Making New Friends

Bear with me for a minute here... Arrrrrgggghhhh!  I just spent an hour an a half writing a blog entry. Of course it was brilliant. I found all the right words. Solved all the FTD problems in the world and  amazed others with my brilliance. Don't I wish? I did have today's blog completely written and swore I had saved it properly. Perhaps the internet gods knew that no one would have wanted to read it anyway.

The main topic was about the joy I was blessed with today. Earlier this week, I received a private message from an FTD'er who was going to be visiting my newly adopted home of Charlotte NC and hoped we could actually meet... in person.

I do hope she had as much fun as I did. I love getting to meet my FTD online friends in person. In this case, we hit it off from the moment she walked in the door. There is nothing like starting a visit with a huge, heart-felt hug! Our conversation never stopped and we never had to worry that when we struggled for a word that the other would interrupt and try to complete our sentences for us. My daughter, my designated drive as well as all the other roles she fills, understands the how and why of letting us think of the words ourselves as well. When I started having swallowing issues, no one asked why I was not eating. Like so many of us with FTD, my new friend and I had a huge amount of things in common. Of course our signs and symptoms varied because, as we all know, NO 2 CASES OF FTD ARE THE SAME.

Shout that from the rafters everyone, please! I keep thinking I should save a file of stock answers to questions. Why does my xxx not do yyy like many of you other FTD'ers can?  Answer: The brain consists of a huge number of brain cells. Your signs and symptoms are determined by which brain cells are killed off and by which ones have been spared so far. It might be nice to have a chart of what abilities we will lose when, but that will never happen.

I often have my diagnosis questioned because they cannot understand how I can still write somewhat intelligently. They don't stop to think that perhaps my writing was better before FTD, and it was. The biggest difference is that back then I did not need to proofread everything at least 12 times. For instance, The last sentence "...still write somewhat..." Before the fourth read through, it still said "...still write someone..." They also have no idea that all my artistic abilities are gone. When I packed up my house to move, I threw away all my trophies and awards for my artwork. They meant nothing to me anymore and only served as a reminder of what I have lost.

I kept the art pieces, but did not want reminders of what I used to be able to do. For me, it is healthier to focus on what I can do now. Past awards mean nothing to me now but it may be the reverse for others. It may be more helpful to keep the reminders of past abilities you had. We rarely react in just the same way, because we are all different when it comes to progression of our disease.

I cannot help but think of my friend, Alan, who now writes beautiful, heartfelt, poetry. He wrote a poem for me when my husband died that is now one of my most prized possessions. My friend, Dale, has found new artistic abilities. When she and her husband came to my aid when my husband died, she gave me the gift of one of her paintings she had done after FTD when her amazing artistic abilities came about. Her husband gifted me a piece of his art of making beautiful things from ordinary stones. All three of these gifts will be treasured forever.

Wow, I really digressed here. I was talking about how much fun we had at brunch and veered totally off subject. Then again, as vast as the subject of FTD can be, maybe it was all the same subject.  Yeah, Cindy, keep telling yourself that!

Back to the subject of enjoying my visit so much.  I have written many times about the joys of attending the AFTD conferences. I have convinced quite a few others to attend them along the way as well. I do believe they enjoyed themselves just as much as I have. 

To me, at conference, my FTD symptoms disappear. The last one I attended in Los Angeles, I had the opportunity to speak on stage. I realized that my Parkinsonism symptom of shaking kicked in while holding the copy of what I was going to say and that caused me to lose my place a few times. When I later saw the tape of it, I realized just how badly I was shaking. It didn't bother me though. I knew my fellow FTD'ers in the audience understood and I figured it was good for all the audience members to see it happening. Then again, they may have thought I was extremely nervous. The thing with that is, that since FTD I can talk to anyone, in front of anyone, including crowds. 

All those inhibitions are gone. If I goof up or someone finds fault with what I say, who cares? I sure don't. Those inhibitions probably disappeared right along with my loss of impulse control. Now, that one does get me into trouble once in a while. Okay, maybe more than once in a while. But... going to an expression I hate... it is what it is. I can't stop it. I can try to reel it in and I definitely apologize often but if I think of saying it or think of doing it, I probably will.

As many times as I proofread my blogs and other writings, inappropriate things do slip in there. The ones I care most about, my fellow FTD'ers, understand and accept or at least forgive. And, that, my friends, is the reason I love spending time with FTD'ers.

Dawn, I loved meeting you today and hope we get many more opportunities. Fair warning though, I will keep encouraging you to go to conferences... if we ever get to have one again.

Oops, one more thought. Politics and FTD, at least in my mind, do not mix well.