Speaking of the conference, it was fantastic! They had a new format and things seemed to flow much more smoothly. The presenters did not talk over my head like they often do. I actually skipped the research presentation because this subject is usually so far over my ability to comprehend that I would become quite stressed. So this year, I went to the quiet room. I was supposed to staff the quiet room for a while anyway, so I thought this would work out well. Then I find out I missed an excellent presentation.
That should work out okay in the long run. Because the AFTD live-streamed much of the conference, it will soon be available online. I am looking forward to seeing the part I missed. I will admit that I am also looking forward to seeing my presentation, out of curiosity. Every one kept telling me how good it was, yet I thought I messed it up in a couple places. Oh well, I guess I proved I have FTD.
I really, really, really had a good time at the conference and want to congratulate the AFTD on its success. It is obvious that the entire staff put a lot of work into it. It was not all sunshine and roses for me though, unfortunately.
I kept becoming stressed as I would realize I had lost things. First is was all of my cash, then my new noise canceling headphones, followed by my cellphone. They all were nearly followed by me losing my sanity! While packing, I carefully divided my cash into three piles and hid each in a different bag. I was so clever, at least I thought so. Reminder to self: "Next time, tell someone where you are hiding it!" That's right, I couldn't remember. Once I remembered one, I relaxed and quickly found the next. The third I did not find until the next morning. That morning I also found my headphones after my daughter suggested I ask at the front desk. Someone had turned them in! The cellphone was easy, we called it and "Whew! I had actually left it turned on."
Let me get back to the present. I am still exhausted, yet I have been home for 10 days now. When I am at the conference or any other event I love. (though I can't think of any), I run on adrenaline. I am so happy to see all my FTD friends, my friends from the AFTD and making new friends. I also love learning new information and sharing whatever I can contribute.
All this comes with a price. Once I get home, I crash. I am left with no energy and no desire to do a danged thing. I sleep more hours than usual, take naps and don't do much at all. I understand and expect it now so I don't beat myself up over it.
In the support groups I often see questions from loved ones and caregivers about how their FTD'er doesn't seem to want to do anything but sleep and has interest in the usual things they enjoy or do. Some even regress in their abilities. After asking, I usually learn that there was a big event... a wedding, a graduation, a family reunion, visitors in the home or, yes, even the conference trip.
Just like I described in my recovery process from the conference, it is a common reaction to too much stimulation. Just about any activity or interaction with people can have this effect. Fortunately, in most cases, if we are left to rest both our bodies and our brains, we bounce back to how we were previously.
This worsening of condition can occur after even a visit that only lasts a couple hours or simply a shopping trip. I say "simply" but there is no activity is simple to those of us with FTD. Anything outside our normal routine is a challenge and a drain on our energy and brain. I call it "Brain Strain." Please don't try to force them back into their regular routine, let them recover with the time they need.
I have done nothing since getting home from L.A. except one short visit to the grocery store. It isn't until today that I have any energy to do things. The first time I experienced this, I was frightened because I thought my FTD had taken a nose dive. This reaction also causes the caregivers and loved ones to panic or not know what to do. My answer is always "Let them rest as much as they can and keep their routine as normal as humanly possible."
An expert in dementia, Dr. Oscar Lopez of the University of Pittsburgh, explained to me (after he gave me my diagnosis) that in almost all cases of FTD, if the progression is slow, it remains slow. Unfortunately the reverse is also true. If the progression is fast now, it will not slow down. Because of his belief, he repeated my SPECT scan exactly one year after the one he used to diagnose me. Fortunately, mine is fairly slow progressing.
Because he explained that to me, the first time I crashed after a big event, I had faith that I would recover from it and I did. I am not afraid to push myself to get to conference, firstly because I know once I get there I will run on adrenaline and, secondly, that once I get home I will bounce back eventually.
I will admit this time it has taken longer. I am sure part of the reason is that as my FTD does progress, it will be more difficult to recover. For this trip, though, I blame it on the fact that I had three flights and two lengthy layovers to get there and again on the way back. I scheduled these deliberately so that I could connect with my daughter and have her with me for the long leg of the trip to L.A. I will also admit that I had a horrible meltdown in the Pittsburgh Airport. I was so fortunate that two other passengers stepped up, got me to sit down and get the situation taken care of. When deplaning, two other lovely women made a point of coming up to me and telling me that the check-in person was rude and did not handle the situation correctly. Without these four ladies' assistance, I am sure security would have been called and would have never made it to California.
I hope that my telling you about my experience will help you stay calm when your loved one is having a meltdown during travel so that things do not get out of hand. Also, when others offer to help, allow them to. This is for FTD'ers and those caring for them. I doubt very much if I will ever book my travel to include changing planes and layovers.
Also, remember TSAcares. They are fantastic. The TSA agent in Pittsburgh and L.A. both called my daughter ahead of time to assure me they would take care of me and they did. Wheelchairs were waiting at all the gates and they took me to the next one. The wheelchair attendants even offered to stop at the bathroom. When arriving at the airports, TSA took me to the front of the line and assisted me going through the screening.
When my daughter and I arrived at the L.A. airport to return home, on an early flight, the TSA line was probably about 200 people long. It was early so there was only one line open. I nearly panicked when I saw it and kept repeating "I can't do this, I can't do this." They made sure that I could. The phone number is 1-800-TSAcares. Web address is www.TSAcares.gov. Call about a week ahead of time for best service, or you can call up to 24 hours before your flight.
I am not sure my writing is the best right now, but I hope you got two things out of this: The AFTD Conference is well worth the stress and inconveniece of travel... and, please allow anyone with FTD to recover from any stressful event at their own pace. Also, the event may not be stressful for someone who does not have FTD, yet will be very stressful for the FTD'er.
Hopefully, I will see you all at next year's conference. It will be in Baltimore in mid-April. Info should come out around the first of 2020.
2 comments:
Amen
I can fully relate to the exhaustion after a major event. I am in very early stage FTD and studying full-time in a Masters course. I noticed during the last four or five weeks of the course I was full on with end of semester major assignments in each subject and then exams a week later. I still don’t know how I coped but I’m sure it was just like you running on adrenaline and doing what I had to do.
It took me two weeks to recover. I found that I would sleep my normal 8/9 hours, look at the time, roll over and go back to sleep for several more hours, and sometimes repeat this process. Then need a nap later. I was sleeping 12 to 14 hours a day that first week and it took me another week to get back to normal. I don’t think I achieved anything else particularly during that first week as I was constantly exhausted even with the additional hours of sleep. Until I saw your blog, I didn’t know what was happening to me but I now understand, and can plan for this in the future.
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