I've done a lot of reading this weekend, searching for sites and information about Frontotemporal Degeneration. I read other people's stories about their experience with this disease; I've watched videos of caregivers and of the loved ones with the disease. And everyone's experience is unique, including the "patients" themselves. I've read forums where a person asked a question specifically about FTD, but the answer by the "expert" was all about Alzheimer's. Doctors are not familiar with it - it isn't a "big" disease. It is estimated on some sites that 50,000 to 60,000 people suffer with FTD - some sites say as many as 250,000 if you count the misdiagnosed or the undiagnosed. The only definitive diagnosis comes with an autopsy at the death of the patient.
The stories are all heart-wrenching. Some have suffered so much from the very beginning with more drastic exhibition of symptoms, both physical and behavioral. The message I took from it all is that it is all a game of wait and watch. There are no real predictions of what's to come in what order, of exactly what the progression might be - and no treatment of the disease. If the diagnosis was cancer, it seems we'd be scurrying to get prescriptions or more tests or scheduling biopsies or surgeries or treatments. I feel my only thing to do is to educate myself on the topic, get my head wrapped around what our family needs to do, and spread the word about this disease. I don't do well at "waiting". Ask my daughter! It does give me hope that my husband's situation may be atypical. It seems to me his disease has progressed fairly slowly thus far (and if I'm being naïve, so be it!). Though we have no specific date in time of when it started, it is reasonable to believe it began 13 years ago. Yes, if I pick a date 13 years ago, and today, there is a drastic difference in his personality and behavior. But it is all pretty subtle compared to what it could be. We are lucky he was a gentle, fairly reserved person on a day to day basis. I think that bodes well for us. And in 13 years we haven't seen the physical effects that can be associated with this disease. He walks, he talks, he laughs! And somehow in my mind, I think it will be when the physical symptoms begin to appear that I will begin to worry; that this journey will become more difficult. In the mean time, today is no different then the last week or the last month. Except now I "know". And that, I'm finding, is an amazing gift.
Today was my daughter's birthday dinner. Her boyfriend, my son, my husband and I ate a yummy dinner, and had cake and ice cream. And that experience was very different from a week ago or a month ago. Because we "know" - we know this is the way he is, and somehow having a disease to blame it all on makes things so much more comfortable and easy. We don't feel angry or annoyed with him - just with the disease. We are more patient about showing him what to do to help. Or how something works. We know why he disappears upstairs after dinner. We may be in a honeymoon period with this, I realize. But this is our new reality - and for now, it's a better reality on a day to day basis then it was a week ago. My husband's symptoms are no different, but we have knowledge we didn't have a week ago. My brothers and sisters now know, and their children will know. SO many things will be more comfortable. I won't feel like I need to apologize for his behavior, or be so embarrassed in some situations. I hope my children will feel the same.
Our reality will change, I'm sure, as the disease progresses. But I've decided not to wait or watch for something to happen. When things begin to change, I'll know. I've been empowered by the diagnosis. It has given me some relief from worry. It has allowed me to have a sense of his reality, his inability to change how things are. So I'm going to enjoy our life a little more as it is with my new perspective. Not work so many nights. Take a trip to visit our son in Florida. It feels good.
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