Doctors often do not listen to patients who have FTD, and will tell them that they do not have FTD. They know so little about the wide variety of symptoms associated with FTD disorders, and how these symptoms and underlying diseases overlap. This same phenomenon extends to the rest of the medical community: those of us with illnesses, and even our caregivers, are not heard.
There is still much unknown about FTD and related disorders. It is only this year that the leading researchers are starting to agree on which signs to look at and the basic measurements that they need to take, to enable them to start sharing and comparing the knowledge and data that they have each been collecting separately.
Further down the research food chain, doctors grab the more common stereotypes, and apply those typical symptoms as inflexible requirements for a diagnosis. Many people who have FTD do not show “typical symptoms”, and so these doctors refuse to order MRI’s and PET scans, or the neuropsychological testing, that could confirm these presenile neurodegenative diseases in the early stages. I was told by one self-proclaimed expert that if you don’t have emotional blunting, you can’t have FTD, despite physical evidence on an MRI of unilateral frontotemporal atrophy.
There is no cure for FTD and related disorders but neuroprotective medications do help to slow the damage from these diseases. There are certain medications that people with these disorders that should not be on, certain medications that make their symptoms worse.
I understand that doctors are taught to sound confident and authoritative in talking to patients. The idea is that the patient will be comforted to feel that the doctor knows his stuff. The problem is that a doctor’s confidence in his knowledge needs to be based on fact, not fancy. Missing a diagnosis of FTD adds years of uncertainty and unnecessary misery to patients and their families, over and above the depredations of the diseases. And there are few things as disheartening to me as the aggressive ignorance of a doctor confidently and authoritatively asserting falsehoods.
Would it really be so hard just to listen? To preserve some modicum of scientific humility?
Or maybe this humility is the means by which we can distinguish between the truly knowledgeable researchers and the lesser lights.
My words about this disease that is taking my life — robbing me of my grandchildren, and the world of the art that I want to create — come straight from my heart. But there are so few who have the heart to listen.
A long time ago in December, I went to a bar, to listen to the words of a poet who was blind and hard of hearing. He had another poet recite his poems. All of his friends had promised to be there to listen to him. This was a major event in his life. He had never before revealed his poetry, what was in his heart, to anyone.
So the lights were dimmed and a blue light enveloped an attractive woman who sat next to the poet. Her voice was like velvet and his simple poems about love flowed out of her mouth. I was drawn into the poetry, my heart beating with the rhythm of his verse.
Then I felt a cold breeze periodically slip past my shoulders. I looked around the room. People were quietly getting up from their seats, stealing out like thieves into the night, slowing robbing the room of its humanity. Then I remembered that another friend of ours, a poet who read his poetry every week at this time was reading his work just down the street. This section of town was known for the bars where poets read and people listened to live music.
After fifteen minutes, there were only five people there, the audience was the manager of the bar, a new female friend of the poet’s and me. The female poet kept reading his poems and occasionally, she would address “the crowd.” My poet friend continued to grin from ear to ear. I wondered if he had known that anyone had left. Then I thought perhaps he was better off not knowing.
I knew that if I walked down the street, most of the missing audience would be there. I imagined myself chiding them for their transgression. But, I decided, why waste my time in a verbal attack on fools, when a man was sharing his soul with us here.
About ten minutes before the session ended, his “friends” began to file back in as quietly as they had left. Then she of the velvet voice said, “Before I read a final poem, I want to thank all of Bill’s friends for coming here tonight to listen to Bill’s poetry. She rattled off their names one by one and they each squirmed a little in their seats or made some facial gesture, to acknowledged in a social way that they had been caught.
Then the poem was over and they all gathered around him to tell him how his poetry had touched their hearts. I parted quickly not wanting to hear their gushing lies.
Alas for us who suffer these deadly diseases, there is no narrator in this life to name the names of those who will not hear.
I am dying 