Sunday, August 20, 2017

Trying To Do Some Good

Grrr... I did it again. I had this post almost completed then somehow deleted it. I wish my FTD would allow me to figure out how I keep doing this! Oh well, I will go with the belief that by having to redo it, I will find even more inspiration.

At the risk of sounding like I am tooting my own horn, I am going to talk about a wonderful event that happened two days ago. Our local newspaper, the Altoona Mirror and a large medical practice sponsored their annual Health O Rama at the local mall. In addition to speakers throughout the day and free testing that was being done, there were close to 50 table displays by medical related organizations, including a few non-profits. When I first contacted the newspaper about setting up a display for the AFTD, we were welcomed with open arms.

We had a lot of information and handouts for the attendees and I had my sister, also a volunteer for AFTD, to help. The newspaper estimated that approximately 1000 people visited the event. We had a significant percentage of those stop by our table for more information. It was a very rewarding experience for both of us and we already have signed up to display at an event next month at a different location.

When I was preparing for the event, I kept saying that if we reached just one person who needed to know about FTD, it would be worth every bit of the effort. We had several people who were extremely interested and they were planning to either contact the AFTD helpline or go to their website for more information. The biggest reward came in the last ten minutes of the event. A woman came running up, literally running and out of breath. She was staffing a different display at the other end of the mall and someone, knowing her family was struggling with someone who was displaying "strange symptoms," mentioned our display about a "different" kind of dementia.

The light bulbs just kept going on above her head the longer she talked to us and read the information. She kept thanking us for being there because she was definitely going to insist that the family member be evaluated for FTD. Like most of us with FTD, the family member was not displaying the recognized symptoms of Alzheimer's yet they were convinced there was something wrong. I will not say that I hope they get a diagnosis of FTD, because I would not wish that on anyone. I do hope though that they will pursue in getting a proper diagnosis.

It was not easy for me to do this event, to organize it, set it up and talk to people for four hours. By the fourth hour, I was often having to turn to my sister to finish saying what I was trying to say. When we packed up and got home, I realized that I could not lift my right foot. I had to step with my left and drag my right. It is the same side that the brain does not always communicate with properly, so I wasn't too worried. I slept over twelve hours that night and by the morning it was back to my usual "normal". I am sure there are lot of ways I could have improved the event, but I don't care (and it's not just from my overload of apathy) because I know I made my goal of reaching at least one person.

This experience of worsening symptoms occurring when stressed and/or tired is something I forget to mention much. It does happen and it is always a huge relief when I bounce back once I am rested and de-stressed. This is why those of us with FTD remind each other that when in a stressful situation, to take a break, find a quiet spot and recharge. If we try to push through it, the signs just keep getting worse.

I was determined to display at this event even though I usually avoid the mall at all costs I only shop at stand-alone stores or online. The mall has too many stores, too many colors, too many noises and just too many people. Add in background music and the vibration in the floor that they keep telling me is normal, and it leads to a quick overload. Looking back to before I was diagnosed with FTD, there was a warning sign I missed. I was at the mall with my daughter and my sister. We were on the top floor (the one that vibrates), it was crowded, too much noise and too much stimulation from all the stores. I stopped in my tracks and just kept saying "Get me out of here" over and over. They did and I was fine once I calmed down. It is experiences like this one that make it difficult for those of us with FTD to know exactly when the signs of the disease started. There are situations that occurred 25 years or so ago that, looking back, seem like they could have been precursors to the disease.

I have digressed, as usual, from the point of this blog entry. While doing this display was rewarding beyond belief, there were also some frustrations. They were the same frustrations that I, along with most of the other FTD'ers I know, experience way too often. I had the people who walked up and said that they are dealing with 'it' also. It only took a sentence or two of them complaining about their loved one with dementia to realize that they were dealing with Alzheimer's. It was wasted breath to explain how FTD is different.

One woman in particular came back three times and wanted to talk about Alzheimer's and how to deal with situations, like sundowning. It was obvious to us that the way she said she was handling it was probably worsening it rather than helping. We kept suggesting that she go online and look it up or go to one of the many Alzheimer's sites for help or to even go to the AFTD website. Often times, caregivers just need to vent and have someone listen to them, this is totally understandable. but this woman went beyond that. I will admit that I said a little prayer of thanks that she was not my caregiver! I was so proud of myself that I didn't blow up at her. I kept talking calmly and repeating the suggestion to go to the websites and wishing her well. I also kept explaining that my experience was with FTD, not Alzheimer's, which she either could not or would not grasp. Not bad for someone with FTD dealing with one of our most usual frustrations. At least no one came up and said "Yeah, I do that too!"

I am so happy that I took the AFTD's volunteer training 18 or so months ago. I am also happy that they realize that even though I have FTD, I still have abilities and value. I am touched beyond belief that my sister has also become a volunteer. What a sign of sisterly love! There is just something about this disease that makes many of us become determined to educate the world and try to do something to help solve its mysteries. I'm sure they, as well as I am, are determined that if they have to have this horrid disease they are going to make some good come out of it if they can. As long as I can talk or write, I will be trying to spread the word about FTD and the work of the AFTD.

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