They no longer come in and couch their findings from your last trail of tests. They don’t say we have bad news and good news. They come in, stoicly dressed in professional whites, and flip past the latest tests, recommendations of the other physicians on your team and, with a hair flick, dismiss them with a sigh. “No, I do not believe you have Lewy Body rather than Picks.” Check. “But,” I stumble out, “Dr. A said it could account for the poor sleep and bad dreams, even the frightening dreams.” “Whatever,” she responds. “BUT I say a bit louder, those nightmares, hallucinations get so bad I can’t sleep for up to 72 hours.” Again, a flick of her hair, a dismissal over her glasses. “No.”
It really is just to define her belief in my stories, or his testing that offers a treatment. “No. We are not going there.” But insomnia for 3 days & nights? “No, that is not where I am going.”
She flips thru the PET scan, the MRI and tells us nothing. Mumbles, “This is not good. Not good at all!!” and excuses herself from our room. There I am with daughters Beth & Andrea, and she removes herself from us to consult. “Not good, not good at all!,” she reports. WHAT THE HELL IS NOT GOOD??!! I think you not only display symptoms of Parkinson’s but ALS, you know ALS?” We nod, “Lou Gehrig’s Disease”. Yes. Swiftly she begins writing a note to schedule yet again one more series of tests.
“Does that mean I will die with my body and muscles and mind deteriorating?” “I don’t know,” she says, “but it would explain your ongoing weakeing of your limbs, breathing harder.” It may be you will just take on the same odd tremble you have from Parkinson’s … anyway I cannot tell you more until we get the tests.”
The tests will be done in 2 weeks. She cannot see me until the end of January.
A year ago, when she told my family about FTD, she said 3 things: Typically you will have 2-8 years to live; contact a hospice; and while you are still congnizant find a home to move to. It took us 2 months to hear back from her after the tests had been taken. Every day that I woke up I said thank you.
Now, right after my 1 year anniversary, she puts me out 6 months to find out what is happening in my brain. Will I live like Lou Gehrig, in a wheelchair, air tube in my throat?
I make this appeal to all physicians of terminal patients: don’t lose precious time. It may be the best we will ever have waiting for you to vaction, take classes. By the time you get back to us, we may no longer recogonize anyone. My IQ drops periliously each year. My cognitive recognition is only 14% from nothing.
It may not be much, but it is all I have. Would it be better for you, AFTD, and all those who study this disease/dementia to just have us go quietly into that good night, than face us, helpless and without hope?
I am in the autumn of my life. I am resolved I won’t see spring. And you are largely responsible for that attitude.
I hope you find peace in the crushing of hope you leave behind each one of our visits…
Papa, Papa… I just don’t know any more.