Here it is, already a week has passed since this year's annual AFTD Educational Conference. It was indeed educational and I learned several things I did not already know. I was also reminded of some things that I knew, but had forgotten. The most exciting part was meeting some people I had not previously met, at least not in person.
I was thrilled to meet quite a few "newbies" to the AFTD conferences and took a couple under my wing to ensure they got the most benefit from all that was offered. I wish I could have met more. After getting home, a few people commented online that they were there but did not get to meet very many of us FTD'ers. This year, we did have badges to indicate that we were FTD'ers, which I appreciated greatly. There was nothing, though, to indicate who were first timers. I think this would help enormously at future conferences.
While the pre-conference (Thursday evening) dinner was in the planning stage, the venue insisted on having assigned seating. I was totally opposed, but quickly loved the idea. It mixed up those of us who had been to previous conferences with those who had not and provided an opportunity to get to know some new people.
The opening speaker was Dr. Marsel Mesulam, a leading expert in FDA research. I learned some new things from him. I learned that someone's FTD can be genetic without testing positive for the known genes. There are most likely more genes that cause FTD that are as yet unknown. I was also amazed by a slide of a brain from someone with FTD. In a normal brain, there are no spaces in the cerebral cortex. In an FTD brain, spaces are quite noticeable. I was fascinated with his entire presentation. I only wish he would have spoken slower so that I could absorb more of the information he presented.
All of the speakers whose sessions I attended were excellent and interesting. This year's breakout session for different areas of interest were better than past year's. There were several sessions only for those of us with FTD. There was even a session of improv that turned out to be one of my favorites!
Something I was reminded of, is the role of a Neuro-Ophthalmologist. I have written many times about the vision issues that often come from FTD. I had been to this type of doctor many years ago when we were trying to determine a cause for the extreme headaches I suffered, but never stopped to think about seeking one now. This is now on my list of things to do. There are no neuro-ophthalmologists near my home but it seems like a good idea to consult with one, even if I must travel.
For me, the best part of the conferences is the opportunity to socialize with others with FTD. My daughter, who accompanied me to the conference, commented "Mom, you are a social butterfly!" The reason she said this is that she has not seen me like that in many years. When surrounded by those with FTD and those who are knowledgeable of FTD, it is easy to let my hair down, relax and be myself. No one cared how often I tripped, lost my balance or couldn't find my words. Because I knew that no one would judge me, I was able to relax and be myself for a change.
I was awed by the amount of work and effort that the AFTD must put into making these conferences a success. There must be thousands of tiny details that need to be addressed. I saw nothing that was not well planned in advance. It also amazes me that each conference I attend is better than the last.
Finally, one thing that I am extremely proud of is that, for part of my travel, I did it alone! I took a shuttle flight in a small plane to a larger airport and survived a 5-hour layover. I managed to fend for myself, even found food for myself, without getting lost once. I met up with my daughter at that airport and finished the trip to Chicago with her. For the return trip, I could not coordinate our flights to travel any of it with her, unless I paid several hundred dollars additional. I assured her that I was comfortable doing it alone. She did make sure I got to the proper gate at Chicago's O'Hare airport and that I had a snack and beverage so that I would not wander off. I then flew alone for the rest of the trip.
One thing I have learned about life with FTD: Don't be afraid to ask questions or ask for help. I have no qualms about asking for directions, whether in a busy airport like O'Hare, or in a local department store. I had arranged for wheelchair transport all through my travels. In two instances, the requested assistance was not there, once getting off a flight and once getting onto one. On the arriving flight to O'Hare, there was no one to meet me in the jetway. I managed to navigate the jetway without falling this time. My daughter walked nearly backwards the entire length, warning me of every bump, change of elevation and any obstacle. When I made it to the end, I went to the counter and insisted they call for a wheelchair. They were not happy to be interrupted, but eventually a wheelchair attendant did arrive. On the return flights, at the gate for the shuttle flight, to board, one must navigate a steep and narrow ramp with little side protection and cross the tarmac to the plane. There was supposed to be a wheelchair attendant there as well to take me down in an elevator and across the tarmac. I just kept telling every employee there that I must have a wheelchair. They eventually pulled one of the ground crew inside to wheel me down. As is often said, it is the squeaky wheel that gets oiled. I think I am entitled to feel proud of myself. I would actually not be reluctant to make a trip by myself now.
Another thing that I know I have mentioned before is "TSA Cares". You can find them at www.TSAcares.gov. They take all your travel information and arrange for assistance getting through the TSA checkpoints without standing in line or going through unnecessary screenings. I didn't even need to remove my shoes!
As a side note, when going through security at our tiny little airport (only one gate) our hands were wanded to detect any traces of anything that could possibly indicate exposure to explosives. I tested positive! I then was treated to the only pat down I have every experienced. They were extremely nice about it and it was not uncomfortable. I even thanked them for doing it because it increased my comfort in the screenings. The only thing I could figure that caused the positive test was the purple hair color that I had added to my hair to raise dementia awareness along the way and at the conference. I won't be doing that again!
Again, I congratulate and thank the Association for Frontotemporal Degeneration (www.theaftd.org) for the education conference. Well done, my friends.
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