I promise to try to keep this as least a little upbeat.
I have been down in the dumps ever since returning from the conference and the extra few days playing tourist with my daughter. After a week or so, I realized it was due to the fact that I look forward to the conference for several months. Really, really look forward to it. Not only do I learn more about the disease, but I know I will be surrounded by people who all understand it. Adding in the mother/daughter time and it is as close to Nirvana as I seem to be able to reach with FTD.
I think it is pretty much normal to feel down after enjoying that time so much. The same thing happens to me for a week or two after Christmas. Same reasoning applies.
I did not realize just how miserable I was coming across until this morning. I truly believed I was doing a decent job of hiding it. A couple hours ago, I pulled a package of hotdogs out of the freezer. I was determined to have picnic food even though it is cold and rainy. Have to have picnic food for the Memorial Day holiday. Not sure how it relates to honoring all who sacrificed their lives to defend our country, but tradition it has become.
For some reason, the old (very old) jingle for Armour hotdogs popped into my mind and I started singing it. It is pretty scary when you realize all the non-politically correct it would be today. "Hot dogs, Armour hot dogs. What kind of kids eat Armour Hot Dogs? Fat kids, skinny kids, kids who climb on rocks. Tough kids, sissy kids, even kids with chicken post love hot dogs, Armour hot dogs, The dogs kids love to bite!"
See what I mean? No way it would play today! Back to my point, we did not have Armour hot dogs, just two different other brands. My husband and I cannot agree on the best hot dogs, so we have two brands when we have them. Personally, anyone who doesn't love Nathan's hotdogs doesn't have good taste, but I will leave that up to you.
The reason I have gone through this long hotdog story. When the song popped into my head, I had to sing it, with gusto! My husband looked at me like I was crazy. Well, there is that, but let's ignore that. He couldn't remember it and, I suspect, forgot that FTD has not affected my long term memory. After I had retreated back to my computer, he stuck his head in the door and said "It's good to hear you be upbeat, even if it was just for a hotdog jingle."
I thought I had been hiding how down I had been feeling. Virtual slap in the face, girl... you haven't hid it at all!
I have little reminder signs in a few strategic places in the house to remind me to smile and think of good things. I guess I need to start actually seeing the signs again. So, today, when I see the signs, I will think of the lunch out with my friend yesterday and the sinful dessert that I brought home and was able to make into 3 portions to spread out the yummy. It really was 4 portions, but I was extremely generous and let my husband have one. I had the last one as my lunch today. You would have been selfish too if you had tasted this mini caramel cake.
Staying upbeat is going to be difficult this week. After an MRI two weeks ago then an ultrasound yesterday, on Wednesday I must have a biopsy. Then I have to wait an entire week for the results. Mentally, I am not nervous and don't really care. What could be worse than FTD, right? Yet, that tiny little bit of fear keeps sneaking in once in a while.
The good news is, they are doing the procedure at 8 a.m. I don't wake up until noon, even if I am out of bed hours before then. I'm hoping that I will sleep right through it! I know I won't, but a girl can dream!
Now, I ask you all if you remembered the jingle? Guess what? If you did, you are really, really old, right along with me! So, sing along with me: "Hotdogs, Armour hotdogs..."
Saturday, May 27, 2017
Sunday, May 21, 2017
Not So Amusing or Inspiring Today
I normally don't post an entry more than once a week and certainly not two days in a row, but today I must.
After a few days of forcing myself to do too much work, my FTD mind and body are telling me to stop for a while. It did this by awakening me this morning with a really bad FTD headache. After reading as much of the Sunday paper as I could, I retreated to my room and started scrolling through Facebook. Usually, this is a good idea... to catch up with what friends are doing and maybe to laugh at some funny memes. Just doing this can sometimes ease the discomfort.
In hindsight, I now know that today was not the day to do this. The first thing that upset me was the post from one of my fellow graduates from high school. Yesterday, she had posted a tattoo that she had gifted herself to celebrate her 65th birthday. Today, she posted the results of one of those mind-numbing quizzes that told her, along with the rest of the world, that she still acted like she was 26. It then went on inviting me to take the quiz, asking "How old do you really act?" Reality hit me in the face because I know that since FTD hit, I act much older than my 63 years.
There is no reason for her to not post these things. She was proud of them and darned well should be. She is one of the most active new "senior" citizens that I have ever known. She volunteers, travels and is just an all around nice person. The problem was that, feeling as exhausted and unable to do anything today as I do, it hit me hard. Her posts made me feel like I was missing things that I wish I could do. I actually cried and had a little pity party until I realized how silly I was being. Now I am just happy for her, as I should be.
Just when I was feeling better, I came across a meme posted by a friend that read "God will always lead you to be where you need to be. In His time not yours. Just trust and believe." Okay, I believe in God and talk to him everyday. I refuse to believe that God has lead me to have this horrid disease. I refuse to believe that He deliberately steals more of my functioning abilities every day. I refuse to believe that He is deliberately leading me to a slow and painful death that will take months or even years to finally end my life. If it was God's will that I should suffer from this disease, should I believe that he has prevented all the top scientists and doctors from finding treatment or a cure?
Yes, I know I over reacted once again. I totally understand the beautiful words she was sharing, hoping to encourage everyone reading it. Unfortunately, though, I believe that if I am to literally believe these words, I just might start doubting my faith. I kicked myself in the butt again for twisting this beautiful sentiment into something disturbing. I realized, once again, it was the fact that my body was rebelling against me today that had skewed my reasoning.
Then, came the final blow and this one has no justification for it being posted. A friend had shared the post of a comedian. In the video, a woman in what appeared to be a power wheelchair needed to get up a level in a busy place. I am imagining it was an airport or shopping mall. She attempted to ride an escalator, in her wheelchair, to the next level. You can imagine the horror of what happened. She, almost immediately, tipped over. It appeared that she was unable to separate her from the wheelchair and was being hurt as she was being held down against the escalator by the chair. It was reassuring that others came to her aid. But... there was also a video running of a comedian. He just kept repeating that he would not comment on this, making it obvious how badly he would like to make fun of it but he was not going to do it. Wow, what a saint!
I cannot believe he posted this or that so many others have shared his post. Why do people not realize that those in wheelchairs are not necessarily burdened with "just" a physical impediment. I found it necessary to respond to this one. I wrote that I am also forced to use a cane or ride in a wheelchair. This is because my brain is unable to communicate with my legs when and how to move. FTD, right along with the walking issue, steals the ability to process circumstances and make proper decisions to stay safe.
I pray, to the God I still believe in, that I will never find myself in this woman's position. I also pray that if I do, that those witnessing the accident will see it as the dangerous result of a deteriorating brain, and not find it so amusing.
I will end my rant here. I usually like to conclude my blog entries with something amusing or at least light-hearted. Nothing to be found in this one provides me with anything for that today. Some times, the things people find hysterical or uplifting result in just the opposite.
After a few days of forcing myself to do too much work, my FTD mind and body are telling me to stop for a while. It did this by awakening me this morning with a really bad FTD headache. After reading as much of the Sunday paper as I could, I retreated to my room and started scrolling through Facebook. Usually, this is a good idea... to catch up with what friends are doing and maybe to laugh at some funny memes. Just doing this can sometimes ease the discomfort.
In hindsight, I now know that today was not the day to do this. The first thing that upset me was the post from one of my fellow graduates from high school. Yesterday, she had posted a tattoo that she had gifted herself to celebrate her 65th birthday. Today, she posted the results of one of those mind-numbing quizzes that told her, along with the rest of the world, that she still acted like she was 26. It then went on inviting me to take the quiz, asking "How old do you really act?" Reality hit me in the face because I know that since FTD hit, I act much older than my 63 years.
There is no reason for her to not post these things. She was proud of them and darned well should be. She is one of the most active new "senior" citizens that I have ever known. She volunteers, travels and is just an all around nice person. The problem was that, feeling as exhausted and unable to do anything today as I do, it hit me hard. Her posts made me feel like I was missing things that I wish I could do. I actually cried and had a little pity party until I realized how silly I was being. Now I am just happy for her, as I should be.
Just when I was feeling better, I came across a meme posted by a friend that read "God will always lead you to be where you need to be. In His time not yours. Just trust and believe." Okay, I believe in God and talk to him everyday. I refuse to believe that God has lead me to have this horrid disease. I refuse to believe that He deliberately steals more of my functioning abilities every day. I refuse to believe that He is deliberately leading me to a slow and painful death that will take months or even years to finally end my life. If it was God's will that I should suffer from this disease, should I believe that he has prevented all the top scientists and doctors from finding treatment or a cure?
Yes, I know I over reacted once again. I totally understand the beautiful words she was sharing, hoping to encourage everyone reading it. Unfortunately, though, I believe that if I am to literally believe these words, I just might start doubting my faith. I kicked myself in the butt again for twisting this beautiful sentiment into something disturbing. I realized, once again, it was the fact that my body was rebelling against me today that had skewed my reasoning.
Then, came the final blow and this one has no justification for it being posted. A friend had shared the post of a comedian. In the video, a woman in what appeared to be a power wheelchair needed to get up a level in a busy place. I am imagining it was an airport or shopping mall. She attempted to ride an escalator, in her wheelchair, to the next level. You can imagine the horror of what happened. She, almost immediately, tipped over. It appeared that she was unable to separate her from the wheelchair and was being hurt as she was being held down against the escalator by the chair. It was reassuring that others came to her aid. But... there was also a video running of a comedian. He just kept repeating that he would not comment on this, making it obvious how badly he would like to make fun of it but he was not going to do it. Wow, what a saint!
I cannot believe he posted this or that so many others have shared his post. Why do people not realize that those in wheelchairs are not necessarily burdened with "just" a physical impediment. I found it necessary to respond to this one. I wrote that I am also forced to use a cane or ride in a wheelchair. This is because my brain is unable to communicate with my legs when and how to move. FTD, right along with the walking issue, steals the ability to process circumstances and make proper decisions to stay safe.
I pray, to the God I still believe in, that I will never find myself in this woman's position. I also pray that if I do, that those witnessing the accident will see it as the dangerous result of a deteriorating brain, and not find it so amusing.
I will end my rant here. I usually like to conclude my blog entries with something amusing or at least light-hearted. Nothing to be found in this one provides me with anything for that today. Some times, the things people find hysterical or uplifting result in just the opposite.
Saturday, May 20, 2017
Unpredictable Weather, Unpredictable Brain
There is an old joke that if you are in Pennsylvania and you don't like the weather, just wait ten minutes. It is not quite that bad, but our weather can indeed be unpredictable. We had three days of unusual temperatures over 90 degrees this week. We are not used to August weather in May! Now, today, it is down into the 50's with lower humidity.
This week, my days with FTD were just as unpredictable as Pennsylvania weather. The first two days of the heat wave, I did not have any energy or ambition. My head hurt with its usual FTD headache and I wanted to just sit and do what a do a lot of days, accomplishing absolutely nothing. Well, if you consider sitting on the couch looking out at nothing as something, then I do accomplish something. For once, my brain told me that it was stupid to do that because I know that if I was able to get something done, even if it was a small thing, I would feel better. My head would still hurt, but since it wasn't as bad as they sometimes are, I decided I could do it.
The first day, I had my husband take me out to buy some herbs and flowers, along with some potting soil. When we got back, I went out to the deck and planted them all in planters and pleaded to the chipmunk gods that they would not eat them all this year. I hid the basil from them because they seem to eat that the quickest. For three years now, knock on wood, they have not found it growing on the front porch. It didn't take long, an hour and a half including the trip to get everything. That was a good day and the deck was starting to look better. It was a good choice of things to do, it just seemed right on a beautiful "summer" day.
The next day, my friend drug me to a meeting of our church's women's group. It was an interesting program and I got to see a lot of women I had not seen for a while. It also did my heart good that they seemed to be sincerely happy to see me! When she brought me home, I was worn out. Socializing can can be exhausting to someone with FTD, especially in crowded and/or noisy surroundings. I was happy that I had made it through and had a good time.
When I arrived, my husband was just going out to dig up a couple small bushes I wanted gone. I decided to go out and keep him company, but then started cleaning out all the dying daffodil and tulip leaves from the flower beds. I ended up with a barrel full of them, but it was a much easier task than it sounds because they snapped right off. The sun had gone under some clouds and a soft breeze was blowing which made it almost enjoyable. I was back inside in less than an hour.
By taking my own advice and accomplishing something both of those days did bring me out of my funk and, thankfully, my FTD headache was easing a bit, So I decided I could do something again on what was the third day of the heatwave. I usually keep a squeeze bottle of balsamic glaze in my refrigerator. It is simple to make. I just pour in a bunch of (yes, this is an acceptable exact measurement) balsamic vinegar and a bit of sugar or agave syrup into a saucepan and simmer it until it reduces by about a half. I usually test its readiness by putting a drop on the cool countertop to see if it spreads or remains a bead. My FTD brain told me that since I am having to wipe the counter so often, just put that drop into the palm of my hand. What made sense to my FTD brain was downright stupid. Who would put syrup that had been boiling for a couple hours onto their skin?
I survived the burn with just a tiny blister, the syrup was ready and I poured it into a squeeze bottle. FTD brain says, "Give it a shake." Not a good idea at all. The hot syrup softened the plastic enough that some splashed out from under the cap, all over the wall, counter, everything on the counter and my shirt. As soon as I got all that cleaned up, I shoved that bottle right into the frig to stay. Good news is that a bottle usually lasts me six months so I should be safe for a while.
I had a little lunch and still had some energy. I went out onto the deck, armed with cleaning supplies and tackled cleaning the deck furniture. It was going well, I was getting soaked but it felt good since it was so hot. I had quite a few pieces scrubbed and placed where I wanted them, then started to tackle a pair of chairs that were really dirty. The dirt resisted even the soapy scrub brush, so I decided to use some full-strength cleaner. It worked pretty well, but the old FTD brain did not stop to think that I should recap the bottle. I knocked over and spilled half a bottle of Mr. Clean. I should have hosed it off, I know, but I didn't and I quickly slipped and fell. I imagine that it would have looked like slapstick comedy if anyone had seen. I wasn't hurt, probably just had a few new bruises but that seems to be the case everyday.
After that, I decided I had better not try anything else. Plus, doing just these two tasks had me exhausted. Have I mentioned lately how much FTD sucks? I went back into the house, sat down and stared out the window. At least this time, I had clean furniture to look at! I should also thank God for my husband. Come dinnertime, he suggested the leftover, cold tortellini salad from the refrigerator so I was safe from any more burns.
Today, our weather has changed again. The temperature is in the low 50's and the humidity is down from what it was as well.
Just like the weather, FTD can be totally unpredictable. We can go along for months and then it will suddenly take a down turn. I can be speaking very clearly for an entire day, yet the next day not be able to get words out without getting stuck on the first syllable until my brain realizes what is happening and I stop and start over. I can have good mobility for days, then all of a sudden my limbs stop getting the messages from my brain and I will end up standing with one foot up in the air until I focus hard or take my hand and give the leg a push. Some days, I can have a positive frame of mind and get some things done. Other days, it is back to the sofa and staring out the window. Unpredictable indeed!
This week, my days with FTD were just as unpredictable as Pennsylvania weather. The first two days of the heat wave, I did not have any energy or ambition. My head hurt with its usual FTD headache and I wanted to just sit and do what a do a lot of days, accomplishing absolutely nothing. Well, if you consider sitting on the couch looking out at nothing as something, then I do accomplish something. For once, my brain told me that it was stupid to do that because I know that if I was able to get something done, even if it was a small thing, I would feel better. My head would still hurt, but since it wasn't as bad as they sometimes are, I decided I could do it.
The first day, I had my husband take me out to buy some herbs and flowers, along with some potting soil. When we got back, I went out to the deck and planted them all in planters and pleaded to the chipmunk gods that they would not eat them all this year. I hid the basil from them because they seem to eat that the quickest. For three years now, knock on wood, they have not found it growing on the front porch. It didn't take long, an hour and a half including the trip to get everything. That was a good day and the deck was starting to look better. It was a good choice of things to do, it just seemed right on a beautiful "summer" day.
The next day, my friend drug me to a meeting of our church's women's group. It was an interesting program and I got to see a lot of women I had not seen for a while. It also did my heart good that they seemed to be sincerely happy to see me! When she brought me home, I was worn out. Socializing can can be exhausting to someone with FTD, especially in crowded and/or noisy surroundings. I was happy that I had made it through and had a good time.
When I arrived, my husband was just going out to dig up a couple small bushes I wanted gone. I decided to go out and keep him company, but then started cleaning out all the dying daffodil and tulip leaves from the flower beds. I ended up with a barrel full of them, but it was a much easier task than it sounds because they snapped right off. The sun had gone under some clouds and a soft breeze was blowing which made it almost enjoyable. I was back inside in less than an hour.
By taking my own advice and accomplishing something both of those days did bring me out of my funk and, thankfully, my FTD headache was easing a bit, So I decided I could do something again on what was the third day of the heatwave. I usually keep a squeeze bottle of balsamic glaze in my refrigerator. It is simple to make. I just pour in a bunch of (yes, this is an acceptable exact measurement) balsamic vinegar and a bit of sugar or agave syrup into a saucepan and simmer it until it reduces by about a half. I usually test its readiness by putting a drop on the cool countertop to see if it spreads or remains a bead. My FTD brain told me that since I am having to wipe the counter so often, just put that drop into the palm of my hand. What made sense to my FTD brain was downright stupid. Who would put syrup that had been boiling for a couple hours onto their skin?
I survived the burn with just a tiny blister, the syrup was ready and I poured it into a squeeze bottle. FTD brain says, "Give it a shake." Not a good idea at all. The hot syrup softened the plastic enough that some splashed out from under the cap, all over the wall, counter, everything on the counter and my shirt. As soon as I got all that cleaned up, I shoved that bottle right into the frig to stay. Good news is that a bottle usually lasts me six months so I should be safe for a while.
I had a little lunch and still had some energy. I went out onto the deck, armed with cleaning supplies and tackled cleaning the deck furniture. It was going well, I was getting soaked but it felt good since it was so hot. I had quite a few pieces scrubbed and placed where I wanted them, then started to tackle a pair of chairs that were really dirty. The dirt resisted even the soapy scrub brush, so I decided to use some full-strength cleaner. It worked pretty well, but the old FTD brain did not stop to think that I should recap the bottle. I knocked over and spilled half a bottle of Mr. Clean. I should have hosed it off, I know, but I didn't and I quickly slipped and fell. I imagine that it would have looked like slapstick comedy if anyone had seen. I wasn't hurt, probably just had a few new bruises but that seems to be the case everyday.
After that, I decided I had better not try anything else. Plus, doing just these two tasks had me exhausted. Have I mentioned lately how much FTD sucks? I went back into the house, sat down and stared out the window. At least this time, I had clean furniture to look at! I should also thank God for my husband. Come dinnertime, he suggested the leftover, cold tortellini salad from the refrigerator so I was safe from any more burns.
Today, our weather has changed again. The temperature is in the low 50's and the humidity is down from what it was as well.
Just like the weather, FTD can be totally unpredictable. We can go along for months and then it will suddenly take a down turn. I can be speaking very clearly for an entire day, yet the next day not be able to get words out without getting stuck on the first syllable until my brain realizes what is happening and I stop and start over. I can have good mobility for days, then all of a sudden my limbs stop getting the messages from my brain and I will end up standing with one foot up in the air until I focus hard or take my hand and give the leg a push. Some days, I can have a positive frame of mind and get some things done. Other days, it is back to the sofa and staring out the window. Unpredictable indeed!
Saturday, May 13, 2017
Back to Reality
Life can be demoralizing sometimes. When you have been looking forward to something for a long time and it is over in one day, it can leave an empty space inside you. Take Christmas for example. We spend weeks preparing for the holiday. We decorate, we shop, we wrap, we bake and on and on. Then it is over, all those preparations and anticipation, all gone in one day.
It was like that this week. The annual AFTD Education Conference that I have been looking forward to for so long happened this past Friday. We actually started on Thursday night with a casual dinner for those of us with FTD and our caregivers. This night is so much fun. Get a bunch of us together when we don't have to worry about being judged by anyone and we really let our hair down. I started of by falling while trying to get into the door of the pub. That would not have been so bad, but once I got up and tried to navigate the low step again, I fell just like I did the first time! Now, that did become a bit embarrassing as a customer and an employee tried to come to my rescue. We didn't let it stop us. I was at the head of a group of about eight or ten of us. My daughter just grabbed my arm and told me to slow down and focus. We both focused and watched me lift and move my foot and I was in.
It got worse, once I was through the door, I asked, I think three times. how we get to the 2nd floor. Again, I hear, "Mom, we've got it." Duh, stairs or elevator. Go figure! The good part, no one laughed at me. Well, I was laughing at myself and my daughter was trying desperately to hold it in!
This wonderful dinner and chance to visit with so many of our FTD friends started the event off perfectly. The actual conference the next day was extremely well organized and informative. My friend from our online support group gave a wonderful welcoming speech to get things going. There was a lot of good news on things being done to help advance research into FTD and on things to assist those of us with the disease.
My daughter and I were one of three pairs of FTD'ers and their care partner. We rocked it! The session went very smoothly and was extremely well received.
Soon, the conference was over. I had learned a lot and met a lot of new friends. Yes, my daughter and I stayed a couple more days to see the sights and enjoy each other's company. But... the conference was over. This really hit as soon as my flight home was over. Just like my example of Christmas, it was quite a let down. I was back home to the same routine of every day life with FTD. No more being surrounded by people who truly understand what this life is like and by those who know much more about who generously shared their knowledge.
I was back to the people who don't understand or just don't care to understand. A couple days after returning, I went to our local hospital to have an MRI performed. This was for another part of my body, not my brain. I had been "pre-admitted" so all the questions had been asked and answered. Just as I gowned up, a young man steps up to the dressing room and starts asking me all the same questions. Obviously, he has been over the list many, many times. He was asking all the questions rapid-fire. I put my hand up and explained yet again, that I have dementia. I told him he needed to slow down and ask me one question at a time. He then started reading the questions at a very loud volume, but just as quickly. I stopped him again and said "I have dementia, I am not deaf!" He responded in anger and tried to tell me that was his normal way of talking. We eventually got through all the questions and he turned and started talking to one of the other techs... you guessed it, in a voice that was in a very normal tone and volume.
It is getting more and more difficult to put up with people like that. Especially with him being in the medical field, he should be able to understand. When I first asked him to slow down, I was very calm and polite. The second time, not so calm but still polite. If he continued to be the tech to work with me, I can bet that I would not have been so polite anymore. Ah.... life in the real world of living with FTD.
But, there is good news! Next year's conference is a month earlier, in March, in Chicago. I only have eleven months to wait!!! I must take a second here to thank the AFTD for all the work organizing and putting on this conference. I learned a lot and had a really good time!
It was like that this week. The annual AFTD Education Conference that I have been looking forward to for so long happened this past Friday. We actually started on Thursday night with a casual dinner for those of us with FTD and our caregivers. This night is so much fun. Get a bunch of us together when we don't have to worry about being judged by anyone and we really let our hair down. I started of by falling while trying to get into the door of the pub. That would not have been so bad, but once I got up and tried to navigate the low step again, I fell just like I did the first time! Now, that did become a bit embarrassing as a customer and an employee tried to come to my rescue. We didn't let it stop us. I was at the head of a group of about eight or ten of us. My daughter just grabbed my arm and told me to slow down and focus. We both focused and watched me lift and move my foot and I was in.
It got worse, once I was through the door, I asked, I think three times. how we get to the 2nd floor. Again, I hear, "Mom, we've got it." Duh, stairs or elevator. Go figure! The good part, no one laughed at me. Well, I was laughing at myself and my daughter was trying desperately to hold it in!
This wonderful dinner and chance to visit with so many of our FTD friends started the event off perfectly. The actual conference the next day was extremely well organized and informative. My friend from our online support group gave a wonderful welcoming speech to get things going. There was a lot of good news on things being done to help advance research into FTD and on things to assist those of us with the disease.
My daughter and I were one of three pairs of FTD'ers and their care partner. We rocked it! The session went very smoothly and was extremely well received.
Soon, the conference was over. I had learned a lot and met a lot of new friends. Yes, my daughter and I stayed a couple more days to see the sights and enjoy each other's company. But... the conference was over. This really hit as soon as my flight home was over. Just like my example of Christmas, it was quite a let down. I was back home to the same routine of every day life with FTD. No more being surrounded by people who truly understand what this life is like and by those who know much more about who generously shared their knowledge.
I was back to the people who don't understand or just don't care to understand. A couple days after returning, I went to our local hospital to have an MRI performed. This was for another part of my body, not my brain. I had been "pre-admitted" so all the questions had been asked and answered. Just as I gowned up, a young man steps up to the dressing room and starts asking me all the same questions. Obviously, he has been over the list many, many times. He was asking all the questions rapid-fire. I put my hand up and explained yet again, that I have dementia. I told him he needed to slow down and ask me one question at a time. He then started reading the questions at a very loud volume, but just as quickly. I stopped him again and said "I have dementia, I am not deaf!" He responded in anger and tried to tell me that was his normal way of talking. We eventually got through all the questions and he turned and started talking to one of the other techs... you guessed it, in a voice that was in a very normal tone and volume.
It is getting more and more difficult to put up with people like that. Especially with him being in the medical field, he should be able to understand. When I first asked him to slow down, I was very calm and polite. The second time, not so calm but still polite. If he continued to be the tech to work with me, I can bet that I would not have been so polite anymore. Ah.... life in the real world of living with FTD.
But, there is good news! Next year's conference is a month earlier, in March, in Chicago. I only have eleven months to wait!!! I must take a second here to thank the AFTD for all the work organizing and putting on this conference. I learned a lot and had a really good time!
Subscribe to:
Posts (Atom)