Saturday, September 21, 2013

Time to Live

License Update: Received notice from NYS DMV. They actually returned my $300 certified check. A letter explained the 1978 case of me driving an uninsured vehicle was now terminated. Reason, a new case was being put together against HGFTD. I can't get into details because it's now a legal matter, but the end results are: New Arizona Drivers License

One pic - misdiagnosed in a medically induced fog.
One pic - diagnosed bvFTD and on no meds.
Can you guess which is which?

Got a new Arizona Drivers License and my $300 back. 

Below you'll find a message I left for the FTD Patient Support Group. Following much positive feedback I've decided to post it here for FTD'ers and everyone else.

Everyone in this group is fierce or you wouldn't be here. We all have a shock and a mourning period we go through. We get sick, then we get misdiagnosed, then we find out we have an incurable, untreatable and unstoppable disease. Then there's the finality of getting disability knowing we will never work again. Many don't ever recover. 

This is the point that we get up and fight. Anyone can get sick and decline. Anyone can get sick, decline and keep living life. All of us have talents, if not find them. We all can make a meaningful contribution to society and humanity. That has to be the focus we return to after we throw up after the shock wears off. We get up and we continue on. Fuck the pain and fuck losing your mind. We all have so much to offer. Plenty of time to rest after we're dead. Nows the time to live, not die.

Literally losing your mind to FTD is a different type of illness. For most the beginning and middle stages are devoid of anything that would make us feel physically ill. No pain like cancer, no arthritis, cane, braces or medications needed. 

Most of us never knew what hit us. Me, I used to fly 120 flights a year and manage businesses. Never had a clue what hit me. I look back now and businesses that I visited every few months must have thought I was having a bad day. 17 year track record with regular promotions and not a blemish. I still remember clearly running into my best buddy from business in some far away city. He told me never to call or speak to him again. I was shocked. I left work on disability and was called regularly for years by friends and HR to see if I was okay and when I'd be returning. I never returned a call. I had no idea what was going on. Kept expecting that magic pill, shock or operation would cure me.

I became aggressive breaking cell phones and losing my temper. People who knew me were shocked. Who was I. I was me and nothing changed, but everything had changed. What a strange dichotomy.

Who is Howard Glick now. I'm a guy whose has FTD. I'm a guy that thought I'd be dead by now.  I feel corny in saying it, but I've dedicated the remainder of this life to serving mankind. Don't know how to express that verbally without sounding like an asshole, but that's what I do. From morning to night, my day consists of FTD awareness and projects. 

3 years ago I hit rock bottom. Overdose suicide attempt with 4 days in a coma. Then losing my soulmate and finding out  two weeks later I had FTD and needed to make my "end of life" plans.

Barely surviving a "suicide attempt" only to be told to make my "end of life" plans. Irony

Went bankrupt, on SSDI and can never work the career I loved again. Unum, my long term disability company, weaseled out of paying me my benefits even though scans proved I had FTD while being covered. Some friends ran for the hills. My kids thought I was nuts. Cancer and heart disease. Losses, losses and more losses. I'm different but still here. People then treat you different, like a child. Your life consists of social services and waiting to die. 

Everyone got there violins out now. Screw the violins and the (((()))) hugs signs. Don't want them or need them. Don't care that my fridge is empty or I've not a table or chair in my apartment. I've a life to live and I'm living it. Can't be concerned with the bullshit minutia of everyday life. FTD is progressing and it's reality has me constantly falling back to regroup, then moving forward. I'm on the clock. 

I push hard and don't back down for an instant. Each time we slow down, FTD makes it harder to get up and going again. Sucks the motivation and life out of us. Each time we find ourselves in bed at 3pm, it's harder to get out of bed and then fight the depression that accompanies the sluggish slow down. Me, I'm charging ahead up and out all morning and most of the day into the evening. Screwed up my routine this morning and didn't brush my teeth. Was dressed and laptop backpack on. Realized it when I was about to go out the door. Frozen I didn't know what to do. I'm normally undressed when I brush my teeth and now I'm dressed. If I skip it I might never brush them again. Teeth are the only thing in life that if you forget about them, they just go away. Already back down to once a day brushing. If I undressed and brushed them I might wind up back in back bed and not make it out the door. Stood in paralysis. Then undressed, brushed, dressed and here I am typing at Starbucks.

*A woman just came up to me and asked me how "Howard's Brain" is going. Told her fine. Guess I lost my poker face. She asked if I remembered sitting with her and her 3 friends. Oh yea. She left and I turned to my buddy. Told him I lied and he said he knew and understood. This is a frequent happening. 
The chicken or the egg? At this point in life, I couldn't give a shit about remembering the person, but the FTD awareness she and her 3 friends have might save someone else 6 years of misdiagnosis hell. I would like to keep my teeth though :-)

Had a call from my Israeli group member. M contacted a rabbi here in Scottsdale, AZ to get me some help. Was shocked to get a call. Had a good 30-45 min conversation. Real life, couldn't give a rats ass about my empty fridge or nothing on the wall. What I need help with is getting my work  organized so I can be more productive. That's what's important to me now.

BTW- my chest pains have subsided. Might've gone away with the 22 pounds I've lost since leaving NYC. Don't worry, not starving. Just eating rabbit food.



  1. Howard, this is one of my favorite posts yet. I LOVE getting a glimpse into what a person with FTD feels, sees, thinks, experiences. My Mom shares some with me, but I don't want to ask her 20 questions each time we are together, I try to NOT talk about this stupid disease and just enjoy our time while we have it. I guess I'm like an addict with FTD knowledge. Other than a cure, I want nothing more than to be able to understand what my Mom is going through, how her brain is working, so I can be the BEST daughter and someday carer around. Your posts are helping me to see what some of her struggles are and have an inside perspective on them. Your blog, will make me a better care giver to her when the time comes. Thank you Howard for making a difference in my life and my Mom's. Keep up the good work!

  2. Scottsdale sounds like a really friendly town; you have alot of friends already.


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