Better Informed but More Frustrated

 If you have any doubt if I have FTD, let me tell you... I just spent 2 hours trying to get logged in. I have no clue what I was doing wrong. I know I kept having to log into Google and enter password. I was looking at my list of passwords, but it wouldn't work and I ended up having to change passwords about 5 times and resetting my privacy settings. Whatever, I don't remember it all, but I am here. Yes, that sounds excessive and it was. I know it was user error, I just don't know what error triggered it. More about my loss of technology ability later.

Many of you know, but the Association for Frontotemporal Degeneration (www.theAFTD.org) has annual education conferences for all interested in FTD, from those with the disease to medical professional and more. I, and if I may speak for all of us with FTD, look forward to the next one as soon as we return home. It is a wonderful opportunity for those of us with FTD to meet, learn, share information, and have fun. To meet and hug and then spend an entire day with others with FTD is priceless.  We can let our hair down and not worry if we aren't using the right words or stumble across the room. We can be ourselves. Then came COVID!

Last year's conference was cancelled due to travel restrictions, size of gatherings and risks of infection. We were REALLY looking forward to this year's but it met the same fate.

The AFTD responded by planning two days of an online virtual conference. We were given just as much information as we did when it was in person, thanks to many wonderful experts on FTD. It was obvious that everyone with the AFTD must have put in a huge effort and utilized a lot of technical abilities.

There was enough information shared that I had to feel a bit hopeful. Let's be realistic. I know there will not be a cure for me. We all know that even when a cure or treatment is found, it will need to go through years of testing and trials to get government approvals. I heard enough, though, to be hopeful for the next generation. And, that was just the first day!

I am blaming the progression of my FTD for this next part. The second day, Friday, was again loaded with presentations by many experts. The information seemed more geared to everyone, except those with FTD. I will admit that I was exhausted after the first day which took its toll on my brain functions. Fortunately, there was a link on the screen for technical help. I needed help. 

My screen was frozen and I had no clue what to do. I clicked on the link and was answered immediately. They asked what operating system I was on. I had no clue. They said if I could switch to Google, the broadcast would be better. I thought I was on Google but they could tell I was on Microsoft Edge. Kind of scary they could know that and I couldn't. So they suggested I go ahead and download Google. I think my response was an intelligent, "Huh?" Fortunately, there was an alternative to just click on the reload icon. That I could do and it worked. I had to ask for help a couple more times from them and twice from my daughter who just kept saying "Stop crying!" She wasn't being mean or thoughtless, it was that she could not understand what I was saying. 

Lovely, I was left feel stupid and useless. This did not help my mental state at all! To add to my mushy brain function, the information being presented did not seem geared for those with the disease.  A couple presentations were about the care team you should have. I wonder if this was mainly geared to caregivers and family members because it sure didn't help me.

Yes, it makes total sense that you should have a social worker to coordinate things and find things and ways to ease the way. We also were to have a neurologist, a family doctor, any other needed physicians, a caregiver who comes to the home and helps with things like housework, bathing, etc. Someone was to coordinate medical appointments and respite for the family member who whoever provides the constant care. I think I am forgetting a couple, but it doesn't matter.

My thoughts were, "How do I find these people?" "If I do, how the heck am I supposed to pay for them?" "How am I going to keep track of all these people?" "What are the odds I find that many people who have knowledge of FTD?" I don't know, maybe the social worker does that. I also worry about being stolen from. The part time helper I finally got when my husband died and I was still in PA, was robbing me blind. Sob story after sob story, I would help her out with money I couldn't afford. Eventually, she would come over, take out the trash then sit down and watch soap operas, then wait for me to fix dinner. I knew she had helped herself to several things in my home, but it wasn't until I was moving that I realized how much was missing. She even maneuvered me into signing my car over to her. So how do I find a "team" I can trust?

At one time, when still living, alone, in PA, I was offered assistance through the county's Senior Services program. A social worker visited and explained all that she could do for me. The main thing was she would coordinate my care and find help for me so I could stay in my home. BUT, I would have to pay, if I remember correctly, $270 a month for her services. Then I would have to pay the going rate for all the help she found for me which ranged from around $10-25 per hour. Some even higher. I had to try to educate her about FTD on top of it. She had no clue. The worst part was that I never heard from her again, even after paying the first month of her services of $270. This was not a fly by night company, it was the county's answer to the state mandate of a Senior Services organization.  They did provide van service for seniors at a very low price, but I had already set that up for myself.

I understand that if you are eligible for Medicaid in your state, most of these things are provided at no or little cost. I am on Medicare but I receive around $150 a month too much Social Security to receive Medicaid. That whopping amount wouldn't even have paid for the social worker. 

I am okay with that. I manage fine now that I am living in my daughter's home.

However, being told I need to have this "team" broke me. I felt even more stupid, useless and worthless. Why cannot I not find these people? I don't even have a doctor who understands FTD, except for my new gastro enterologist and, fortunately, my retina specialist. . If I could travel to one of the research medical facilities, I could maybe find what I needed. But what good would having these professionals 150 or so miles away with no way of getting there. My daughter's employer is already complaining about the time she has to take off for my local appointments.

To manage this myself would require more searching for and arranging transport, to say the least, than I am capable of. Right now, I am not even sure I could research these things on the internet. I couldn't even switch between sessions for the conference. To be perfectly forthright... today, when logging in to start this blog, it asked for my email address. I panicked for about ten minutes. What is an email address? I tried putting in just about anything. I finally thought I had the answer and got up to get my list of passwords. I tried putting that in which of course didn't help either. I finally figured it out. Part of this is because I am still tired from the two days of conference. If anyone has the answers, I would be glad to hear from you!

I have utilized technology my entire life. My first paid job was operating computer equipment. I loved it and it was definitely my niche! I went on to operate huge computer systems, back in the days when they filled an entire room yet didn't have the power this laptop has. I programmed computers. In later life, I was an expert in an accounting system and was on the company's support list for others to call for help.

Now, I cannot remember what an email address is?

I still want to profusely thank the AFTD for their monumental efforts to put together this virtual conference. The information presented was priceless and very much appreciated. Next year, it hopefully will be an in-person conference so that those of us with FTD can receive the social value as well.