It is impossible to inform people often enough about the AFTD www.theaftd.org.
The AFTD (The Association fpr Frontotemporal Degeneration) does a lot of things for those with FTD, those who care for someone with it, or those whom just want to know more about it. In short, their mission is Research, Awareness, Support, Education and Advocacy.
To me, this is the first "go to" place when you or a loved one receives the dreaded diagnosis. It is also the place to go if you are having difficulty dealing with the disease.
One of the things the AFTD does is to organize and host an annual Education Conference. It is open to medical professionals, those who have FTD and their caretakers. You can read more about it by clicking on the link in the first paragraph.
This year, the conference is going to be held in Minneapolis, not close enough for a road trip, but only a 2-hour flight. Last year's flight to San Diego scared me too much to attempt. This year, though, I am going! My sister has agreed to accompany me, not only to keep me safe, but also to learn more about the disease. My husband, who refuses to fly anymore, gladly agreed to fund our trip. As much as I would like him to attend the conference, I am also sure that my sister will learn more than he would.
Even though it almost three months away, I am already getting excited. Many of the members of the online support group I visit daily will be there and I will be able to meet them, finally, in person. To meet them, as well as all the other people attending who have been diagnosed with FTD, is worth the trip in itself. Priceless, though, will be learning more about FTD and how to cope with it. I believe you can learn more from those who have FTD than any literature available. If they don't know it, they usually know when to direct you to find out. Of course, this is probably going to be the AFTD.
I am so excited that I insisted on making all the arrangements now! My husband left it to me to do rather than doing it for me because he felt certain I could handle it. He also knew that even if I didn't ask for help, he would know if I did, by how frustrated and angry I was acting.
A simple trip like this, back before FTD, I would arrange in an hour or so. Not anymore. This is my third day of dealing with it. I am proud of myself by the way I handled it. I spent the first day (when I say day, I'm talking about the 4-hour time span in the afternoon when I am more aware and with clearer thinking.) I did the actual online registration for the conference. So far, I only know of one mistake I made, but I am confident the AFTD will help me work through that. I also did some research on flights. We will have to take two flights each way... a local commuter jet that will get us to a major airport, then the flight to Minneapolis. I got as far as printing out lists of possible flights before my brain balked at doing anything more. Second day, I got back into the flights and actually made the reservations. I think I got everything right. I hope we don't get to the airport and find out we have to buy new tickets because I screwed something up! I was confident enough, that I went ahead and made the hotel reservation as well.
Today, the third day of preparation, I organized all my paperwork into a clear and workable order. I also contacted the hotel, via email, for information on getting from the airport to the hotel and back. I didn't want for us to have to rent a car and try to find our way around a new city. I would have been freaking out, and my poor sister would be trying to figure out the directions plus deal with me. Turns out there are plenty of shops and restaurants right across the road and the hotel shuttle van will transport us. Turns out that they do not offer a shuttle to/from the airport, but he gave me information on a private shuttle company that they recommend. I think I am going to go that way since it is half the cost of taking a cab.
Three days to do what I would have done in one hour... three days!!! Makes me feel a little pathetic, but much stronger is the feeling of pride I have from doing it! This should give you one idea of how FTD affects one's life.
Now all I have to worry about is if my luggage is too big or too heavy and what we can and cannot pack. Actually, I know at least my luggage is too big but don't know about my sister's. Then I need to figure out whether to buy a new bag or pay the fees to use one of the ones I have. Are you suspecting yet that I will obsessing for the next three months? Wish us all luck... me and both my caregivers, my sister and my husband. They will get sick and tired of hearing about it, I am sure!
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