Tuesday, October 9, 2012

FTD - The Stranger that's me

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)  

Doing better without Namenda. Starting to piss off people again. Was outside filming me just now and some police were getting out of a unmarked police car, going into the supermarket. Of course I asked why they didn't pay the meter since they were off duty. If looks could kill, I just died a Bonnie and Clyde death. I forgot I was filming me and I guess they thought I was filming them and being smug. Nothing of the sort. Forgot I had the camera in hand and just FTD'ed it. Five minutes later pissed off a friend of mine with the camera. She hates being filmed and has told me a million times not to film her. So what do I do? Exuberantly film her and her toddler son. Now I'm safe at home watching college football. Two incidents in a short amount of time is enough for me.

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.

Thank you,



  1. Are you an example to your cause ? Even having your apartment cleaned brings you to tears of self pity .How about that Chic Cafe Buunni in the neighborhood ! I hear its a great place but I have to make a decision to buy a coffee out when I can buy a can of coffee in the market for the same price.Im not telling you how to feel about your life ,that your problem .I have know many people in illness and in dying ,who had no hope of a cure. To them it was a decision to have a good day and it is a gift. The way you go on about your situation really turns me off. I have tried not to read your posts and still i get them.I see that Not much has changed in all this time. Maybe you are still getting others to drink your cool aid ,Maybe I am mean ,even horrible to say these things to you .But if your going to put yourself out there then be ready to hear it . Grow up.

    1. Well, its easy to see why you post anonymously. Who would be stupid enough to tell someone with dementia to "grow up"? Here's a tip: if you don't have anything nice to say, don't waste our time. And if you have a friend, perhaps you can ask for help in stopping these posts from coming to you.

    2. Anonymous, you probably need to go and read a bit more about FTD. And try to open your mind, and understand how it feels to be Howard. FTD type dementia is caused by the slow degeneration of the brain. There is no treatment and no cure, and the strange dementia behaviours are as uncontrollable as a hiccup. Sadly, they look as if they are deliberate - but they are not.

      For those of us who are affected by this terrible condition, Howard is an inspiration. Your truly ignorant comment demonstrates that the work he tries to do to raise awareness about FTD is sorely needed. YOU are the one who needs to grow up, I am afraid - and pray that you never have to live the FTD nightmare yourself.

  2. How easy to comment when you can do so by being anonymous. Unless you have suffered from, been a care giver of some one with Ftd, or a friend of some one who has it, you have no idea of what one goes through. I would suggest to anonymous to go to a carehome and see the terrible toll that this horrible disease takes on people. Everyone has a different story to tell, but the common thread is there in all the stories, that being the destruction that this disease puts not only on those who have it but also on the families that it touches. So anonymous, unless you've walked this journey, you have absolutely no idea of what we are going through. At least Howard is telling it like it is for him and it certainly gives me a lot of insight into just one aspect of how FTD affects people. He has it tough enough without anonymous poo pooing all over his experience. With FTD you can decide to have a good day but FTD does not always give you that option because of the way it affects the mind. I for one, appreciate Howard putting himself out there to tell his story. God bless you Howard for doing so.

  3. Anonymous, You are so rude. You have no idea what you are talking about. For those of us with FTD, Howard beautifully expresses what we are experiencing. It is comforting to know we are not alone. If you don't want to read his blog about FTD, then don't read it, but don't criticize something you are ignorant about. We can't grow up; we lose a little more of ourselves each day. Educate yourself about FTD if you want to understand.


  4. I will start with everyone has freedom of speech. I disagree with what you wrote Anonymous 10:37AM first entry. As a caregiver I will say this is NOT a easy journey for anyone with this disease. For Howard to be on this journey mostly alone without health care and financial support is amazing. He understands what he has and what is to come. Also, nothing wrong with Howard getting out and experiencing life - it's good for his brain to be stimulated anyways. With FTD it affects your behavior among other things. For Howard to decide and follow through with life is a gift and to have a good day isn't an easy task the way his brain processes. Maybe you need to move onto another site if your not happy with what you reading. As explained it's told from Howard's point of view and his life experiences with what he's experiencing with FTD. With that said, have a good day. P.S. Howard I'm glad you got out over the weekend even though it could have been better for you. I cry also it's hard to deal with. Peace:O)

  5. Howard, you can have your friend Mark look into this for you. You should fall under this and be able to get SSD benefits under the compassionate allowance program. You can have him submit the online file or he can call to check into first.
    I know you might have read about this on other sites for FTD.


    Under this disease description: DI 23022.170 Frontotemporal Dementia (FTD), Pick's Disease -Type A

    Stay strong:O)

  6. Anonymous you are vile! Hang in there Howard, there's an asshole in every crowd and for once you're not it :)

  7. Howard,
    How are your days since off Namenda? Waiting for an update.... Hope all is well with you:O)

  8. Howard,
    Miss what you have to say, keep us posted:O)

  9. Would there be a way I could directly connect with Marc Turkel? I'd like to do a Kickstarter or other crowdfunding fundraiser for Howard's care. Thanks!

    1. Hi Halina,
      Thank you. I'm sure Marc would welcome your input. If you email me I can send you his email address/information.

      Thanks again,


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