Maybe, just maybe, I am becoming a successful advocate for FTD. After my letter to the editor appeared in the paper two weeks ago, I have received three phone calls looking for more information. I spent about an hour each time explaining FTD and giving them sources to contact for more information and sources who could recommend physicians who truly understand FTD.
Today, while in the waiting room to receive my annual mammogram. (Note to self: Do not schedule mammogram during Breast Cancer Awareness Month.. it's the busiest month in the mammo department.) While sitting there, I got into a conversation with a woman whose husband has dementia, diagnosed as Alzheimer's and sounded like it to me. But then, another woman started asking me questions because she has a family member who has been told they can't have dementia because she is too young. She is 40! It could be FTD, it could be early onset Alzheimer's. What is wrong with these doctors? I know we live is a smaller town, but it is getting ridiculous. It makes me happy to be able to help others understand this dastardly disease.
When I was in the exam room talking to the doctor after the mammo, I apologized for getting confused and told her I have FTD. She asked lots of questions about it and said she was definitely going to read up on it. Wow! A doctor who cares. She really did seem interested. Shouldn't all doctors be like that? It definitely would help.
My husband and I visited my daughter for a few days this past weekend. It was awesome!!! We hadn't seen her in many months and I'm sure you can imagine how much I miss her. I know I have blogged about it before. We stayed in the same hotel we have for the past three years or so, and my husband called ahead to reserve the same room we have had the past few times. That helped so much. I did not feel disoriented, even in the middle of the night.
Our daughter and her roommate took me to the Renaissance Fair and I lasted the entire day, 10 a.m. to 5 p.m. They had come up with the idea of renting a wheel chair. God bless that daughter of mine! If you have never been to a Renaissance Fair, they are not on paved surfaces but dirt with rocks and tree roots, but she kept insisting on pushing me. The chair also provided me a comfortable seat for the shows, instead of the wooden benches. Finally, after the final show of the day (and what a show it was!), I decided to walk behind the chair and use is sort of like a walker. This works well with grocery carts at the grocery store, so I thought it might work and it did. That section of the fairgrounds would probably have been too difficult to push me through anyway... lots of rocks, pretty big ones, and tree roots. I think she would have hit one, bringing the chair to a halt and me flying out of it!
Our day at the Fair is one of the best days I have had in at least a couple years. I had been to a few Highland Games, but never to a Renaissance Fair, and days with my daughter are worth more than a bucket of gold anyway!
All was not golden though, the driving trip down and back (9.5 hours down and only 8.5 hours back due to less traffic) were very stressful to me. At one point I wanted to open the car door and get out. Problem was, we were driving 65 mph at the time! Good thing my lack of impulse control isn't quite that bad. Books on tape (actually CD's) help me during long rides like that. If you are doing a lengthy ride with someone with FTD, I suggest trying them. You can buy them, download them or even rent them at all Cracker Barrel restaurants for a very reasonable price and can return them to any Cracker Barrel, doesn't need to be where you rented it.
We had purposely scheduled a couple down days for when we got home, something I would definitely recommend, if at all possible, following a trip. After three days, I am feeling settled again and ready to schedule the next trip to visit her!
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