I had already written an entire blog entry. When I finished and read over it, I realized it was all about me and my feelings. I was whining because someone had questioned my motives for what I do and hurt my feelings. My feelings don't matter, it is all about educating people about the disease and its ramifications and, hopefully, helping someone better cope with it. So I erased the whole thing and started over.
While dealing with this disease, I have met a lot of people, in person and online. It is awesome to have gotten to know so many other people who are dealing with FTD, those with the disease, as well as those caring for someone who has it. I have to remind myself that 99% of the people I encounter are totally supportive of one another, including me. It is these friends, most of whom I have met through online support groups, who have become a lifeline for me. After my diagnosis, I was feeling lost and hopeless until I found these groups and met these people. It is through many of their examples that I started to advocate for the disease.
The term "lifeline" is defined as a rope used to rescue someone who has fallen from a ship into the water or used to tie the sailors to the ship during rough seas. I often talk about my lifelines and find the term to be perfect. Without any of them, I would still be floundering around in the rough waters of FTD. I have often talked about having four of them: my daughter, my husband, my therapist and my online support groups. They are all equally important. Without any of them, I would still be wallowing in self pity and anger over being diagnosed with FTD. I think there should be a fifth lifeline, one that I often rely on, yet did not realize how important they are to me.
I am talking about the AFTD, The Association for Frontotemporal Degeneration. I learned about this organization when I first decided to learn about the disease and to not sit around and feel sorry for myself. Through them, I found links to much information about the disease and these links led to even more. It was through their online support group that I was invited to join a couple more. Without them, I would not have the online support from all these friends I rely on for advice, understanding, commiseration and laughter. I would also not have found a lot of the information that I have shared with my family to help them better understand what effect this disease has on me. I'll even be honest, they would not understand why I am sometimes royally difficult to deal with.
This organization puts in a lot of effort toward fundraising and supporting research from those funds. They also have a great system of outreach to help educate everyone about FTD and all the subgroups that make up FTD. One of the ways they do this is by holding an annual conference on FTD to educate professionals. A few years ago, they started including those of us with the disease and our caregivers.
I attended my first conference last year after much encouragement from my support group. This conference was just amazing! To be able to meet the AFTD staff and get to know their organization better was quite helpful. The conference sessions were quite informative and there was much printed information that could be obtained. The best part of the conference was definitely being together with so many people who are also dealing with the disease. We were able to compare notes, swap stories, share coping mechanisms and get to personally meet many members of the support groups. I was able to relax, let my hair down, and have fun. I knew these would be non-judgmental people who would not judge me if I said or did the wrong thing. I had not had so much fun since I had received my diagnosis. That my daughter attended with me made it perfect.
Do I sound excited about the AFTD conference? Oh, yeah! This year's conference is 3 weeks and 4 days away. I won't start counting in days until it reaches the 3-week point. Can you even begin to imagine party time with a whole bunch of FTD'ers? Believe me, it is amazingly fun.
This year, not only are we attending, but my daughter and I are participating in the program. We have been invited to be part of a panel discussion with 3 pairs of FTD'ers and their caregivers. What an honor and opportunity to share! Hopefully it is a day when I can speak well and don't keep stuttering, but I will have my daughter next to me to remind to pause and start over. In addition, these people know about FTD. If I have a problem speaking, they will understand why.
3 weeks, 4 days and counting!!! Look out Baltimore, we're coming!!!
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