I met Patty Smith and her husband Jay at the Alzheimer’s Association gala in Washington, DC. Patty was diagnosed with early onset Alzheimer’s at the age of 51, and has devoted her life to raising awareness of her condition. She agreed to deliver a short message to the large audience, including political celebrities like Nancy Pelosi, Chris Matthews (of Hardball) and Newt Gingrich. I was able to spend some 1:1 time with Patty in a quiet press room prior to the event.
What struck me most about Patty was her courage and determination. Although her symptoms were troublesome to her (she had some difficulty concentrating, remembering details of her past, and couldn’t offer robust answers to questions) she was prepared to be vulnerable in a very public way. I was moved by Patty’s bravery, and her willingness to sacrifice personal comfort for public education. Of all the important donors and benefactors at the event, Patty was (in my opinion) the one who sacrificed the most- because she was the one who was willing to expose her frailty to us all. I became quite misty-eyed during this interview, as I witnessed a beautiful and brilliant woman slowly being robbed of her faculties (as was my own grandmother) by a relentless disease. I am honored that Patty took the time to tell me a little bit about what it felt like to be living with Alzheimer’s. My prayers are with her and her family.
Dr. Val: How were you first diagnosed?
Patty: I was working downtown on K Street for BB&T as one of their top consultants (I was 49 years old). But I slowly started missing some things and forgetting to follow through with my work. I remember being devastated when I was written up by my superior for poor performance. I decided to take some time off to figure out what was going on with my brain.
I went to see a neurologist who ordered an MRI. The MRI was normal because it was too early in the disease process to see changes. The neurologist then sent me to a psychiatrist to check me for depression. After several sessions, the psychiatrist sent me back to the neurologist saying “If this woman doesn’t have a neurological problem, I’ll eat my hat.” Then I had a PET scan which showed the Alzheimer’s disease. It took a really long time to get the diagnosis because no one thought of Alzheimer’s as a possibility for someone so young. Also there’s no history of Alzheimer’s in my family and my father is one of 17 kids.
Dr. Val: Did you undergo any genetic testing to find out if you carry a gene for Alzheimer’s?
Patty: Well, the neurologist ordered some tests on my spinal fluid, but unfortunately the person who tried to do the spinal tap missed so many times that we gave up because it was painful. [Patty’s husband adds: In the end the test results don’t make that much of a difference. You either have it or you don’t.]
Dr. Val: What is the most difficult part of being diagnosed with early onset Alzheimer’s?
Patty: The thing that frustrates me the most is that I lose my thoughts for a moment. They come back relatively quickly still. It’s hard to see it affecting my children. They’re 22 and 20. My diagnosis has been difficult for them but they’re taking it pretty well I think.
Dr. Val: If there’s one thing you’d like others to know about early onset Alzheimer’s disease, what would that be?
Patty: I’d like doctors to consider it as a possibility when they’re seeing patients with complaints like mine. It shouldn’t take years to get diagnosed. We have to break the stereotype of Alzheimer’s being exclusively a disease of the elderly. Younger people with Alzheimer’s get diagnosed with “stress” or depression, even though the symptoms are the same whether you’re 85 or 50 years old.
Also, I’d like more research funding for drug development. I’d like the FDA to move a little faster on getting the drugs out as well. I’m willing to volunteer for clinical trials, but I’m afraid that I’ll be placed in the placebo group, and I’d really like to get the drug.
Dr. Val: Are you taking any drugs now?
Dr. Val: Are you bothered by any side effects?
Patty: At the beginning we had to adjust the dosage of the Aricept because I was getting “night terrors.” I’d wake up in the middle of the night and sit bolt upright in bed and scare my husband half to death. Of course I didn’t remember any of it because I was still asleep. We cut the dosage of Aricept in half and the problem resolved.
Dr. Val: What are your plans going forward?
Patty: I’m going to continue helping the Alzheimer’s Association to raise awareness about the disease. Our healthcare system is not equipped to handle all the additional people who will be diagnosed with Alzheimer’s in the near future. We must get the message out so that we can prepare better. I’ll continue on giving speeches across the country for as long as I can do this.