Anxiety, anxiety, anxiety! It is often one of the symptoms that develop prior to even realizing there is a neurological issue. I remember talking to my doctor about it before we addressed the more obvious signs of FTD. She prescribed a low dose of Ativan to be taken as needed after I made it clear I didn't want to be on anything on a regular basis.
After learning the benzodiazepine anti-anxiety drugs are not a good choice for treating FTD, I was glad I insisted on PRN. The largest risk with these drugs is increased confusion which leads to increased risk of falls. While I still take Ativan on a limited basis when I am out of control, it isn't often. There are other alternatives. Buspar/buspirone is one that is successful in treating many FTD friends on a long term basis. So if anxiety is an issue on a long-term basis, I would suggest you consult your doctor.
Personally, after my husband succumbed to Alzheimer's, my anxiety level decreased significantly. So much so that I did not recognize that I was still experiencing quite a bit. Moving obviously increased it and now, living with my daughter in her one bedroom apartment until our house is finished being built, it is rearing its ugly head once again. Honestly, with her working from home due to the pandemic has not helped.
I am so comfortable here with her that I did not realize how much anxiety I was still having... until I went off on her because we haven't yet begun to choose which of her things we would want in our new house and what should be tossed, sold or donated. After all, we only have 2 months until the move. She was smarter than I was and simply moved into a different room. It wasn't until the next day that I recognized I am still having anxiety related to this move, not stopping to think that it truly is two separate moves for me. When I went in to her room to apologize she laughed and asked "Where exactly is your Ativan?"
The other realization I came to this week was just how much my memory is failing. I had noticed this for a while now, but attributed it to my anxiety. Within the past couple days, though, it kind of slapped me in the face. I was talking with a friend, who also has FTD, and I was totally surprised when he told me his daughter was having his first grandchild. It wasn't until we had been talking about it for a few minutes when I asked "Did I know this already?" His excitement is what triggered me to ask that question. We decided that, yes, we had already had this discussion. It hurts that I would forget something so important in the life of an important friend.
My daughter is now the keeper of my calendar and all my passwords for online accounts. She also stays calm when I lose important things and is patient while I search and search. Eventually, when I give up, she finds whatever it was.
This all saddens me. Not so much because of what is happening to me, but realizing that many of us who became aware of our FTD right around the same time are experiencing similar increases or worsening of symptoms.
It hit me quite hard earlier this week when I was told that the AFTD would probably not be holding a live education conference again in the Spring of 2021. I am not sure they realize just how important this event is to so many of us. To get together, in person, with so many others who are dealing with their own FTD. I have no clue how to explain how important this experience can be to those of us with the disease. Just to be able to hug each other and know we are not alone is simply priceless.
Combine that news with the realization that I don't know how many years we will able to attend was devastating. Right now, there is still so much we can all learn from each other. It truly saddens me to think that we will be losing that forum for another year, not knowing how many years I have left.
I do understand the logistics of planning such a conference require months and months of planning and arranging, so I don't fault them, I just wish it could be different.
I am so comfortable here with her that I did not realize how much anxiety I was still having... until I went off on her because we haven't yet begun to choose which of her things we would want in our new house and what should be tossed, sold or donated. After all, we only have 2 months until the move. She was smarter than I was and simply moved into a different room. It wasn't until the next day that I recognized I am still having anxiety related to this move, not stopping to think that it truly is two separate moves for me. When I went in to her room to apologize she laughed and asked "Where exactly is your Ativan?"
The other realization I came to this week was just how much my memory is failing. I had noticed this for a while now, but attributed it to my anxiety. Within the past couple days, though, it kind of slapped me in the face. I was talking with a friend, who also has FTD, and I was totally surprised when he told me his daughter was having his first grandchild. It wasn't until we had been talking about it for a few minutes when I asked "Did I know this already?" His excitement is what triggered me to ask that question. We decided that, yes, we had already had this discussion. It hurts that I would forget something so important in the life of an important friend.
My daughter is now the keeper of my calendar and all my passwords for online accounts. She also stays calm when I lose important things and is patient while I search and search. Eventually, when I give up, she finds whatever it was.
This all saddens me. Not so much because of what is happening to me, but realizing that many of us who became aware of our FTD right around the same time are experiencing similar increases or worsening of symptoms.
It hit me quite hard earlier this week when I was told that the AFTD would probably not be holding a live education conference again in the Spring of 2021. I am not sure they realize just how important this event is to so many of us. To get together, in person, with so many others who are dealing with their own FTD. I have no clue how to explain how important this experience can be to those of us with the disease. Just to be able to hug each other and know we are not alone is simply priceless.
Combine that news with the realization that I don't know how many years we will able to attend was devastating. Right now, there is still so much we can all learn from each other. It truly saddens me to think that we will be losing that forum for another year, not knowing how many years I have left.
I do understand the logistics of planning such a conference require months and months of planning and arranging, so I don't fault them, I just wish it could be different.
6 comments:
Love you Cindy@
Awe Cindy, I am so sorry. I too hate the thought of not being able to see, hug, and laugh with my fellow FTD'ers in 2021. I missed everyone in 2019 in Los Angeles and then 2020, so I am really sad if we don't have one in 2021, but I do understand that finding a place this close in time can be a real challenge. I think I will email a few people at the AFTD to express how important the AFTD conference is to all of us. If it's logistics, it might not help, but I can at least try. And, yes, we are all declining some. Hopefully, we will have a few more good years to be able to attend. I love you and I'm here for you. 💜
I am glad to see your post. I’ve missed the last few, somehow, and was getting worried.
Happy you are with your daughter and she can help you as much as she does.
I wear an Alph-Stim and that helps me with anxiety. When I go to school meetings and am dealing with "stupide" I up the Alph-Stim level so that my impulse to hit a school psychologist who decided to sit next to me on my right within reach of my back hand that I sat on, I don't hit. To understand what I was dealing with below is a transcript of a due process hearing.
November 19, 2014 Highlands County School Board Florida Phil Walter, school psychologist page 428 lines 21-24: "Q. Okay. Is -- can a child be diagnosed by a medical doctor and a licensed psychologist as autistic spectrum disorder and not have autism in school? A. Yes." page 428 lines 7-13: "Q. Dr. Crum has identified CHILD as having autistic spectrum and the other doctor, Dr. Desponde has also identified CHILD as autism spectrum disorder. Does the school district recognize with these two documents that CHILD is diagnosed with autistic spectrum? A. I don't know what the school district -- I can only say that --" page 428 lines 16-20: " Q. You're there, you're the school psychologist and the head school psychologist. Having these two documents, do you now recognize that CHILD has autism spectrum disorder? A. I recognize that we have to consider these." page 424 lines 19-21: "Q. All right. And a medical doctor's diagnosis you only consider; correct? A. Correct." page 423 lines 14-17: "Q. Okay. Looking back at Parent's Exhibit 8, would you question a medical doctor's diagnoses and report? A. I might." page 429 lines 11-17: "Q. A licensed Florida psychologist can say CHILD has autism spectrum and the school district says CHILD doesn't have autism; is that correct? MR. LOBOZZO: Objection. Redundant. THE COURT: The objection is overruled. You can answer the question if you can. A. We might disagree." page 422-423 lines 23-25,1: "Q. Looking at Parent's Exhibit 11, is this a typical kind of report that the school district would receive from a parent who has had an outside evaluation? A. Just glancing at it, I would say yes. page 423 lines 2-5: "Q. And is there any reason as the school psychologist that you would reject or disregard this document? A. We have to consider the document." page 423 lines 6-10: "Q. Okay. You have to consider it. What does to consider mean? A. Take it under advisement that -- make a determination of whether we would like to do our own evaluations or accept the report." page 423 lines 11-13: "Q. Okay. And would you question that doctor's diagnosis because you haven't spoken to that doctor? A. I might." page 423 lines 14-17: "Q. Okay. Looking back at Parent's Exhibit 8, would you question a medical doctor's diagnoses and report? A. I might." page 423-424 lines 24-25,1-2: "Q. Okay. A licensed clinical psychologist. Is that, to your knowledge, in their scope of practice that they can do diagnoses? A. Yes." page 424 lines 3-4: "Q. Okay. And can you question their diagnoses? A. I might." (NOTE: this is the jerk who decides to sit next to me on my right and I am the one Medicare refuses therapy because I have FTD)
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