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Monday, October 15, 2012

The Meaning Of "Totally Disabled" By bvFTD Hits Home

Slammed by bvFTD, The Meaning Of "Totally Disabled" Hits Home

This past weekend was a minor disaster. I always say, "Some days are better than others!", and this weekend really brought the truth of those words home to me.

This weekend  was smaller with just the white canopy.
I had been doing very well for quite a while, and had assisted my friend with a couple of craft shows. I helped her to set up her vendor booth, and even helped out as a salesperson during the craft shows. Though it was very tiring, and required a few days afterwards to recuperate, I did very well by all accounts. I was feeling pretty confident about things, so I committed to assist with her last outdoor show last weekend. I had also said I would repair a leaky toilet, and replace an outdoor light fixture. I know now that this was a mistake. What was I thinking?

The week leading up to the show was a rough one. I forgot to take my medications a couple of times, and the nerve ganglia on the bottom of my left foot became inflamed. These things may be related, but I am not sure yet. In any case, the whole week was one miserable thing after another. I just stayed home, and avoided people as much as I could. That was pretty easy because I was really broke, and couldn't afford to go anywhere, or do anything anyway. I got through it, and by Friday was feeling better. I packed up for the weekend, made sure Kroozer had plenty of food and water for a couple days by himself, and headed North for the Craft Show.

Set up for the Show was Friday night, and the craft show itself was all day Saturday and Sunday. Friday went well, and the 10 X 10 foot booth was all set up under the canopy well before it was dark. Having attended many trade shows, and organized a few very large ones when I was President of Stellar Games, Inc., I had a lot of experience setting up a booth. My experience told me that the booth looked great, the products were great, but that the location was terrible, and sales would suffer.

A few hours later on Friday night my allergies attacked in force. I was sitting on the couch, and all of a sudden my nose started running, my eyes started itching, my throat started itching, and I sneezed a few times. Within minutes I was all stuffed up, and miserable. I had already been taking antihistamines that day, and took another right away. It did not help at all, and I was unable to sleep Friday night. I spend most of it sitting up on the couch just trying to breathe.

Saturday morning came early. I maybe got 2 hours of sleep Friday night. Got to the craft show, and opened everything up. It only took about an hour to get all of the merchandise out on the racks and tables. Everything looked great when the show opened. Of course because of the lousy location way down at the end of the street blocked by a huge food truck there were very few customers. The fact that it was freezing in the morning, and then cloudy, cold, and rainy all day did nothing to improve matters. Due to the location sales were a little more than 10% of what I would have predicted. After 10 hours out in the freezing cold I was exhausted, and in quite a bit of pain from my foot which wasn't doing well standing on concrete for so long.

At the end of the day my friend went to talk to the show management about a refund of some sort because of the lousy location they had forced on her. She returned with their best offer. No refund, but we could move the booth to a better location, and have 2 spaces because somebody didn't show up. I gotta tell ya that this is a crap offer, but does show that they knew they had really messed up sticking us way out in no-man's land. It would have taken us between 3 and 4 hours to take everything down, pack it up, and then set it all up again in another location. We would have been working well after dark. We really couldn't use the extra booth space because we did not have an extra canopy, and rain was predicted for Sunday.

I left the decision up to my friend as it is her business. I was tired, but figured if she wanted to move I could tough it out for another few hours of labor. She decided it was not worth moving for just the last day of the show. We left.

I got home, and went right to sleep on the couch. My friend woke me up to feed me some dinner, and I went back to sleep again right after I ate. I slept for 10 hours straight. I was exhausted.

Sunday morning, after a comatose night's sleep, I felt better. I had taken some ibuprofen, and antihistamines, and was feeling pretty good. It was much warmer, but windy. It was so windy that when we got to the show the canopy was blowing around, and it looked to me like one of the corner poles was bent a little. Within a few minutes the wind blew all of the clothes racks over for the second time, and tipped over a table. It was nearly noon, and the street was nearly empty of potential customers. My friend decided we should just pack everything up, and leave before the wind did any serious damage to the canopy. I think this was a good decision because the wind and weather got worse throughout the day, and the location also got worse because several of the booths near us had already packed up and left. There was now about 150 feet of empty street between our booth, and the next one towards the main shopping area, and it was still blocked by a huge food truck so nobody could even see we were there. We left, and good riddance!

We spent the rest of Sunday recovering, at least I did. My friend was fine. I was not feeling fine at all. I am spending Monday lazing around the house watching some TV and resting. I need it. I just cannot do this kind of thing any more. I thought I could, but I cannot perform at a normal level of competency consistently. A day here and there I can do just fine, but then I just collapse in a heap afterwards. Problem is that I cannot tell exactly which days will be the good ones, and which will not.

Too many people. Too much responsibility. Too much commitment. It was all just too much for me to handle, and I really didn't have to do anything, or handle anything at all. My friend did all the hard work, and made all the decisions. I was just sorta there taking up space. On a good day I could manage it, but not on one of my not-so-good days. This weekend at the craft show was a cold and damp reminder of just how much bvFTD has affected my abilities. I guess I really am "Totally Disabled" in that I can no longer be consistently competent to work even at a very undemanding task like helping a friend at a craft show. I will say that it is a hard pill to swallow, but I am finally starting to be forced to kinda admit it just a little that I can sometimes no longer do quite everything I used to be able to do as easily as I used to be able to do it ...maybe!

On a side note: I did force myself to fix the toilet, and replace the outside light. The two things together only took a few minutes. That was the easy part. I told my friend that I would not be available to assist with any more outdoor craft shows. I haven't totally made up my mind about the little indoor ones. They have their benefits in getting me out of the house, and talking to people, but they still wipe me out both physically and mentally. We shall see.

Comments are welcome.

Tuesday, October 9, 2012

bvFTD Symptom: Half-Track Mind

I would  like to address a symptom of bvFTD that is mentioned often (at least anecdotally), but rarely explained in terms that relate to a real life situation. Actually, I see it mentioned in personal accounts of people who have been diagnosed with bvFTD, but I really do not see it mentioned or explained in the medical literature. I am talking about my inability to multi-task with bvFTD. I must now take a very single-minded, one-track approach to life. Actually more like a half-track approach. This is life with bvFTD for me.

I used to be able to do seventy'leven things at once, and do them all very well. At least I thought I could, and it seemed to be the case. Now I can only do one thing at a time fairly well sometimes on a good day.

The reason I am addressing this is because it was brought to my attention last evening while watching television, and I want to document the severity of it right now though I really can't see how it could get any worse. Wait! Forget I said that! It can always be worse. It could be raining...

The premier of the TV program "Last Resort" was on, and I was watching it with a friend (who fell asleep on my couch halfway through it!). Near the very end, the lead character, the Captain of the sub whatever his name is, gives a lengthy monologue taped speech broadcast to the world. As he is talking for several minutes while the background images are telling a different story. The images shown while he is talking catch the viewer up on what has happened, and tie up some loose ends. Well, this may be a great creative way to tell a story, but it does not work for me with bvFTD! I really didn't even know about it until I watched it again. One of the advantages of being able to pause and replay live TV.

I watched the whole speech, and listened intently. After all it was his important speech to the world. I thought, subjectively, that I had a full comprehension of what had gone on, and was not aware of how I could possibly have missed anything. That was until my friend woke up and asked, "Why was his wife in a room being shown pictures?"

I said, "What?" I kinda thought she had been dreaming, or was thinking of something she had seen earlier in the show before she fell asleep. She was insistent about what she had seen, and I had no idea what she was talking about. It was like we were watching 2 different shows.

To figure out what was going on, I used the DVR to re-watch the Captain's speech to see what she was talking about. I realized that not a single one of the images had registered the first time I watched it when I was listening to the words of his speech. When I watched the images, I didn't hear the speech! Wow! My mind is really incapable of doing 2 things at once even when I am aware of it, and trying to concentrate on both.

I usually do not notice this symptom in my day-to-day activities. Occasionally a friend will notice that I need to be guided back on-track if I am in the middle of doing something, and get interrupted or distracted. Because of my inability to multi-task I just switch tasks, and continue down a different track until I am reminded of what I was originally doing. I think the reason I don't notice is because I have adapted to it. I structure my time so that I can work on one thing at a time as much as possible, and avoid interruptions.

I also have ADHD-like symptoms, so I now have an unnatural tendency to skip around from one thing and thought to another, but still only one thing at a time. These 2 symptoms together make both of them worse because when I switch tasks or thoughts I tend to stay switched, and not return to what I was doing or thinking for a long time if ever.

I just thought this would be a good time to document this symptom since I noticed such a good example of how it works.

Comments are welcome.