Saturday, April 22, 2017

Something To Look Forward To

I have mentioned the AFTD before, but just in case you missed it, it is the Association for Fronto Temporal Degeneration. I have also mentioned that their annual education conference is coming up. Right now, it is 12 days away. Okay, it is actually 13 days away. The difference is that the online support group for those of us with FTD happens the evening before and it's only 12 days till that.

The get together is just for those of us with FTD and the caregiver that has accompanied us. Someone asked me a couple days ago how can I enjoy something like that. After all, it is in a pub/restaurant, is most likely crowded and noisy with lots of commotion. Often, when faced with similar circumstances, I become extremely stressed and need to leave. Good question! The fact that it is one of the rare instances during the year that I consume alcohol, that definitely might explain part of it. I think the primary reason is that we, like everyone else, can be in an "up" state. This is probably excitement, adrenaline or whatever you want to call it. Think about it, when you are relaxed and having fun, isn't it easier to keep going?

The other day a few of us with FTD were video chatting and we all said pretty much the same thing. We go to conference and have a great time, make it through a couple very active days as well as the travel days. Then, we crash. I have the week after the conference blocked out for recovery time. Also, the AFTD provides us with a "Quiet Room" where we can go and recharge ourselves or calm ourselves as necessary. No activites, just quietness, in that room.  Just like in our everyday life, we do get sensory overload which triggers so many of the bad aspects of FTD such as agitation, cognitive decline, anger and the list continues on and on. By giving us a place where we can go off and be by ourselves, we can make it through the day. Since it is held in a hotel conference center, most of us can go back to our rooms for a bit if necessary as well. I know last year, my daughter and I took our lunches back to our room so I could decompress for an hour.

It is not just because we look forward to the conference so much, it is the joy we find in being surrounded by people with the same disease, the same symptoms and the same frustrations. We don't feel like we have to pretend, we can let out hair down and not worry about what the others are going to think about us because we all understand. If we are stumbling around after having an alcoholic drink, we don't have to worry about others thinking we are drunk, we know it is the FTD.  If we are speaking to someone and start stuttering or can't think of words, we know we won't be judged. We share information.  There are questions anywhere from symptoms to help with getting Social Security Disability approved.

This conference is also for professionals, in fact in the beginning years of this conference, those with FTD were not invited.  So, I'm sure you can understand that there is a lot of information presented on everything from the latest research to care decisions, ways to communicate and so much more. Those of us with FTD are also welcome to attend those sessions as well.

One of the sessions this year is a panel discussion with three pairs of someone with FTD along with their primary care partner. I am so honored that my daughter and I have been asked to be part of this panel. If you regularly read my blog, you know how important it is to me to share any and all information that I have in the hope that it just might help someone else. As I say repeatedly, I have experienced dementia from both sides... as a care partner and with FTD. I don't have any more information than the next person, but it does make it a bit easier for me to see the frustrations that both sides are experiencing. I know I will also learn from hearing the stories of the other pairs.

Throughout the conference day, there are break out sessions to provide everyone choices to sit in on the subjects that interest them most. There are also break out sessions for those of us with FTD to cover subjects that are more interesting to us. The nice part, for me, is that it is only us. You have to have FTD to  join in these sessions. Again, no threat of judgement.

I will admit, that despite all the information we will hear and share, the part of the conference I look most forward to is the camaraderie. I look forward to meeting, face to face, those I talk with online. I look forward to all the hugs, all the laughter and all the understanding that we share. This will be only the second conference I have attended. Others have attended many more than that, have more knowledge than I do and know more of the people. That does not matter though, we all are on common ground. It is the only place I have found where I feel totally comfortable to let my hair down and have a good time.

For instance, last year, at the reception following the conference, I spilled a full cup of coffee all over the buffet table. It happened because I was trying to fix my cup of coffee and hang on to my cane at the same time. I was mortified until I realized people were laughing with me and several told me about similar experiences. They didn't care one bit that I am so clumsy that I spill things, because they do too!

As I said, 12 days and counting!

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