA Conference








 










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.



(CLICK)


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.




Hi Howard,
This morning I heard you speak at the ALFA conference in Arizona and I just wanted to tell you how so fuckin' inspiring you are!!! Excuse the language. You were the absolute best motherfuckin' speaker in the house! It's hard for me to even imagine what you're going through but I want you to know that your speech today will stay with me forever. I will donate what I can to you & your cause b/c it's an amazing thing that you're doing. Congratulations on doing what you love & being damn good at it!

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Howard, I was at the ALFA conference and really enjoyed your session. I am an assisted living nurse and learned so much from you and your experiences. Thank you so much. Looking forward to following your blog.
Howard, you did an AMAZING job and you opened so many eyes as well as healed wounds for many that never knew their loved one(s) had FTD. You are opening doors and spearheading a movement that will change the future of FTD research and the lives of those living with it. THANK YOU!!

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Howard, you did an AMAZING job and you opened so many eyes as well as healed wounds for many that never knew their loved one(s) had FTD. You are opening doors and spearheading a movement that will change the future of FTD research and the lives of those living with it. THANK YOU!!


Monday, May 6, 2013

FTD and GoFundMe

Hi Everyone,

Unfortunately things have been taking a turn for the worse in life. My struggles with FTD are getting tougher, with my friends noticing my slow progression more than me. The outside help I was getting that was helping me stay in my apartment and NYC has stopped due to unfortunate luck. My longterm battle to get my long term disability reinstated by Unum is over. The lateness of the appeal due to being misdiagnosed has enabled Unum to get out of there obligation. It's now at the point I can no longer sustain myself and my extremely modest way of life. I've cut back every which way and can't cut back any further. 

Now I'm faced with having to leave the area grew up in where I have neighborhood support as well as rare good medical care for FTD from Columbia University Medical Center. Anyone whose been following my blog knows that I'll move and do whatever I have to do to survive, regardless if I'm being told I shouldn't.

My friends, doctors and social workers are totally against me moving. I'm being told over and over it will be a catastrophe from those that know me and FTD well. Uprooting from an area of support to an area with absolutely no support and starting over with FTD I guess is not ideal.

Many friends who follow my work from around the world have been suggesting a fundraiser for a while now. My lifelong friend Marc Turkel (POA), Alice Walton, (Forbes writer, PhD neuroscience, biopsychology) and Joe Becker (filmmaker "West Wing", "It is What it is") have combined there talent to put together a Fundraiser on the fundraising site, "GoFundMe". 

There's a short piece written about me, what I'm trying to accomplish and a 3 minute film by Joe Becker.





Since being diagnosed with FTD about 3 years ago after years of misdiagnosis I've dedicated my life to furthering awareness of FTD and have become a strong FTD advocate.

This blog which I started has had over 66,000 visitors.
The documentary film I am making with Joe Becker for AFTD, "Howard's Brain" has about 200 hours filmed.
The world's only support group for FTD sufferers which I created and facilitate, The FTD Patient Support Group has 64 members and is extremely active.
These are a few of the many FTD projects I've immersed myself in.

Though I've slowed down a bit as FTD has progressed, I continue on these and other projects and will for as long as I can. 

I hate asking for help, but I need it. If you could please go to the Crowdfund GoFundMe link above and make a generous donation to keep my from being forced out of my apartment, it would be deeply appreciated. For those that can, there is also an option to help me each month. All I'm looking for is a bit of stability in living. To stay in my apartment and continue the work I'm doing that I'm being told is helping people world wide.

Thank you so much for whatever you can do. No matter what, I will keep going for that is what I do.

*If we raise enough fund, the excess will go to a special fund to help FTD Patients that are also alone.

Please share this with as many people as possible.

Howard Glick



Wednesday, May 1, 2013

The FTD Adventure Continues

Well, after a year of off my Cheerios routine breakfast, looks like I'm getting back on track. Last year I tried the Atkins diet and switched from cheerios to eggs and bacon. I got severely scolded by my Cardiologist  and a doc friend. The Atkins autopsy was done at Columbia and Atkins was a mess, according to my cardiologist that was privy to the results. Ordered me off of it.

Well I haven't been able to get back into my breakfast routine for 10 months. I have cheerios here at home. Bought milk plenty of times and threw out the containers unopened and spoiled. It's so hard to keep up with routines once there broken. FTD sucks, what can I tell you. Being alone and trying to stay on track with routines is incredibly difficult. Anyway, a few days a friend demanded I pick up milk while on the way home. I did and now it's 3 days straight eating Cheerios for Breakfast. "One small step for man, one giant leap for an FTD'er." Back on track. I don't need much of a push from friends or a companion, but I admit I do need a bit of help and a little bit of help goes a long way.

For me this is a significant accomplishment and I'm very proud that I got myself on track. Then I think about it and it's scary and ridiculous what my life has come down to. I pick my battles and keep on fighting.

Hygiene routine is the first and foremost in my FTD battlefield with that pesky parasite, depression a close second.

No matter what, I'm showered and shaved early each morning without missing a beat. From there it gets more difficult. Used to brush and floss my teeth twice a day. Somehow that dropped down to just once a day in the morning over a year ago. Better once a day, than not at all. Told my dentist a few months ago that I brush each morning and she told me to switch to the evening. Easy right? Not with FTD. Now I was skipping days missing nights and not brushing at all. Not good, teeth are the one thing in life that if you ignore them, they will go away.

Would like to say there's a happy ending, but I missed brushing my teeth last night. I did brush them this morning though. I'm making sure it's done at least once a day. Sometimes in the afternoons. Crazy life. Clothes, wash, cleaning etc. etc. The list goes on and on. 

My morning coffee routine is now a certifiable disaster. To me this is extremely important because this is the most productive part of the day. I put all my energy and focus on writing my blog and watching nice butts go by. On alternate days I keep up with my support group as well as all the others in FTD World. I used to go to Starbucks in my neighborhood, but that became to noisy and crowded after the renovations. I tried heading downtown for a while but the noise of the subways and overstimulation of mid-Manhattan became to much. That and the expense of being downtown ended this FTD'ers foray.

No question that I'm getting bombarded by noise and overstimulation here in NYC. I do wear noise reduction headphones, but that only goes so far. Doing the best I can to fit in here in NYC with FTD, but it's almost like trying to put a round peg in a hexagon hole. NYC is not an FTD friendly place.

I will be leaving the neighborhood tomorrow and will be trying to find a internet cafe to go each day to do my work. I've a few that I'll be trying out. I will continue to try to make it in NYC. I started showing FTD symptoms about 10 years ago. When diagnosed 2+ years ago I thought I'd be either dead now or close to it. Life expectancy then was 2-10, average 6 years. Now it's 2-20+ years. I'm going to make for myself the best quality life I can. Hopefully here in NY, if not, well America's a big country. I will make the best choices and decisions I can.   I'm alone in a complicated situation.

Howard

*If my writing seems off, it's because I'm writing from a very uncomfortable environment.  Things will get settled one way or another in the near future. I intend to live life and not wait for death.