This is a support blog for people that have been diagnosed with early stage FTD/dementia. This blog is dedicated to helping people help themselves as well as increase awareness for caregivers, friends, and the medical community. It will include finding groups, medical care, public assistance, having fun again, making new friends, dealing with old friends, family, depression, and isolation.
Dementia is a lifestyle change. You can live a happy, productive life with dementia.
Friday, June 1, 2012
Help has Arrived & Forbes FTD Professor Interview
(New Forbes FTD series patient profile at the end of article)
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
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
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
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.