Yesterday was another trip to Vanderbilt Hospital in Nashville. It’s a two hour drive on a good day. It’s two hours to reflect on the limited conversational abilities of my husband. It’s two hours listening to comments about the passing billboards and buildings that have no real relevance to our lives. Yesterday, the trip was three hours due to traffic and rain. We make this journey several times a year as it is our only real hope for physicians that understand my husband’s rare brain disease – FTD. In our mid-sized town, the local neurologist has one other confirmed case of the disease. He is a bright, capable professional but just has very little personal experience with the disease to draw upon. Thus, Vandy is our best alternative.
The two neurologists at Vanderbilt that we’ve seen have FTD patients that number only in the single digits. There are several variations of the disease. So, the number of patients with the behavior variant (bvFTD) like my husband is even smaller. Keep in mind this is a regional research hospital. This disease is rare. Our new neurologist, Dr. Darby, is young and has a real interest in FTD. He is trying to bring FTD clinical trials to Vanderbilt. This is an encouraging development from even a year ago.
Every trip to Nashville is emotionally charged. Yesterday was no different. There is always the shred of hope that there might be a new drug or treatment that has just been discovered to help with the progression of the disease or eliminate the symptoms. Nope. In 18 months, it hasn’t happened. But, the illogical hope remains.
Several weeks ago a research assistant called and asked if my husband and I would be willing to participate in a research study. The study would occur on the same day as our already scheduled appointment. It would involve an in-depth MRI (using a 3 Tesla machine versus a typical 1.5 Tesla one). The images are much more detailed in this more powerful machine. It would give us the opportunity to compare the MRI images from nearly two years ago to look for additional shrinkage in the frontal or temporal lobes. The research study would also include some cognitive tests. Sure. No problem. We’d love to participate. From the beginning, my husband and I have wanted to help in any way to advance the research of this disease.
The MRI was completed in about an hour. It was easy. All the metal and magnetic objects were removed from my husband’s pockets. He laid still in a special chamber for the duration of the test. He participated in the cognitive tests as well. These tests were similar to the ones previously given by a Neuropsychologist while trying to obtain a diagnosis. Some went well. Some did not. Parts of his language faculties have been impacted by the disease. His number and spatial abilities remain strong.
The unanticipated (because I neglected to read the details of the study) and perhaps troubling part of the research study involved me. I was expecting to be interviewed about the disease, diagnosis, progression, etc. I was not anticipating taking the same ethical exercises as my husband. As explained by the research assistants, this study involved evaluating the compromised ethics (morals, judgement) of people afflicted with FTD. It tends to happen later in the disease where patients have been known to get arrested for shoplifting, drunk driving, going in people’s houses without permission, exposing themselves in public, or many other frightening behaviors. The research activities I was asked to participate in were hard for me. Could you smother your own child to save thousands of other people? Would you be willing to give someone else additional electric shocks to earn more money? What about shocks to yourself? Would you be willing to punch a stranger in the face or drink a pint of warm cow’s blood for $10,000? I struggled. Every question made me consider my own morals, my value of money, my ability to hurt other people (or not in most cases). I hated it and expressed my distaste for what I was being asked to consider and respond to.
My husband had about twice as many exercises to complete as me. He finished within a minute of me. How could that be? Didn’t he struggle like me with every question and decision in these exercises? For some background, my husband is considered to still be in the mild stages of the disease. To my knowledge, he has not broken any laws. He does do questionable things that he NEVER would have done before the disease. He asks for free stuff every time he orders at a restaurant (or even in department stores). He visits neighbors too often and without notice.
The research assistants could not share what they were evaluating in the exercises we participated in. I was considered a control subject. Initially, I felt they were looking to see the lack of judgement based on the response of the FTD patients. For example, “Are you willing to punch a stranger in the face for money?” The anticipated answer from a FTD patient would be Yes. But, then, another thought took hold. Patients with FTD have no real understanding of how the disease is impacting them. For example, my husband sees nothing wrong with his behavior most of the time (occasionally there is some clarity). Recently, he failed to understand that trying tickle his friend’s feet was not OK. So, my husband still sees himself as a man of high character and good judgement even though his behaviors do not always align with those sentiments. I asked my husband how he answered the questions about accepting $10,000 for various activities. He said he answered them all (with a few obvious exceptions) that he would not take the $10,000. Hmmm. One of the questions was “Would you accept $10,000 for giving a friend a wedgie – with their permission?” He said no. What? If asked, he would give a stranger a “Wet Willie” for no money at all. I am certain of it. Just the day before he was purposely throwing cold water on the teenage lifeguards at the pool. But, on this day he said he wouldn’t take $10,000 for a wedgie. Strange. On the question about smothering your own child to save thousands of people (and many other similar troubling questions), his answer was consistently “do nothing.” What? My husband gets excited if he overhears someone parenting their children. He wants to jump in and do something to help even when it is socially inappropriate. If he thinks someone is hurt on the soccer field, he is out of his seat yelling that there is someone hurt on the field and to stop the game. Yet, his response to all the questions was “do nothing” in a crisis. Odd.
Suddenly, the speed at which he completed all the tests made sense. He didn’t struggle with every question. So, perhaps the research assistants were actually evaluating the FTD patient’s lack of consideration and struggle with decisions. Decisions in FTD patients are impulsive. They do not have the capacity to weigh options and consequences. Whereas, me the control subject, wanted a shot of vodka after the first test. It completely stressed me out trying to decide what was the best decision with the least harmful outcome.
And then my thoughts moved to considering how dealing with this disease translates to our daily life. It is me with all the worry and weighing of options. It is me trying to keep my husband from crossing the ethical line. He’s lost his judgement and will continue to do so. He will never have it again. Yet, he thinks he is fine, great actually. And so, this simple agreement to participate in this research project has put me into a tailspin. It’s kicked me in the gut. It’s made me face what is to come despite my best efforts to pretend it won’t.
After concluding several hours of the research study, it was on to meet the new neurologist. It suddenly felt once again like we were mice in a cage in the laboratory. The new neurologist was compassionate and interested. But, this disease makes my husband a scientific curiosity. He asks, “What is happening in terms of the disease?” We explain. The doctor takes notes. My husband always wants to paint a rosy picture of how much better he is doing. He says how great things are going because he is eating blueberries and nuts. Meanwhile, I slink in my seat. When I try to interject with symptoms he is experiencing, my husband explains away everything I say. I can see the hurt on his face when I mention how he doesn’t want to do chores any more or how he laughs at the kids when they are injured. He so desperately wants to be OK. He is so fearful that I will leave him because he feels he is no longer husband worthy. He wants to convince me and the doctor that he is OK. And, so, the dance continues for another Vandy visit. Nothing changes. Meds stay the same. There is nothing they can do. We leave, and I want to scream, “You did not get the full picture of our lives.” Everything is not great. We are struggling in every way. Yes, my husband is better off than most of your FTD patients, but our life is not rosy. It stinks. Every day is hard.
That’s it. Our time is up. I want three or four more hours to talk. I want to share our story. I want to help more people understand this disease. I want to pick the neurologist’s brain about his own theories about FTD. I want strategies for negotiating the relationship between my husband and kids. My God. Please don’t dismiss us after 20 minutes and make us wait another six months for hope, no matter how illogical that hope may be. We’re done. Home in two hours. Another Vandy visit in the books. Another dashed hope for relief.
** Note: This is not a criticism of the fantastic Neurologist and research assistants at Vandy. They were great. It’s just the frustration over not being able to do anything to help my husband. Our situation is complicated by having school aged kids in the home with a parent with FTD. It’s one parent juggling so much for 3 kids and her spouse. The Neurologist is working to help us get hooked into a support group and on to some more clinical trials.
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