Tuesday, August 21, 2012

FTD and Making a Life

I'm still here today and I'll be around tomorrow. Once again I'm trying to thrust myself into non-FTD mode. Yes, lately FTD has been getting the most of me and I've been consumed at managing and living  with it instead of living and letting it just be. It's a delicate balance between over thinking and burning out.

It's easy to get caught up in being your own caregiver. Life turns into caregiving and not living life. People ask me how I can do it. Guess what, I have no choice. I do have some help but most of everything falls on my shoulders. I get letters all the time asking what I'm doing for long term care and future plans. I've been looking into it for a few months and considering I'm dead broke. The options are really bad and depressing.

Time to get back to basics. I'm living for today. I was at my neurologist a few weeks ago and besides a bit of a decline in cognitive skills, I'm doing fine. There is no crystal ball when it comes to FTD and I'm not going to get caught up in "end of life" plans, but will instead concentrate on "quality of life" plans.

Yes, I know I have behavioral issues, memory issues and other FTD symptoms. In the last 2 years besides being diagnosed with FTD I've also had to battle cancer and heart disease with a heart attack and 3 stents inserted. 

I'm returning to my motto that FTD can hang out, but my life is mine. 

FTD, cancer and heart disease can get in the back of my line. I have a life to live and live it I shall. 

Hey, I have charitable help with meals, God's Love We Deliver and people helping me survive financially. Is my life is what it used to be? No and it will never return. Have I fully accepted it the way it is now. No, I miss my old life, but it's gone and I need to rock and roll. That means kicking myself in the ass every time I start feeling sorry for myself or start heading towards victim mode. 

To many patients and caregivers are victims of their own minds. 

We all have the right to live a good and fruitful life with purpose and happiness. Does shit happen and things get real bad and real ugly. Yes, that just means we've got to dig in and work even harder to make a life.

I have a life and will continue to make it better. What about you?



  1. Bless you Howard - keep rocking and rolling!

    1. Howard, I am sooo guilty of wallowing in the everyday shit of FTD. I am sick of it. I want to have a substantially normal life and learn to deal with the problems head on.

      The problem is it is easier said than done. I think the worse part of the desease is the loneliness you seek and therefore get, which leaves you lonely or constantly wearing a mask.

      It would be nice to be able to just breath deeply once in a while and exhale slowly. I miss my career, my co-workers, friends I have lost contact with and most of all my self-esteem.

    2. Hey Janet, The losses and hits just keep on coming. Is it going to get easier for either of us? Probably not. Somehow you just have to keep going. There is still a lot to life. Things we can contribute and receive. But, we need to push and get out there or we get nothing.

      All the best,

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  3. I had some typo's. Trying again. :)

    I just found this blog today and I'm so glad that I did. Up until about 3 weeks ago we had no idea what Frontotemporal Dementia was. That all changed on August 1st, 2012 when we learned that my father-in-law had been diagnosed with it. We live in a completely different state than my father-in-law which obviously presents some challenges. We have encountered an even greater challenge however. His girlfriend has known about his condition since December of 2011 at the very least. That is when he was given a preliminary diagnoses of Frontotemporal Dementia (FTD) with Primary Progressive Aphasia (PPA). She has not been communicating with us and has gone to great lengths to keep my wife and her brother from seeing their father and it just breaks my heart.

    We had no idea things were as bad as they are. We knew something wasn't right but every question received the same response from his girlfriend... "there's been no diagnosis and all of the tests have come back fine". This made no sense to us. Especially after we took a trip home over the first week of July and spending some time with him. It didn't take long for us to realize that he wasn't himself any longer and that made us question whether or not the medical professionals he'd been seeing were competent since, according to his girlfriend, there had been no diagnosis.

    To this day his girlfriend has yet to tell us that my father-in-law has been diagnosed. He received his "official" diagnosis on June 7th. Six months after his preliminary diagnosis. Why did it take so long? What possible reason did his girlfriend have for waiting until June to have the final consult where the diagnosis would become official? Why weren't we told about anything? Why was she telling us there wasn't a diagnosis when there was? Why is she now making it extremely difficult for my wife and her brother to communicate with their father? Those are questions we have yet to answer but we are determined to get answers. We WILL get answers.

    So how did my wife and her brother find out there had been a diagnosis? It was an exhausting process that eventually resulted in them getting a copy of my father-in-laws medical report. Obviously there is a lot more to this story but this is your blog so I'll save it for another day.

    You are one strong/courageous man Howard and I thank you for putting yourself out there like you have and sharing your journey with the public. Keep living life the best you can.


    1. Thank you for your comments Jason.

    2. Howard you are a strong guy!

      I wish we lived in your area - we would come over and back you up any time you needed us. You are a real inspiration, and you give me hope.



    3. Hi Alis,

      Wish you lived in my area to. It would nice to have some backup or company.


  4. Thanks - needed the 'get up and go' today!

  5. Howard,
    This is one of my favorite posts - how true.
    Victims of our own minds... have to make the best of what you have.
    You are truly an inspiration... keep writing :O)

    1. Thank you. I'll do the best I can to keep going.



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