Message from Marc Turkel,
Howard and I met at 5 years of age when I moved in across the hall from apartment 1B. Boyhood friends and then for all but two years of our adulthood, we've had our adventures! Now, I'm Howard's power of attorney. If you're reading this, you already know the challenges Howard has with FTD and the miraculous way he's handled these circumstances; Howard's a model of triumph over this monumental adversity with his grit, humor and honesty. Howard and I have together stared down the hard cold facts, he doesn't have the safety net he paid for years while working as a sales executive. Unum, his disability insurance provider has withheld benefits based on a technicality. While Unum has disappeared his disability benefits, his needs don't disappear with them. Howard lives month to month and absent a breakthrough with Unum, his financial situation is not sufficient to meet his needs. If you are someone who can make a difference with a dollar or a hundred thousand of them, will you use the PayPal button on the page to make a donation? These funds go directly to a trust account which will be used to assure his future medical and living needs will be met. Your donations provide both the means to live and, peace of mind for Howard. Like all of us all, he richly deserves to live out these days with dignity. Thank you - Marc Turkel (Apartment 1E across from Howard's, 1B)
The above incidents happened on Saturday. I went home and spent the next two days watching football and barely went out except for my usual stint at McBucks. This is normal for me. I really don't spend that much time in public. I'm sort of in a damned if I do, damned if I don't life. I don't want to isolate myself, so I'm trying to get out more. The only problem is when I'm outside I can't help tripping over my own mouth. On Sunday I finally got someone to help me clean the apartment. I didn't want to be in the apartment while she was cleaning so I went out. Had coffee at cafe Bunni and hung out until it turned into a daycare for screaming infants, kids and irate parents. Then I sat on a random bench in the street where I prothlesized FTD to a young couple. It started rain so we all left. I then realized I had no where to go. The apartment was being cleaned and I didn't want to interfere and I didn't want to spend money in a restaurant.
So I hung out in the rain under an awning at the supermarket that Sandwich boy works at.
It was then I was thinking and became painfully aware again what my life has become and how screwed up it is. A day earlier I had a cop glaring at me wishing I was target practice. 5 minutes later a good friend was pissed off at me for something that she told me not to do time and time again. Then later Saturday night I went out with a friend and got her so angry our date ended after less than an hour after we met. I was also contacted by someone I made plans with and stood him up by forgetting.
As I stood under the awning half avoiding the rain I started crying. It makes interesting reading when I write about angry cops, sandwich boy, angry friends etc., but living a life where all day long your in a war leaving a casualty list because you aren't aware of what your doing is rough. This is my life and it is so screwed up. Funny thing, if I wasn't staying out of the rain under "Franks" awning, my mind would never have gone in this direction. Now I was distraught. When I think of who I am today, I'm a stranger to myself. There is no escape or respite from myself.
How much longer can I go on without running into real trouble? When is my luck going to run out and I'm going to wind up in a police station or an institution.
A friend recently asked me if I exaggerated the stories in my blog. I laughed because the reverse is actually true. I actually tone down my stories because I'm nervous somebody reading my blog will turn me in for being dangerous or incompetent. I told my friend of just one incident and the reaction was "Yeah that's bad" with an understanding and worried look. I also explained my preventative measure so it wouldn't happen again. My life is so out of my control and it's only going to get worse. FTD is progressive and there's no magic pill to take to make it all better.
Later in the afternoon I received a text from a friend asking if she should get ready to join the ranks of all the people I know longer associate with. We went back and forth with me being defensive, saying there were good reasons I wasn't in touch with those people. But she was right. All the years I lived in Seattle I only still had contact with a friend I knew from NYC. Everyone else gone. Many of the people here in NYC who I've known I rarely talk to.
The friends I have are the best in the world. I'm lucky for that.
My life long friend and Power of Attorney Marc Turkel set up a Power of Attorney bank account that will help me. This has been discussed for a while now. Last week I felt totally distraught over it being set up. I feel like a beggar. Many have told me that accepting help is not begging, but I've always worked hard all my life and have never needed to ask for anything. The account is set up so I'll be able to stay with my very modest lifestyle in NYC and continue my advocacy for FTD. I've come to terms there's no way I'll survive outside NYC and I don't want to leave. I've also taken many hits over the last year with many social services being cancelled. My finances without help are upside down. The hope is it will grow and help me with an assisted living facility or long term care when that need arrises. Just writing that makes me anxious.
I'm so uncomfortable writing that I need financial help. I know it's not true but in many ways I can't tell if I'm a failure or unlucky. Unum getting out of paying me my long term benefits on technicality was a big hit. If anyone wants to send a large contribution by check or directly into the account you can contact me through the blog and I'll send you Marc Turkel's address or the Chase Account number to put it in.
When I set up my will. I'm planning to put in a provision that in the case of my demise any donated funds left in this account will be donated to AFTD.
*A Namenda update - I've felt absolutely no negative side effects or changes since I've been off Namenda. The only difference is I no longer suffer from bouts of extreme tiredness during the day.