Thursday, November 17, 2011

Forbes Magazine: A Businessman's Battle with a Rare Neurological Disorder

Forbes Magazine has written an article about my life with FTD. 

Brain Ventures: A Businessman's Battle with a Rare Neurological Disorder

Forbes just added the article to their Health & Woman editions.

If you've read the Forbes article,  please look at the other articles in my blog which describe living life alone in NYC with Frontotemporal Dementia. I articulate what it's like to overcome everyday obstacles with FTD. 

Articles range from what it like to be misdiagnosed as bipolar for over 6 years to losing almost everything in life. I have also written on fighting and winning battles against depression, isolation, and the constant battle trying to survive with minimal social services.

Monday, November 7, 2011

To Whine or to Wine?

I would love to whine, but I can't. The truth of the matter is I'm not a whiner. I'm an implementer of change. 

I am lucky to have the best friends in the world who no matter what happens, will not give my an inch of slack or let me feel sorry for a myself. We love each other and we treat each other the same way since we were 5. 

I take everything one step at a time. My reality is still this:

My SSD is $1,996.00 per month.
My rent is  $1,636.00 per month (Gas & Electric not included)
That leaves my with an income of $360 per month to live in Manhattan.

My social worker assured me she could get me a rent freeze and a food stamp increase. FTD is recognized as a rare terminal disease.

My DRI rent freeze application was denied.
My appeal to the denial to the NY Housing & Finance was also denied.
A subsequent phone call from a Lawyer with NYC Housing & Finance explained to me I make to much money. She also agreed with me I would get more help from NYC if I was a substance abuser or alcoholic.
Now I just got my new lease and my rent is going up to $1,700.00. That means my income will be $300 per month. There is no cheaper rent anywhere near me. I live in Manhattan and this is the way it is.

Lets not fret over little things, after all there is the food stamp increase application.
I made $2.03 a day in food stamps or $58.00 per month.
The increase not only was rejected, they lowered my food stamps from $2.03 a day to $1.45 a day. My monthly allowance decreased from $58 to $45. At least I know that because of my sacrifice we will not have to burden the top 1% of wage earners with a tax increase.

I'm barely making it and a rent freeze and food stamp increase would have meant I could have had a small measure of stability into the future the I wouldn't be on the streets.

Never mind never seeing my teenage children who live in Seattle. I miss them.

I'm bankrupt and cannot move. There is no place cheaper in the area. I have my support systems and medical help here (Columbia Univ. Med. ctr & Columbia Presb. hospital). My friends are in the area. My neighbors and building staff help me and are familiar with my condition. My support group at Riverstone "Memory Club" is here as well .

Right now I want for nothing because of the kindness of friends. I also have a couple of things going that hopefully will bear fruit. If they don't work out than I will find another way to survive.  I am living on the edge and I hate living on the edge. 

I have FTD and my life is in total chaos and disarray because of it. 99.9% of the world thinks FTD has to do with flowers.

Guess what, I'll find a way out. I really don't care what obstacles the Universe throws at me at this point. I am going to find away out of this hole. 

I ain't heard no fat lady singing yet!

I intend to keep going till there's nothing of me left. No matter how rough each day gets I will meditate and clear my my at night. I will figure out new ways to articulate what it is like to think like an FTD'er and to keep pushing towards greater public awareness of FTD.

I will continue to go to Starbucks 7 days a week and continue the work I'm doing. At this point my intentions are to start working towards speaking engagements and motivational speaking. This is with or without my other projects that are looking promising at this point. 

I believe we are all masters of our own fate. No matter how difficult things become I will never return to the medically induced fog I was in for      
over 6 years. It may not be fair to me or others around me, but that's the way it is. This is my decision to make and I've made it. Forget the easy road. 

Besides dealing with the minor complication of FTD in my life I am involved in many online group/forums/etc. I've noticed in multiple forums people get caught up with a situation and go on harping on a topic or point. Let me pull a Seinfeld and say,"Not that there's anything wrong against joining the band and being supportive." 

One example is a recent person who was justifiably upset and wrote about it. At the end the person wrote there sorry about whining. From that point there many wonderful supportive people went on to discuss whining. Page after page after page went on discussing whether whining was okay, whether the individual was whining and that this was the place to whine if they were whining. I'm sure someone will whine about me writing about whining.

I wrote the following response and I'm publishing it because I'm involved in many groups on and off line. I feel we all need to sit back, breathe and be human. In no way am I mentioning anything that can allude directly to any group or individual.

The following was my response to multiple pages of responses to whining:

To wine or not to whine, or to whine and not to wine. that is the question? I will at anytime share a bottle of wine and whine or not whine with anyone who prefers wining over whining or whining without wining.

After reading page after page of whine or not to whine, I'm sitting here at Starbucks laughing and not whining.

FTD is a strange, elusive, devastating, and absurd type of Dementia. Then again there are people out there that will argue it's not a form of Dementia.

Hey, caregivers and fellow FTD'ers. Kick back and relax with or without a bottle of wine and enjoy life for a moment. We are all doing the best we can and deserve some laughing, crying, whining and wining. Groups can be a great release, but let us all remember we need times of levity even in groups where things get vey intense.

Sit back with your loved ones and pull out the old picture album or bring up some old fun stories. We are living and moving on. Find a way to find some happiness in your life with or without wining or whining.

Howard Glick - FTD'er who is living life with happiness and purpose

Thursday, November 3, 2011

FTD - I'm in the War

I'm consistently dealing better managing the revolving door of symptoms of life with FTD.
Right now I'm taking FTD head on with no caregiver and no drugs (except Namenda) and I'm kicking ass. I am clear, lucid and can articulate well.

The symptoms are there and not going anywhere, I'm just dealing with them differently. For months I wrote about how I would come home from Starbucks at 9:30 -10am exhausted and quiet often be in bed till the next morning. I was exhausted from monitoring my behavior trying to keep my language, sexual jokes and innuendoes etc. at a minimum. 

Sometimes the home health aide would be shocked that I was so exhausted I couldn't answer any question besides what my name is. I would just stand there confused and disoriented and she would tell me to go lay down. 

My neurologist and friends told me not to worry about my language, behavior etc. I was told to stop my monitoring and over thinking because I was burning myself out. In my desire to return to the human race I discounted there advice. A few weeks ago my Starbucks buddies and staff noticed I was staying later and later or returning in the afternoons. Friends also noticed that my behavioral/language difficulties were greatly reduced.

Now it seems I'm getting close to having most of my all energy back. I still don't sleep more than 3-4 hours a night.

I just put it together a few days ago. All the monitoring of my actions and language that was burning me out was finally paying off dividends. I integrated into my life and have successfully minimized these symptoms and now I'm not needing the constant monitoring of myself. Of course I slip, but big deal.

Of course the hours of monitoring, meditation, resting, and mind strengthening exercises are helping. 

Some reports say FTD behaviors have a physical cause and cannot be controlled or minimized by the individual.

The more I find out about FTD the more I realize how much is not known. The Frontal and Temporal lobes cover half the brain. 

I frequently get contact by people whose loved one display new musical talents as there language skills decline. One woman is now mute, but started singing beautifully. Another plays organ. The list goes on. No one understands this. FTD is still an enigma.

"It is what it is" and I'm doing better. Maybe it's just a stage of FTD, but I'm doing better and I will continue to fight to improve every day. 

Does this mean I'm ready to join society being a fully functioning person, I think not. There are so many other symptoms and issues I'm dealing with it is mind boggling. Some of the most difficult and prevalent  are:

1. Not being able to put facts together and make a rational decision. This also causes my judgement to be flawed.
2. Not being able to follow conversations and phasing out in the middle of conversations. 
3. Not realizing when circumstances are changing around me.
4. Not knowing exactly what a person is meaning or intending to say while there talking to me. 
5. Saying things I regret later.
6. Constantly second-guessing myself.
7. Being aware that I'm unaware of what I'm saying and the hurt that's being done.
8. Short term memory loss.
9. Not being able to retain what I read and other cognitive issues.

I intended to write just a couple of symptoms but the list quickly grew. I stopped at 9.

My pet project right now is minimize my non-stop chatting or incessant talking. I get into these modes where I continually ramble on without stopping. It's usually about myself and I don't let anyone talk or pay attention to anyone else. There are a many issues involved in this and it is complicated.  I will get back to you on my progress. I was going to say progress or lack of progress, but to me the efforts involved in managing the symptoms of FTD are a triumph in itself.

Everyone knows how my heart goes out to caregivers, friends and loved ones of people afflicted with FTD. You go through absolute hell.

Those suffering with FTD are in a war 24 hours a day. Whether there isolated in a bedroom at home watching TV (I did that for 6 years), in a nursing home not really knowing what's happening or going on, or battling every day out in society like I'm doing, we are in a war.

I'm going to use the analogy of watching the Vietnam war on TV. We still see the old clips and say how horrible that was. Nobody though has any idea of what that soldier on the ground was going through. That's what it's like living with FTD. You can't explain it or understand it unless your going through it.

Living life with FTD is fighting a horrible war that never ends and everyone else is watching it on TV.

Living with FTD is nothing short of war.

Howard Glick 
FTD'er who is living life with happiness and purpose