It's been a while. Let's see. Continuing with the 4th nerve palsy problem creating double vision. At the follow up in December with the ophthalmologist, it was noted that Dave had retinal hemorrhaging. In October he had it in his left eye; in December it was looking better, but he had new hemorrhaging in the right eye. So we set up an appointment to see a retinal specialist - I didn't know there was such a specialty. This physician noted the hemorrhaging, and set up a follow up in February to make sure there's no swelling that has developed. This is apparently usually brought on by high blood pressure or diabetes. Dave's blood pressure had been all over the place, so it was suggested we check in with our primary care physician and monitor his blood pressure more aggressively. So......we set up an appointment with Dave's regular doctor - who is a young new doctor taking the place of the doctor he'd seen for 30 some years - the doctor who has been on this ride with us since the beginning, who made the referral to a neurologist two years ago, has moved up to administration. The new very young doctor hadn't seen Dave before. His secretary is familiar with all Dave's history, and gave us a little bit longer appointment because there would be a lot to cover. To make a long story short, this new doctor had no sense of what FTD really is, told Dave he seemed just fine to him and that there didn't appear to be anything wrong with him. His blood pressure was fine. If it was a little high one day, just take a second pill that day......seriously? So what about the retinal hemorrhaging? What about the 4th nerve palsy? Shouldn't there be some concern over what is causing that if it's not high blood pressure? I keep being told by all the professionals that it has nothing to do with the FTD, so WHAT IS CAUSING IT? Is it just "old" age? Ugh. I feel I've lost anyone to be overseeing Dave's general health. I'm supposed to make an appointment for his regular checkup - a "welcome to Medicare" checkup. I'm not sure I want to do it with this young doctor unless he takes it upon himself to learn about FTD. I'm thinking I'll call his secretary and be frank with her, and see if he can switch to one of the older more experienced doctors. I want someone who knows what to be looking for - am I asking for too much?
I recently had a woman reach out to me, offering support and telling me to hang in there. Her situation sounds so much like mine - and it was amazing to know there's someone going through so much of the SAME THING I'm going through. We've emailed a couple of times, and I hope to stay in contact. I also hope to go to the AFTD conference in May. I need further education myself on all this.
We've made an appointment with the neurologist. I'm hoping she'll have some suggestions on a primary care physician who is on top of FTD and coordinate and pay attention to all the issues and pull them together. Pie in the sky, I'm afraid.
I've reached out to Penn State's FTD Center to see about including Dave in any studies they may have - maybe something with an annual evaluation. That would be a great way to feel like all this is contributing to something - statistics, progression, symptoms, whatever. So far I haven't heard back. It's hard to believe there isn't something here in the capital city of the state of Ohio, with a large university right here. But I haven't been able to find anything. Maybe our neurologist will be able to answer some of those questions and give us some direction. I'd also kind of like a little more evaluation to get done - maybe another MRI to see if it looks the same as a year ago. I don't know what that will tell me. I'm grasping at straws. I think because I'm afraid of what's to come, of when it might be coming.
I've been thinking lately about my story - our story. I sometimes wonder what my story is - but there is no "my" story - it's our story - for better or worse. Unfortunately like all fairy tales, there's a villain or evil witch - and we won't get a happy ending, no happily ever after. We did have a wonderful beginning to our story - and it's not the end. But I feel like the villain in the story sometimes. I know the only villain is the disease. But I find my patience constantly tested. I see the ugly side of myself sometimes. But each day, I get to try again. That's all I can do. I've been reading some other blogs - one a woman wrote along with her husband - he had FTD, and passed away this month. Sometimes he wrote the blog - and was so articulate about this disease! My husband wouldn't be able to do that. Another blog is a husband writing about his wife - he's been taking care of her for years - she is unable to care for herself at all. He does everything for her - and he appears to have the patience and goodness of a saint. I don't think I'll be that strong when the real test comes. At the same time, it seems physical problems may be easier - that's not quite the word I mean, but another isn't coming to me - to navigate than these everyday annoying behavioral and cognitive issues. They are not really measurable at this point - just evident.
Still no headway on starting a support group here - it is next on my list, and will part of my discussion with our neurologist. Sometimes want to be doing something just for me - but suffer the guilt of already doing too much just for me. Crazy game this is.
More to come.
