Friday, November 2, 2012

Today I won

Sitting here at Starbucks by myself at 7:30am shows how much the city is dead. I have two friends who are small business owners. There businesses are both shut. One because his building is in the affected area, the other because her businesses server is down by the financial district which has no power. Schools are also closed keeping many home.

Just found out "God's Love We Deliver" is closed. Everyone in NYC is effected by Sandy, FTD'ers not excluded. GLWD are delivering to those in shelters from the storm. What a great organization. There doing the right  thing. In society we need to sacrifice to help others that are also suffering. Even though I've become a lot less tolerant for bullshit, at the same time I'm much more compassionate towards those sick or in need. 

Unfortunately for me, that's one weeks supply of food gone. A pit is in my stomach as my budget is getting stretched. I'm fine, but can't cut back much more. When I say budget, there is no actual budget. I can't figure out what is going on financially and never know where I'm really at. My friends tell me I'm okay, so I guess I am. I think :-) 

Have barely left the house this week. The hurricane was some experience. I did go to a party with some friends the night after the hurricane. I had a good time at the party, but everything was going so fast. It wasn't in real life time, I was just having difficulty comprehending everything. I had a good time, but tired out quickly and was overwhelmed. I woke up in the middle of the night thinking of conversations at the party and was having such difficulty. I wasn't sure what I understood and what I didn't. Everything seemed jumbled. It's so easy for me to fall into sensory overload.

It seems like getting anything done these days is a major task. No matter how much I try, it seems that I can't focus. My attention span is incredibly short now. I get distracted by the simplest of things. I have a dry erase board I bought about 8 months ago. This was so I could prioritize critical things to do. I was going to ask the handyman to hang it. It's still in shrink wrap. I used to be very organized and able to multitask. "used to" is key. Things I "used to" be able to do and accomplish are gone forever. There is no magic pill or therapy to bring these life skills back. There gone. I just have to keep trying to compensate by finding other ways of doing things.

I've been wanting to do more since getting off the pill Namenda, but I still get really tired and need to lay down in the afternoons. It's not the same collapse exhaustion from the Namenda. Now, it's just a tiredness that I can only describe as my brain is exhausted. 

It gets so tough trying to pick myself up and get going these days. Writing this blog used to so easy. Now, it's literally one sentence at a time. I feel I need to get one out every couple of days, which I have been. This is the last consistent thing I have going. I'll have nothing regimented or any routine at all if this slips. I haven't been in Starbucks in 2 days which isn't good. Right now I have to be so careful of not falling into the trap of never leaving my apartment. It would be so easy to do. 

It's such a crazy life. I need to spend some time in public and get things like the blog accomplished so I stay a part of the human race. I have to fight to keep what little routine I have. What is routine and normal living of life is such a struggle. My brain now literally tries to keep me from doing anything. Just sit and vegetate. That is what my brain wants me to do all the time. Nothing. It's a daily battle and a test of wills. 

Today I won. This blog is done. 

Have a great weekend and remember to live each day like it's your last. Appreciate what you have.  Life is precious and things can slip and change in a heartbeat. 



  1. Well done Howard! I am glad to read your blog, and appreciate the effort you put into writing it. You won! Your life is precious - you are doing well in this daily adventure - I take my hat off to you. Thank you for sharing your thoughts today.
    God bless you

  2. Great words Howard, feeling a bit down and read your blog... back on track. Keep to your routine and keep us posted:O) Your right, this illness changes perspective on life, I am humbled and try to live life more simple. P E A C E!

  3. Hi, I just came across your blog and I am so amazed and inspired by you. My mom has FTD (semantic dementia variation); she was diagnosed in March of this year, although she's had symptoms since around 2007. She is only 51. At this point, she doesn't follow any of our conversations and even though she can still talk a mile a minute (she has lost a lot of words) she doesn't seem to comprehend much of anything we say to her. She does not understand what dementia is or what it means. I cannot imagine her writing a blog like this. I started writing about it, to bring awareness to others about FTD. This has been devastating to our family. Anyway, I just wanted you to know you are in my thoughts and I admire what you are doing! Take care!

    1. Hi Cassandra,
      I'm sorry to hear about your mom. FTD has both patients and caregivers suffering in so many ways. I know I'm lucky to be functioning at the level I am. I concentrate so hard on the language that I use and try so hard to make this blog as well written as I can. I've been writing it for 15 months and it is so much more difficult now.

      All the best,


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