On Monday, we met with Dave's neurologist to go over the results of his MRI. As always, for the initial part of the appointment, Dave completed a mood checklist where he answered yes or no to a list of questions like Do you enjoy your life? Do you enjoy getting up in the morning? Do you cry a lot? He also completed the SAGE, a mini assessment of cognitive abilities. He didn't score badly at all - right on the borderline for mild cognitive impairment. I completed a checklist of behaviors I see in Dave, and whether they never happen, happen occasionally, happen daily but are manageable, or they are a problem. Dave a couple of daily things, but none of them are problems. It seems he is atypical in that considering the onset of this disease for him, his symptoms have not progressed as rapidly as some. He did have some more atrophy, but it was minimal. In this disease, atrophy does not correlate with symptoms. A person with significant atrophy as Dave has may be far more symptomatic, or a person may present with more advanced symptoms than Dave and imaging may show little atrophy. One of the joys of this disease! It is NOT predictable - it is a different adventure for each person. So we continue to just keep on keeping on while we can. It could be 20 years before Dave begins obviously declining, or he could fall off this plateau in a year. Keeps us guessing!
I have been emailing the Penn FTD Center with the University of Pennsylvania to see if Dave could participate in some of their research they have going on, just to feel that we are contributing something to the study of this disease. Dave would first have a clinical appointment with one of the doctors at the Center to be sure participation in the studies is appropriate. One is a biomarker study including a longitudinal FTD study as well as ARTFL, a consortium study that is helping FTD researchers build a public-health level database about FTD to move the science forward. It would involve bloodwork, both DNA and RNA, neurocognitive testing, another MRI apparently research quality, and a lumbar puncture. The lumbar puncture can apparently rule out infections and cancers that mimic FTD. I have no doubts about his diagnosis, but it will all be very interesting! I'm hoping we may also find out if there is any indication Dave has genetic mutations that indicate it could be inherited.
The neurological assessment and lumbar puncture would be billed to insurance as part of the clinical evaluation. So I have to find out if insurance will cover it before committing. I hope it does, because I think it will be interesting and informative, and I'll feel some satisfaction at contributing in some way.
I'm currently planning to go to the Caregive Conference the Penn FTD Center is having in Philadelphia on May 20. It's free - just have to find a place to stay Thursday night before the conference - I'm looking forward to that - to learning more about this disease, and to meet others going through some of the same things.
Dave overall seems well - it just boggles my mind that he can have so many medical issues all at one time - he has FTD, and in the last eight months had 4th nerve palsy with no identified cause; retinal hemorrhaging with no know cause; his Raynaud's Syndrome - an autoimmune disorder where his fingers turn PURPLE and are cold to the touch - has been very evident; and in the last month he has psoriasis - another autoimmune disorder that we discovered on his shin when he was changing out of his gown for the MRI - it looked awful! Took him to the doctor - they at first weren't certain of what it was - but ending up diagnosing psoriasis. Very patchy itchy skin. It has since showed up further up his leg, on his back in three separate patches, on his stomach, and some on his arm. UGH! How can he stand it? A prescription cream was $104, so we have been using an over the counter cortisone cream that seems to be working fine with the itching. But it is crazy! We still have upcoming appointments with the neurosurgeon in the next two weeks, and with the retinal specialist in a month or so. Then I think we're done for awhile!
The weather is beautiful today - sunny - up to 74 degrees - I think it's going to be 80 tomorrow! This kind of weather makes it easier to remember that life is good and I should count my blessings. All in all, a great day. Looking forward to tomorrow! I like this feeling!
