I had a very distressing telephone discussion with my cousin the other day.
She had left a message indicating that she had a few questions for me but apparently didn't have the correct e-mail address for me. Would I send her the correct address, or call her please?
I did both.
Her younger sister (obviously also my cousin), has recently been diagnosed with early onset Alzheimer's. Only 56 years old, C has been given 60 months ("that's how they talk to you about this") of cognitive life and about eight years of life.
The doctor has asked if there was anyone in the family with the disease.
They had established that there was no evidence of the illness on their mother's side. Now they were investigating their father's side.
Our fathers were brothers. Hence, the call. She figured that since I have done so much family tree research, I might know the answer to this difficult question.
We discussed the fact that none of the relatives on our fathers' side had lived long enough to have developed Alzheimer's. With the exception of one paternal aunt (who lived to a ripe old age and clearly did not suffer the affliction), all our paternal line had died in their 60s of other causes.
As to our paternal grandfather's line, he came to Canada as a British Home Child, and that is where a lot of my research has been focused. Consequently, I have "cause of death" for his line back to the early mid-1800s.
In 1841, our 4th great grandfather died aged 66 years as a result of "decay of nature." Might that be what they called AD back then?
In 1888, our 2nd great granduncle died aged 63 of "atrophy of the brain." I'm fairly certain that could be a description for AD.
But that’s really reaching with no other evidence of AD between then and now, isn't it?
The rest of our paternal grandfather's line all died in their 60s or earlier so we have no way of knowing if they might have developed AD, had they lived long enough.
I've checked with a few relatives on our paternal grandmother's line to see if they can offer any information. (My records indicate that most of her line also all died in their 60s, of other causes.) To our collective knowledge, there is no previous incidence of this particular illness in our line.
Heart disease? yes
Lung disorders? yes
But Alzheimer's? We've simply not heard of it in our family.
The doctor is most interested to determine if my cousin is the first in the family to be affected by this most horrid of diagnoses. Because if she is, the question then becomes, "Why did she get it?"
I asked my cousin a few questions about how the diagnosis came to be made.
Turns out that C has not been able to work for the past couple of years. About two years ago, she started noticing that she could no longer do her job. She would see a word and not know what it meant. She took her concerns to her doctor.
He referred her to a neurologist. That referral took several months.
The neurologist assessed her and referred her to the Alzheimer's program. That referral took two years.
She is currently in a clinical trial and is doing well. But the doctor's comment, when he finally made the diagnosis and gave the prognosis, was, "If only I had got you sooner."
If only. Indeed.