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Friday, May 20, 2016

Life with Lee and Maggie and bvFTD - Guest Post By Cindy

I came into this relationship with full knowledge of Lee's illness from the start. He was very open and honest about it, and told me all about it on our first date. I did all the research I could, but really didn't find a lot that wasn't on his blog.
Together on vacation in New Orleans in November, 2015.

I knew when he stepped on my porch the first time that I wanted him in my life. I decided after the “research” that his bvFTD didn't matter. I was willing to take him as he was, and for as long as we had. That was October of 2011 nearly 5 years ago. According to our first talk he should have been gone by now.

There have been changes but not as severe as I had anticipated in the beginning. Most of them seem to be subtle until you look back to the beginning. When I say the beginning it is the beginning of our relationship.

I will not say it is easy, but love really can overcome a lot. REALLY!

I see the same changes Lee has mentioned and more. For instance: Anger management is top on the list. Getting motivated is right up there as well. Sequencing, and what I call “hermit mode” - When he hides out in the bedroom in the dark for hours at a time.

Patience has never been one of my virtues, but it certainly has come a long way in the last 4 years. I have always been a very structured and scheduled person. Well that has gone out the window.
Day to day would seem pretty normal to most people. But then what is normal? Before I go to work in the morning just like anyone else, I kiss him goodbye. I always honk when I pass the house so he knows I have left. His sleep is very irregular.

We may text throughout the day and make tentative plans, they are tentative until they happen. Some days something as simple as going to get milk is a challenge for him.

I am learning how much to push him to do things as simple as wiping off the kitchen counter. He is “always” right. It does not do any good to tell him different. Or prove him wrong. But then he is a man, you know. At this time he is in the “hermit mode” as I write this. I really miss our time curled up watch smarmy movies.

The next issue is when he is absolutely sure he has told me something, and he hasn't - and vice versa. I have considered taping our important conversations, but I am not ready for that yet.

He is one day at time, and I am plan! Plan! Plan! ahead at least a week. I have said all this to say -
Everyday every person is different. You each must make your own plans, and ways of coping with bvFTD.

Love is the key to making the best of the time that you have. Secondly, talking about what is happening, and how you personally will deal with it and the changes taking place. Trust! You must have total trust in each other. You also need some one you can talk to about what is happening. I had 1 session with a counselor who specialized in Alzheimer and it helped a little. He had done some research on bvFTD, but mostly talked to me about care giving and memory issues.

As I said, "Love is the key." We enjoy each other a lot.We laugh often. We work in the yard, and share the household chores like cleaning and cooking. We hug, and snuggle on the couch watching TV. We still hold hands when we go shopping. We try to act "all grown up" when we have to. We will not let this disease take over our lives. We make the best that we can of each day.

Maybe I will go into more detail the next time I write.

Feel free to ask me any questions and I will try my best to answer them ...From a fiances point of view,



  1. Thanks for this update, Cindy. Reading about your love and support is an inspiration. And thank you, Lee, for this blog. The specific challenges of FTD are underreported in the media and, over the years, your posts have been highly educational, featuring a welcome dose of humor.

  2. I'm new to FTD. Not official yet. I'm 42 and have a family history I wasn't aware of until last year. I'm overwhelmed and having major anxiety. I'm so scared. Don't know what to do. Your blog has been so helpful.Thank you

    1. Take heart! I am still here, and most days are still very good. Of course, some days are better than others. -Lee

  3. My mom was just diagnosed with picks disease ! For a long time we have been noticing changes in her speech and personality . Last weekend she had an episode Nd was admitted to icu , she didn't know her name or any family or where she was. This is when we got the news it was picks disease . I had never heard of it . Hers is progressing pretty fast and it's heartbreaking . Glad to see you have been doing well for so long . Connie

  4. I wish the best for you, and your mom. Have patience, and remember, some days are better than others.

  5. Thank you so much. I will continue to follow your journey and wish you all my best too.

  6. Hello. I came across your blog (and another one) while doing a search for "MRI normal". It looks like where I am now is around where you were when you started this blog. I am going through the process to determine if I have FTD as that's where all my symptoms point to.

    Unfortunately I am also dealing with congestive heart failure at the same time. If you are interested in checking it out and/or have any suggestions from what you have dealt up to this point with you can come to my blog supplementalhealing.com.

    I use myself as a lab rat to test things out for my conditions (beyond the two mentioned) and have a method that gave me real improvement. That said it is hard to promote it as viable if I do not have an official diagnosis.

    Take care and keeping pushing forward.

  7. Replies
    1. I am working on it. I am still doing very well. I have been very busy, but will write something when I can get motivated to do so. I really do not have much to say right now.