FTD and Dwindling Hope

Ah, nothing like the French Riviera in January. Warm weather, beautiful beaches littered with scantily bikinied or topless French woman. I can always have Nice in my mind as I sit here in 26 degree New York.

It's been about a month since I've been to Cafe Buunni. The employee that I had a problem with quit. Good riddance. Haven't really left my apartment at all in a while. I'll get into that later, but I want to focus on my wonderful last week.

Last Tuesday I met with the remaining members of my old support group, "Memory Club" and we took a tour of a Nursing Home in Riverdale. This is a posh area of NYC littered with cobblestone homes. In my quest to get my future set I need to visit facilities in my area so when the time comes, everything will be prepared. 

We entered the NH and it had a beautiful fish tank. We soon were escorted upstairs towards the recreation room. cruising the hallways the putrid smell of urine assaulted us. That smell hung in the air throughout our tour on the three floors we visited. As we walked we noticed the rooms had 3-4 beds per tiny room. You could have a room with 1-2 beds if you pay additionally.  Mattresses were visibly lumpy. Master locks were on the closets and cable locks secured the bedside dresser. One bathroom for every 2 room and a communal shower. The Home wasn't run down, just very institutional. My friend Leo commented, "this is a place to die, not to live." I asked if any resident had FTD. No. The recreational room was sparse and cold. There were a few people my age with disabling illnesses. This was suppose to be one of the nicer Nursing Homes. Another Nursing Home  that I enquired about in the area was having problems with patient abuse. This was a place people people go that have medicaid or medicare and are broke like me. After the 20 minute tour we gathered silently in the lobby. All of us were shaken up. This place was a nightmare. Our Memory Club director was shocked and stating how there was no way in hell she would let her parents anywhere near a place like that. Boris, a support group member who tries to mooch a meal no matter where we go was silent. You know it's bad.

I left there in a state of shock. I'm trying to find a place where friends can check up on me from time to time. I would rather the Universe suck me up to wherever our next destination is than wind up in a place like that. Well, at least there's a shot I'll still get my disability. 

A friend of mine found a large NYC law firm to take on my Unum Long Term Disability case. This firm really was going to put in the resources and do whatever it took to help me get my disability reinstated. The firm was also going to do it Pro Bono. I had a long term disability plan which covered FTD while I was working. Problem was that I was misdiagnosed and by the time it was discovered I had FTD, the allotted time for appeal had passed. I've been fighting this technicality for years. Unum knows now that I had FTD while working, but they don't have to pay so they don't. That's why they are the No. 1 disability company in the world. At least now I had this law firm on my side. I knew it was a 50/50 shot, but there was hope and that was keeping me going.The firm worked very hard to find  a legal path towards getting me my disability and I appreciate all there help.

On Friday I was contacted and told the law firm exhausted all of the directions they were looking and there was no legal path for getting my disability reinstated. I've been fighting tooth and nail for years and now it was over. Gone with it was any hope of living a decent lifestyle. Gone was the thought of being able to visit my children a few times a year and help them financially. If I wanted to see them at all, it would be at the generosity of others or I'd have to be begging. Gone was the thought of possibly ever having a car or taking even a short vacation. Gone was thought of visiting Israel again. 

Hope is a funny thing. Though sick and slowly losing my mind, I never gave up that things could improve a bit. That was till now. Now, hope is officially gone. All of a sudden I'm picturing my only option in the future would be the urine laden hallways of the Riverdale Nursing Home. My reality was now settling in. My rent is $1,700 and my SSDI is $2,000. Because of some generous people I can stay another 6 months or so before moving. Then where, out of NYC I guess before I become a ward of the state. NYC is expensive and I don't live in an expensive apartment. I don't know where I'm going to go or what I can afford. the last year has had me lose medicaid, medicare pharmaceutical help, food stamps as well as other services. I keep getting cut back while I'm cutting back. There's nothing left to do but figure out how to move on. I spent the weekend in a panic state. I simply could not put things together on what to do. I've never felt such a loss of hopelessness in my life. Simply nothing to look forward to.

Lately, I've been losing words and have been having more difficulty talking. This weekend I was shocked how much stress was affecting me and how quickly it could degrade. I spoke with my friends Alice and Howard. We talked about my friends having a conference call to figure out my options. I simply can't put it together and have no idea what to do. I don't know whether I'm coming or going. I have friends in my area and the FTD medical expertise here that's extremely limited in this country, but simply no money to stay.

I've a few months to put together a plan and implement it. It's Monday and I'm back at Cafe Buunni and  I will fight on. I knew they would be getting tougher and I'll just have to keep going and let the chips fall where they might. My choices and hopes in life are quickly becoming few and far between. Yet, I'm determined to get back on the blogging and filming "Howard's Brain" bandwagon. I've not been able to keep up with all the groups I belong to. Just can't handle as much anymore.

In my push to further awareness I've reached a couple of milestones. This blog has crossed over 50,000 people viewing the pages in the year and half since it's inception. The FTD Patient Support Group I created has 51 members and is over a year old. I reached 55 years old a few weeks ago and though I've slowed a bit I'm still kicking.

Things are rough and there going to get much rougher. Not every book has a happy ending. There were times over the last month where I've never felt so all alone and just wishing somehow the Universe will be merciful. We all live, we all die. What matters is how we live while we're here and I'm determined to keep going for as long as possible. 

Time to head back to the Riviera :-)

Howard