If you start chatting with Howard at the local Starbucks where he hangs out six days a week, you might not realize much was wrong with him. Intense periods of working on his laptop punctuated by animated banter with the other coffee shop regulars make the 53-year-old native New Yorker seem like a regular Joe.
Howard tells people that he is a retired businessman who now devotes his time to a medical blog,which is mostly true. He is a former regional director of sales for a successful tech company. And he does have a blog that educates people about a medical condition.
But there’s a lot more to the story, which Howard will eventually reveal once he gets more comfortable with new people: He suffers from the same medical condition he writes about – a rare brain disorder, known as Frontotemporal Degeneration (FTD), which has some overlaps with Alzheimer’s, mainly in the proteins that accumulate. But the neurological changes occurring in FTD are more varied, and the disease can produce a wild array of symptoms and subtypes. Its vague name implies only that certain areas of the frontal and temporal lobes of the brain are deteriorating. Which areas are hit by the disease is anybody’s guess.
Howard has the form of FTD that affects his behavior and personality, for better and for worse: his “filter” is missing, he says, so he’s more honest, more blunt, more off-the-cuff, and makes a few more bawdy jokes than others might. He’s also more intuitive than many. But the disease also pokes holes in his memory, and dampens his ability to reason and his capacity to understand the nuances of others’ inflection and meaning. Mysteriously, some FTD patients develop startling new musical or artistic talents. Others become mute, apathetic, emotionally distant or withdrawn completely. Many stay in bed all day, require full-time caretakers or live in institutions.
Howard is functioning well now, but this wasn’t always the case. His diagnosis took doctors an excruciating six-and-a-half years to arrive at, during which period he was treated for other brain disorders like depression and bipolar disorder (neither of which he ever had). He says he lived in a “medically induced fog” for years and years, thanks to a litany of psychotropic medications, a period that he describes as “absolute hell.”
A Business Brain
At the height of his career Howard was traveling the country, making fat paychecks, and sharing $500 bottles of wine with clients. His business success came from his wit and his chutzpa,and he distinguished himself by going into places like sections of the South Bronx, which his fellow salesmen were afraid to visit. A prime example of his business acumen: he managed to convince the New York Department of Education that they should provide him with a teacher’s parking permit so that he wouldn’t have to walk from his car to whatever school he happened to be selling products to. “I knew what needed to be done, and I did it. I was always a highly motivated, relentless SOB. I still am,” chuckles Howard. His perpetual high spirits are a wonder to anyone who is aware of the kinds of challenges he faces.
But for reasons unknown at the time, Howard eventually started having performance problems at work, which began with disturbing memory lapses: once, for example, a colleague whom he called to ask a quick question said, “Howard, you just called me about this five minutes ago.” His behavior became “disinhibited,” a classic symptom of FTD, and he started saying things that put other people off. He reports being bewildered when he noticed people distancing themselves for him and was shocked when a good friend of his told him not to call him anymore. “The weird thing is I had no idea what was happening,” he says.Traveling home from work also started to be a problem for Howard: he would often get disoriented, sometimes making it as far as his own block. He would suddenly stop, unable to remember how to go the rest of the way.
The Brain Business
Howard’s doctors were unsure of the cause of his symptoms, but treated him first for depression (he had just gotten divorced when this started), then for anxiety and eventually for bipolar disorder. He was given a host of medications during the six-plus year period of wrong diagnoses: Antidepressants, anxiolytics and antipsychotics. “I was drugged up out of my mind, on 17 pills a day,” he says. “I was so doped up, I’d just sit there and stare at walls. Literally. I was walking around almost drooling.” Needless to say, he had to take a medical leave from his job.
In 2006, when his symptoms were not responding to medications and his overall state was deteriorating, his doctors, having decided that bipolar disorder was root of his symptoms, opted to treat him with electroconvulsive shock therapy (ECT) as a last resort. The doses got so high that his doctor told him “we’re in uncharted territory here.” When this didn’t work,his psychiatrist enrolled him in an experimental study, in which he got a vagus nerve stimulator (VNS) implanted in his chest. Each new treatment would give Howard and his friends and family a boost of hope, but each ultimately gave way to greater despair.
Howard’s insurance company cut off his disability when he was diagnosed with bipolar disorder, and he went through his savings. Glick says these days were the worst of his life.
Though the original brain scan in 2006 showed the brain matter in Howard’s temporal lobes to be slightly decreased, it was still within normal limits. The report says it found nothing suggestive of dementias, including Alzheimer’s, Lewy body disease – and, amazingly, FTD. Howard isn’t upset about that the doctors didn’t see it then; he says their only error was not repeating the tests sooner, with newer, more sophisticated scanning methods. He gives an analogy to describe the mistake as he sees it: “If a normal temperature is 98.6, fever is 100.4, and my son has a temperature of 99.8, I would say to him, ‘let’s check again tomorrow, son, and see how you’re doing then.’ They didn’t do that for me."
In 2010, Howard was finally diagnosed with FTD, after a PET scan revealed an obvious loss of mass in areas of the frontal and temporal lobes. He was then “titrated” off the many meds he was on, and set free from the hospital.
Though finally having a diagnosis that made sense came as something of a relief to Howard, being told he had FTD was no party. Looking back on it, Howard jokes that he said to the doctor, “Fronto-tempura dementia? Does that come with a side of wasabi and ginger?”
In reality, the diagnosis and following weeks were not easy. “You leave the hospital thinking ‘I have dementia and I’m going to die.’ You read the medical websites on the disease, and think you’re a goner.” He adds that, “Now, after a year of being off meds (except for Nemenda for memory), I have a different attitude. Half of it’s mindset. I’m not dying now. Maybe some day, but not now.”
Howard now spends his days at Starbucks, writing about FTD in his blog, and filming a documentary for the Association of Frontotemporal Degeneration (AFTD). His mission now is to educate the public and caregivers about his disease—and it is a mission he embraces with an enthusiasm that is an inspiration to his fellow Starbucks regulars, who always find him sitting at his favorite table, which he manages to secure for himself most mornings at 6 a.m., since one of the symptoms of his FTD is chronic insomnia. Also, Howard will pull out all stops if he encounters a fellow dementia sufferer in need: recently, for example, he enlisted the support of his friends and the social worker at his weekly support group to secure a home health aide and a number of goods and services—including a Persian rug—for a friend of a friend.
In his blog and to the camera, he describes his experience with FTD. He details what it feels like to wander through stores unable to determine what came there for, his frustration at not being able to tell whether the person he’s talking to is being serious or sarcastic, and the fear he lives with that he won’t get his disability back, since food stamps and social security don’t quite cover living expenses.
Because he can only sleep a few hours each night, Howard often spends 16 hours a day emailing caregivers and patients from all corners of the globe. His correspondents often thank him for articulating what they see their spouses going through, their parents, or, more rarely, what they themselves have experienced.
Howard is in a relatively good place now, and learning how to enjoy life again. He gave up having a home health aid after a string of unfortunate experiences, and is still thrilled to be off meds and back in the game, after so many years living in a “bad dream.” He and his lawyer are hopeful that his case is a strong one, and that eventually his insurance company will resume his disability payments.
Howard’s childhood friend Marc describes the changes he’s seen in him over the years. “Howard was a brilliant business mind. He saw the corporate chessboard and could figure out how to move the pieces. Now, that surface layer of bullshit is missing, and all you get is Howard at his core. He gets annoyed when he sees others wasting time, frittering away energies on what he sees as useless. It’s really a pleasure to see the level of self respect and purpose that he has, and the difference he’s actually making – it’s unexpected and lovely.”
Howard says that the only difference between him and any other FTD patient is that he’s verbalizing his experience, and trying to enjoy what life has given him. “Just because you have an illness doesn’t mean to you have lie down and die,” he says.“You know, I’m not going anywhere. FTD can hang out, but it’s not going to ruin me. Dementia isn’t the end of life, it’s just the beginning of another type of life.”
Special thanks to the Association for Frontotemporal Dementia, Howard and Marc Turkel.