Time to Take Care of Myself

How often do we say "Where did the time go?" Well, time slapped me in the face today for a couple reasons. 

First of all was when I realized that here it was Sunday and I had not had a chance to write a blog entry yet this week. No wonder I am feeling totally exhausted to the point I am literally dozing off at my desk, if I have indeed been that busy! To add to that, my husband reminded me to print a calendar page for the month of May for him and I hadn't even realized May was only two days away. 

The other reason is that time is the enemy of FTD. The faster the time goes by, the sooner the symptoms worsen or new ones appear. I have written and talked so often about how valuable my writing is to me and how thankful I am that I can still do it.  All my life I have said that my fingers were directly wired to my brain and that is why I typed so fast, enter data just as fast and was an artist. I didn't have to consciously think about it, the fingers just flew. 

This past week it finally hit me that I have been struggling more and more with my typing. Even though I can usually still think the words, they are not what shows up on the screen. I now must proofread things multiple times. It used to be that I needed to proof everything two or three times. Now it is more like six or seven. I am stubborn though, so I will keep at it until it gets bad enough that when I proofread, I can no longer understand what words I meant to type versus what is there in front of me. I also have been accidentally posting things on the wrong page. I have posted things intended for our private support group on another support group's page and even on my public page. I could have become very embarrassing and uncomfortable.

Along with that, I am finding that when I am reading I will totally misread a word that changes the entire meaning of the sentence or paragraph. After a few seconds, I am saying "Huh? That doesn't make sense..." Then when I reread it a couple times, I realize that I had mistaken a word for another not even close to what it really is. 

I don't think I like time speeding by. I know I don't like time bringing me new and worse symptoms of my FTD. I will never give up though, I will keep plugging through it as long as I am able. If it gets to the point that what I write makes no sense, I hope one of you will let me know!

Back to the first example of time moving too fast. This was a busy week and one filled with way too much trauma and drama. The first thing I want to talk about is toxic friends. I had been avoiding spending time with one of my friends who seemed to just exhaust me any time I was dealing with her... on the phone or in person. Finally, this week I allowed her to make me feel guilty enough that I agreed to go to lunch. This friend insists she totally understands FTD and how it affects me. She also firmly believes she knows what it best for me and what I must do. 

When struggling through a disease, certainly including FTD, that is not what you need. It is nearly impossible for people to understand what it is to live with FTD. Some caregivers can not even understand, though they surely do try. It is total nonsense that even a friend can insist on life changes that I need to make. When we went to lunch this week, I mentioned an article I had sent her on something that could possibly be causing the dizziness symptoms she has been dealing with. I asked her if she saw it and she said, "Yeah, I saw it then promptly forgot about it." I took that to mean that she had seen it but forgot to go back and read it when she had time. Logical interpretation. Unfortunately, it was also wrong. What she meant was that she saw it and was not about to read it because she already knew it was total nonsense. When she told me she had forgotten it, I started giving her a couple bullet points from it when she literally screamed "I DON'T WANT TO TALK ABOUT IT!" The other two ladies with us showed utter horror on their faces. Even a waitress who was passing by later asked me what that was all about.

First of all, it's not like I had been hounding her about this article. It was the first time I mentioned it. Secondly, I was just suggesting she read it and perhaps ask her doctor about it. When you match this up to the major life changes she keeps telling me I need to make, it surely seems like she overreacted.  Many people, family and other friends, have been telling me for a couple years that she is toxic to me. I now believe them. Right before this blow up, she had been insisting that I need to leave my husband (who has Alzheimer's and I am his caregiver) and move three states away to be with my daughter. Worst of all, I could not leave the restaurant since she was the one who had driven me and I had to rely on her to take me home.

At least I understand now what everyone meant about her being a toxic friend. That is the last thing that someone with FTD needs. We need to be surrounded by support, love and positive energy. I am sure I am not the only one to not recognize toxic friends (and family) and the importance for us to avoid spending time or even listening to them.

Yes, it is also family. I think I have posted before how my favorite uncle. whom I was extremely close to, passed away suddenly on February 11. Then, my aunt, his wife and my best friend passed away just a short two months later, on April 9. She had cancer and my uncle was her full-time caregiver and it was too much for him. It is a good illustration of how difficult the life of a caregiver can be.

Yesterday was Harriet's memorial service. We had waited a couple weeks so that everyone who wanted to be there could be. Part of it was even in consideration of me so that I could still attend the AFTD Conference in Chicago. I have to say it was a beautiful service and I got to meet many of her friends whom she had always talked about and they were just as happy to meet me. It warmed my heart as they told me that they feel like they already knew me because she talked about me so often.

That contrasted with a sad part of the day when I witnessed how family members can become vultures and latch onto anything with financial value, everyone else be damned. Three family members, myself included, were invited to go to their house to see if there were items we would like to keep. As I gathered little things of extreme sentimental value, they rushed from room to room collecting the things of monetary value. It truly got ugly when we both wanted one particular item. I offered to compromise but she said she was not interested in compromising. Fortunately, the attorney knew that Harriet had already told them that she wanted me to have it, so I feel certain the attorney/executor will give it to me. It continued to be awkward and I finally decided I needed to get out of the negative atmosphere.  A side lesson was to be sure who was listening to a conversation before you lie about it!

So, I learned that family members can be just as toxic as anyone else, possibly more so because you don't expect it from family. It is possible to survive when dealing with those toxic people. In the case of my friend, I finally learned that I just can't allow her in my life at all anymore. The enjoyment of going out to lunch occasionally is certainly not worth going home with toxic baggage in tow. I also learned that it is necessary to avoid all toxic people, even if they are family.

I was very proud of myself. Funerals are difficult for everyone, but even more so for those of us with FTD. I survived it and I managed to keep the good outweighing the bad by concentrating on my aunt's wonderful friends at the service and by concentrating on sentimental memories at the house, along with getting to know my aunt's sister a bit better. She seems to be a wonderful woman and I will cherish her friendship. It will be a way for the two of us to keep my aunt alive in our hearts.

It is not selfish to put your happiness and well being ahead of others, especially if they are people who are not supportive and loving to you. There are a lot of people out there who are willing to take advantage of someone with a disease, like FTD or any other dementia. People like that actually seem to find enjoyment out of doing so. I was strong this week which proved to me that I can do it. I am not alone, all of us can, and must, look out for ourselves. 

Learning CAN Be Fun

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.

Every Day Complications

Before I do anything, I have a huge suggestion to make.  If you have not yet visited the beautifully redone website for the AFTD, please take the time to do so. It is very easy to navigate and to find a lot of great information.  I congratulate them on the beautiful new design.  www.theaftd.org

Speaking of the AFTD, their 2018 Educational Conference is coming up this week. The other day, a friend who also has FTD was amazed that I had made my travel plans by myself. I would never agree that it was amazing. I did manage to coordinate my flights with my daughter's though. We will meet up at the Pittsburgh airport and fly together to Chicago, so it did take some research and planning. What my friend did not realize was that I had spent three days working on the task. Then, I spent three days with a horrid FTD headache. I call it "brain sprain from my brain drain." Not funny, I know, but it amuses me.

That is how it is with everything. Any task takes much more time than it ever did pre-FTD and it takes longer and longer as the disease takes over.  Yesterday is a perfect example. My day went like this: woke up, drank coffee, read paper and opened mail until it was around noon; then I spent about 30 minutes searching the laundry room for something I could not find (still didn't); stripped the sheets from my bed and, after my husband laundered them for me, I remade the bed; I then spent over 2 hours assembling a gift basket for a raffle for a charity I support.  

That is a long sentence to describe all that I did, but let's face it, pre-FTD, after the relaxing part with the coffee, we are talking about about, at the most, an hour of activity. Truly, the 2 hours putting together the gift basket was ridiculous. I already had everything I needed in one place. It was just a matter of putting all the items into a large basket (actually was a tote bag this time) and putting it into a cellophane bag and sticking a bow on it. Except... the loaded tote bag would not fit into the bag the way it usually does, so I had to do it sideways. Every time I tried, all the items would fall over and look a mess. Finally, after multiple attempts, it dawned on me to tape the items in place. Duh! It ended up looking very nice, but come on! Two hours to throw things in the tote bag and stick it in a cellophane bag is ridiculous.

For one thing, the heck with not letting me run with scissors. I should not be allowed to use the packing tape dispenser. I got that tape stuck to me, including around my hand, to my clothes and to the table. What was worse is when I would forget to secure the end of the tape properly and the tape was stuck to itself. That was a true frustration, trying to find the end again and peeling it off so the full width came off together. 

I was totally exhausted by 4:00. I could do nothing more the rest of the day. I could not even fix anything for dinner (we ordered pizza) and was in bed by 7:00. 

For me, this is one of the more frustrating things about FTD. Not only do I have so much trouble doing things but everything takes soooo long to do it. To make it worse, I still have not learned to accept help from others. I have always needed to do everything myself, no matter how many people offered to help. If I had allowed someone else to put my gift basket together, or allowed someone to provide an extra hand, it probably would not have taken as long. I take that back. It would have taken twice as long because I would have been screaming at them for not doing it the exact way I wanted. 

To top it all off, today I am dealing with another FTD headache. Fortunately it is not as bad as they usually are or I would not be able to even look at the lit up computer screen and certainly not be able to put words together coherently. I have accomplished nothing today and have no incentive to do anything at all except to sit in front of the computer. 

Speaking of which, on the same note as the time it took me to make the travel plans, it is the same for writing this blog. Several people have asked me how in the world I can still do it even though I have FTD. For one thing, I am fortunate that FTD hasn't stolen this ability from me yet. Secondly, the actuality is that I spend at least half a day writing an entry and editing it over and over and over. The next step is to run spell check and grammar check, again, over and over.

BUT, in addition to it being only five days until I leave for the conference, my therapist gets back this week. She took three months off to go somewhere warmer. Her husband retired so I guess this is her compromise to not retire totally herself. I am only seeing her once a month now and she did arrange a substitute should I get into a state where I had to see someone so I figured I would be okay. I did go through a couple traumatic events since she has been gone but I just couldn't bring myself to go to a stranger and go through my whole history again. I should be proud of myself that I made it through without seeing her, but I will be so very happy to be able to talk things over with her. It will make me even more relaxed to head to Chicago. This is why I often recommend that someone who has FTD, or their caregivers, might benefit from seeing a therapist. Mine is a psychologist who specializes in dementia. Perfect!

I did say only five days until I leave, didn't I? I'm not up for it today, but tomorrow I must start packing or at least pulling together everything that I need to take. This is from the person who was always up for a last minute trip anywhere, anytime, at the drop of a hat. So, yes, FTD definitely complicates everything.