Friday, June 1, 2012

Help has Arrived & Forbes FTD Professor Interview

(New Forbes FTD series patient profile at the end of article) 
Joanne Douglas

Many people have asked me about my long term planning. It seems that’s coming together. Recently I’ve reconnected with an old friend who I haven’t had contact with since the 80’s. Glenn, together with Marc is helping me pulling everything together such as wills, power or attorney, trusts etc. There are so many things I can’t grasp. I can trust Glenn and Marc. 

Trust means so much to someone with FTD. 

You literally put your life in someone else’s hands. A couple of years ago I stupidly let a questionable relative into my life when I was diagnosed with FTD. I was warned by people that knew this individual. He turned my life into a nightmare. I later found out he has a horrible criminal history and what he did to me, he’s been arrested for multiple times in the past. There’s no lower scum in life than someone that takes advantage of someone disabled. The NYC police have taken this seriously enough to get involved. Subpoenaed information now backs up my version of what occurred.
Updates: Starbuck’s and Blimping out
Blimping out:
I want to thank everyone for all their concern and helpful comments on my “walrus-ing” issues. Much of many of my issues are due to decline in my executive functions, meaning I can’t put things together to make decisions. Yes, even basic decisions such as meals become confusing, stifling events. One person currently living in Istanbul, Turkey researched and directed me to an organization here in NYC that helps people that can’t properly shop and cook meals due to illness. I want to thank that global caregiver and hopefully one day we will share some Turkish coffee.
The, “God’s Love We Deliver” charity has been a dream to deal with. As with anything these days there’s a myriad of paperwork and interview process. I downloaded the 4 sets of forms that needed to be filled out. Social Worker, Doctor, HIPPA, and personal info. Riverstone “Memory Club” Milagros and Carmen helped me with the paperwork. I phone interviewed yesterday with Bernadine from GLWD and on Monday they start delivery. I actually spoke with Bernadine about 4-5 times in the last couple of days, driving her crazy as only an FTD’er can. She took it all in stride and was extremely nice and helpful. In this era of cold, unhelpful social services she was an absolute delight. GLWE will be supplying me with lunch and dinner Monday – Friday with deliveries on Monday and Wednesday. The only caveat being on need to be home for delivery, which is between 8:30am and 4:30pm. I’m still not sure why the whole universe isn’t wrapped around me, but I’m extremely grateful for the help.
I’m hoping this charitable service will enable me to be more productive with my time and that additional time can be used to help others. It’s impossible to describe how difficult life is when you spend so much valuable time in confusion because you can’t decide how or what to eat.
The Universe is looking out for me because ‘God’s Love We Deliver’ is starting 2 weeks before my Food Stamps get cancelled. There was no way I could get through and respond to the 26-page document they sent me. NYC Dept. of Health and Welfare requested everything but my used toe nail clippings. On top of that I need a 2 hour hearing to determine whether I can be recertified for 73 cents a day or $19 a month.
Starbucks: Since I wrote my Starbucks blog and a many of the regulars scattered from McBucks ‘181’ a few things have happened. There has been another article in Forbes about Starbucks changing its philosophy as well as much talk on social media.

Last week I was in Starbucks ‘145’ and I saw someone eating the most pathetic looking breakfast in the world. A couple of eggs on a small plain round white plate with flat bacon across the top. Next to it was plastic utensils wrapped in clear plastic. It looked so institutional. I took a picture of this and mentioned to the person that this was just about the most unappetizing meal I’ve ever seen. Starbucks had joined the lower ranks of fast food. The man told me he had a fast food background and there’s a huge difference between Starbucks and fast food. He was passionate in making the pathetic meal in front of him seem identical to food served at the Waldorf Astoria. I was trying to read this well tailored, kempt man. Was he delusional or just insane? We continued to talk and I kept having the feeling I knew this guy. He confirmed that I did know him having previously spoken to him at McBucks 181. He worked for the Starbucks corporation. That’s all I had to hear and I asked if I could join him after I had already sat down across from him. He put a paper napkin over the meal, realizing he wouldn’t be eating soon. I didn’t think about how rude I was till later, so if you’re reading this Damien, I apologize. Turned out Damien worked for the Starbucks corporation and was there district manager. We spoke for over a half our about Starbucks and FTD. He was already versed on FTD from a previous ‘181’ conversation. Impossible to sit across from me for more than 5 minutes and not get FTD educated. I told him about my Starbuck’s blog article and how many felt Starbucks was going down the tubes. Damien noted my concerns and told me he was going to pass them up to his boss and someone up the line might call. (and the check’s in the mail)

Sure enough last night, his supervisor did call me and we had a very nice conversation. She asked what changes I thought could be made at McBucks ‘181’ without a whole scale renovation. I spoke and she was attentive without getting defensive or regurgitating the corporate line. I also told her how important Starbucks was to me, enabling me to live a purposeful life, with FTD. I educated her about FTD and the “Howard’s Brain” film project. All and all, it was refreshing to see a corporation such as Starbucks have wonderful representatives and that were actually listening to customers.

It was just announced that a new small family owned café, ‘Buunni Coffee’ will be opening one block from my building. I’m looking forward to having another place to go. I love Starbucks ‘145’, but it’s a subway schlep.

(New Forbes FTD series patient profile article) 
Joanne Douglas

Forbes- FTD Patient Series When Words Fail -a professor-to-lose-her-power-of-speech/



  1. Howard, I`m thrilled that you followed through and GLWD will start delivering your meals soon!
    And I would really love to celebrate it one day with Turkish Coffee :)It is a small world after all....

    1. Dawn,

      Thank you so much. The internet has made the world a small and beautiful place.

      From NYC to Istanbul with love,


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