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Snapshots of Dementia: Desperately Seeking Diagnosis

Snapshots of Dementia: Desperately Seeking Diagnosis

Photo by Raman Oza from Pixabay In a previous episode of “As the Journey Toward Diagnosis Turns,” Tom’s most recent neurologist (No. 3, in case you’re counting) had requested two things to help her solidify Tom’s diagnosis: a PET scan of his brain and the records from the neuropsychologist. Insurance denied the PET scan, but the doctor wanted us to come in anyway. I fought the early-morning Orlando traffic only to discover that the neuropsychologist hadn’t accepted this most recent neurologist’s form, so he hadn’t sent the records. Instead, we had to fill out an additional request. As soon as we completed and signed it, our neurologist’s office faxed it back, believing Tom’s records would arrive soon. We waited. And waited. And ended up having to reschedule because the records still hadn’t arrived. In fact, the neuropsychologist’s office had stopped answering the phone when our neurologist’s office called. Throughout this season of my life, I have had some amazing and supportive medical personnel who have assisted us. But I have also experienced the frustration of dealing with a system that somehow works against rather than for the patient. Why should our health records not be our health records? Why should we have such a difficult time obtaining them to share with another health professional? Fast forward to a few weeks later, another denial of the PET scan by our insurance and another visit to the neurologist. This time, she had the results of the neuropsychological exam. I wasn’t convinced they would help her much, since that practitioner had told us Tom’s only issues were ADHD and shame associated with some of his poor choices. But of course, we were glad to have another appointment. This time, they did another preliminary memory test, and Tom again charmed the nurse’s assistant. I couldn’t tell if he remembered our previous visit or not, but after a brief physical exam and a few more questions, the neurologist explained her dilemma. After reviewing his records, she felt even more confident that he had frontotemporal degeneration, behavioral variant (and by now, I’d done enough reading to agree with her). But she hesitated to make a firm diagnosis without “proof” via a PET scan (I’ve since learned from other FTD spouses as well as medical reports that PET scans do not always provide such proof.) Since our insurance wouldn’t pay for it, we could either wait until Tom turned 65 and get it via Medicare (at that time, nearly two years away), pay for it ourselves (at approximately $5,000) or remain undiagnosed. It may not surprise you that, with my newfound advocacy for my husband, I chose the fourth door: Another neurologist. By this time, I...

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Snapshots of Dementia: The Day the Music Died

Snapshots of Dementia: The Day the Music Died

Tom playing his first trumpet gig, c. 1969 We refuse to let this thief steal our faith, our marriage or our family, but he has already taken Tom’s ability to work, drive and play his trumpet. The above words come from my November 2019 Facebook post, the first time I shared publicly about Tom’s struggles with early-onset dementia. If you’ve read my recent blog posts, you understand why I referred to dementia as a thief. But how could it steal his trumpet playing? Isn’t that something he could do in his sleep? One would think so. Trumpet playing has been such a part of Tom’s identity that most longtime friends don’t think of him apart from his trumpet. He began playing in third grade at age 9. By sixth grade, he played his first nightclub job. And by junior high, he was one of three students marching with the high school band. Tom still has a T-shirt imprinted with “Band Nerd,” and no description seems more accurate. All-city, all-state; you name it, and he did it. The kid who used to listen to Herb Alpert albums a few notes at a time, write down what he heard and then play the songs didn’t even realize he had perfect pitch until a college professor identified it. But his favorite expressions of music always involved worship. Years ago, I remember a dear woman of God saying Tom had a special anointing when he played for worship that was far greater than his natural ability. I fully believe this statement. Over and over, I saw his playing touch people’s hearts in powerful ways. Tom playing his trumpet on a mission trip to Mexico, c. 2002 In May 2016, before we ever saw a neurologist, Tom was one of three lead trumpet players for a special recorded concert of the Florida Worship Choir & Orchestra. He had a busy few weeks before the concert and apparently didn’t practice enough. When the evening ended, he knew he had injured his lip. He iced it during the concert and on the way home. “I can’t play,” he said. “I’ll have to let it heal.” And so he did. For weeks. As part of his sixtieth birthday celebration, I gave him a summer trip to a trumpet camp run by one of his longtime trumpet heroes: Malcolm McNab, who played lead trumpet on thousands of movies and television shows. For Tom, this was the gift of a lifetime. But should he go with his injured lip? He called to cancel, but Mr. McNab graciously convinced him to come. And Tom was so thankful he did. Not only did he get to spend time with his college...

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