Thursday, January 1, 2009
What Rich Hopes For
In person, he appears nothing like this unflattering picture of him on the internet. Rich is blond and smiles with blue eyes that are kind and sparkle. His face is clean-shaven, smooth and pink, the kind of gentle face my grandmother would’ve unabashedly approached and patted on both cheeks while saying, “Aren’t you handsome?” He looks at least a decade younger than his online picture and even younger than he is. Rich is fifty years old.
I learn that Rich has a masters degree in journalism and was the managing editor at a major newspaper for four years when his first symptoms began. It had been his job to assign stories to writers and photographers and edit stories. He made sure everything came together. He was highly competent and loved his job. He loved the written word.
Suddenly and inexplicably, Rich became tired, the kind of abnormal tired that sleep could not restore.
“My job typically needed me twelve hours a day, six to seven days a week. I’d go to work and last at my desk for ten minutes.”
He was diagnosed with Chronic Fatigue Syndrome. He could no longer work. Everything stopped.
“I know fatigue is a part of Alzheimer’s disease, and I know this disease is very strange and shows up differently for different people. But I still don’t know if the fatigue was due to Alzheimer’s or something else.”
His next symptom didn’t fall under the classic heading of ‘forgetting’ either.
“I started experiencing auditory hallucinations. These are very disturbing. I’d be in another room, and I’d hear the TV on, but I wouldn’t remember turning the TV on. I’d go in the other room, and the TV wasn’t on. I’d think, ‘Why am I hearing the TV?’ So I’d turn the TV on. Now I’d hear the actual TV AND the TV that I was hearing in my head.
Or I’d be listening to the stereo to a CD that I’ve been listening to for thirty years, and I know well what it sounds like. Then this harpsichord music would begin playing over it. And I’d think, ‘Well that shouldn’t be there, that doesn’t have anything to do with this!’ So I’d turn it off, so the CD music wasn’t playing anymore, but the harpsichord music was still there.”
About half of people with Alzheimer’s disease experience auditory and visual hallucinations. But Rich didn’t know this at the time.
“Then I was getting lost. I’ve pretty much lived in Los Angeles for most of my life and, I’ve been driving since I was sixteen years old. I was going to places that I’ve been to a thousand times, and I was just completely getting lost and not knowing how to get back. And again, I know this city like the back of my hand. I know it’s a complicated city, it’s not like living in a small town, but you drive Los Angeles. I went to school at USC. I know this city. And I was getting off the freeway and not knowing where I was. I was getting freaked out. My doctor just kept poo-pooing it and dismissing me. He really just didn’t listen to me.”
His doctor told him he was too old to have schizophrenia. He told him he clearly wasn’t depressed. Rich knew what he didn’t have. But he didn’t have any answers either.
So how did you get to a diagnosis of Alzheimer’s?
“My insurance changed, and I saw a new doctor and told him what had been going on. He said, ‘I don’t like the way this sounds’ and sent me for an MRI, a PET scan, and neuropsychological testing.
So I went and had the MRI and the PET and didn’t know the results. Then I went for the neuropsych testing which was eight hours a day for two days, and it actually spilled over, so it was probably a little more. It was exhausting. This may sound funny, but while I was taking the test, I was blowing it, but I didn’t know it. And she (the woman who administered the test) didn’t give it away. She just kept saying, ‘Good! Great!’ Encouraged by this, I would continue reading passages and answering questions. I thought I was acing the test! I wasn’t aware of this at the time, but she had me read at the twelfth grade level, and I got all the answers wrong. And she just kept moving down—eleventh grade, tenth grade, nineth, eighth, seventh. She stopped when I could finally answer some of the questions right, somewhere at grade school level. I was completely unaware that I wasn’t getting them all right.
At the end of the last day of testing, she had her report and my doctor had the scan results, and we all had the conversation. The MRI was clean, but the PET scan showed atrophy and hypoperfusion in the frontal, temporal, and parietal lobes. And all the mistakes I’d made in the neuropsych tests made sense in terms of where the deficits were on my PET scan. The doctor told me I had Alzheimer’s disease.”
What did hearing those two words do to you?
“I was really devastated. This was never on my radar at all. I was thinking brain tumor. Not that I wanted one, of course, but that’s what I was thinking.”
How did your life change after diagnosis?
“Emotionally, I went to a very dark place. I don’t talk about this too much, but I really did consider suicide. My mind went to where most people’s minds go when they think of Alzheimer’s. I kept thinking of lying in a bed somewhere, and I didn’t want to. So I thought, ‘Why not just cut to the end now?’ For about two months, I was in really bad despair. Then I talked with Michelle (the Director of Programs at the Los Angeles Chapter of the Alzheimer’s Assocation). She spent a couple of hours with me and listened to me and referred me to an early stage support group. That was really the turning point for me, having a place to connect with other people. That very first support group, I met Jay, and we went to lunch. We just have this connection, that kind of bond with someone where you’re able to talk openly about what you’re going through.”
Through his support group in Los Angeles, through online support groups, and through the Early Stage Advisory Panel for the National Alzheimer’s Association, Rich has forged many new and intimate relationships with others who have young onset Alzheimer’s. Finding others navigating similar waters gave Rich what he needed—real life examples of people living with Alzheimer’s. Not lying in a bed somewhere.
How did your existing relationships change after diagnosis?
“The person who has known me the longest has had a really hard time with this. She kept saying, ‘You don’t have this. Don’t say it. They’re wrong.’ Whatever process I had to go through to accept my diagnosis, get beyond my own denial, and deal with it, it was painful. But I went through it, and I accept my diagnosis. I want to tell people like her, ‘Don’t make me try to convince you for fifteen minutes that I have Alzheimer’s!’ But I have to go through that with people. With this one friend of mine, I had to keep going through this with her. She just wouldn’t believe me.
Then, I’ll tell her a story about me forgetting something that could never be mistaken for normal, and she’ll go to the other guardrail. Now she’ll say, “You can’t live at home alone anymore! You can’t be taking care of your mother! You need to sell your house!” Suddenly, I’m completely incompetent. And before that it was all, ‘There’s absolutely nothing wrong with you’ over and over. There’s no gray area. It’s just either or.”
I think this is a hard thing for people who aren’t familiar with Alzheimer’s Disease to understand, that it isn’t zero to end stage. When you were first diagnosed, your thoughts went straight to being in the fetal position in a bed somewhere, right?
"Right. I’ve learned differently."
Tell me what a good day is for you.
“A good day is going to my support group, meeting with friends, staying connected with people. I like reading the New York Times. It makes me feel connected to the world. But when I read the newspaper now, it takes me so long to read it. I’ll read an article and two minutes later have no comprehension of it. So I’ll have to read it again and again and again. It’s really frustrating, especially because of what I used to do for a living. I used to not only read stories but edit them and make them better. So it’s really disconcerting to me. Audiobooks are somewhat easier. I sometimes put things on my iPod and listen to them. I sometimes have better recall aurally. And if I like something, I’ll put it on again. And it’s almost as if I haven’t heard it before. That can be nice because it’s like experiencing something all brand new.”
What did you hope for your future before Alzheimer’s disease?
"My dream was to live in New York and work as a journalist for the New York Times."
What do you hope for now?
Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com