Many people have asked how we came to this diagnosis of Frontotemporal Degeneration (FTD). It’s been a long and difficult journey, the telling of which may help others facing similar situations.
Rich and I have been together since we were 22-years-old. We are 58-years-old now. In the beginning years of our marriage, Rich would occasionally struggle with some mild depression. It was usually a situational depression, meaning that it was linked to something stressful going on in his life… in our lives.
Rich grew up with a mother, God bless her heart, that was bipolar, so we have always known those genes ran in the family. There was never anything major with Rich. He took antidepressants a couple of times and they were helpful, but mostly he managed any mood disorder he experienced through exercise and eating healthy. Rich has obsessively worked out all his life. This is something that continues to serve him well today.
As time went on, the sleep disorder that Rich has dealt with all his life, worsened. He has a condition called REM Behavior Disorder (RBD). It makes him act out his dreams (the Rapid Eye Movement part of sleep). This makes him really dangerous to sleep with, especially since he has a Black Belt in Kung Fu San Soo. That topic should be a whole other blog. LOL The reason I mention it here is that we often thought his worsening mood disorder was due to his horrendous sleep cycles that left him (and me) chronically exhausted. We have since discovered that RBD plays a role in some brain disorders such as Parkinson’s and FTD.
In about 2007, I remember thinking that his occasional mild depression was not feeling so occasional. His anxiety was also increasing. He would go through bouts of Obsessive Compulsive Behaviors, too. I have a memory of talking to my mom about his depression and feeling a sense of dread that something big was coming.
In June of 2008, Rich went into a full break down. He couldn’t stop crying and was crawling out of his skin with anxiety. With the help of his personal physician, John Moore, MD (God rest his soul… he just died unexpectedly five days ago) and close family friend, Brenda, our two adult daughters, Tara and Ashley, and myself, we were able to keep Rich at home until he got his feet back under him. I knew then that something was happening and we needed to find out what was going on.
Rich had accomplished a lot of personal therapy to deal with the issues about growing up with a mentally ill mother and he knew that what he was experiencing was not about “issues.” His mantra has been and continues to be: “I love my life. I love my wife. I love my job. I love my children. I love my granddaughter. I love my family. So why do I feel so horrible inside?!” (Rich is an attorney who has been the “Guardian ad Litem” for 1000’s of children since 1989 who have been abused, molested and neglected. These children go through the “system” and he is their legal representation. He has literally saved so many children… he is very good at what he does, too, and he has loved it. He had to stop work on March 15, 2013 as he could no longer “hold his space” with his emotions due to this horrible disease.)
Since 2008 we have been to many mental health experts because this appeared to be some bizarre presentation of depression and anxiety accompanied and possibly exaggerbated by his sleep disorder. As a Marriage, Family Therapist, for almost 30 years, with a doctoral degree in Psychology, I knew, and I mean I KNEW, that this was not a normal diagnosis of depression, anxiety or bipolar disorders. Each MD would come up with another cocktail of medications that “should help” stabilize him. Some meds helped a little for a short time and then abruptly stopped helping. Some made him far worse and I would have to demand he be taken off that medication. All were very expensive. As two self-employed people, we have TERRIBLE medical insurance and NO PRESCRIPTION COVERAGE. UGH!!!
In December 2011 we went to the Amen Clinic and had spec scans done of Rich’s brain. These scans showed that the metabolism (the blood flow and energy pathways) of his brain looked like “swiss cheese.” The problem was that they couldn’t tell us exactly what that meant. They advised an immediate follow-up MRI of his brain because they feared he may have brain cancer. The MRI showed nothing unusual. In the mean time, Amen Clinic told us that this was one of the worse spec scans they had seen in 20 years. The only other one this bad was of a man who painted automobiles in his garage and inhaled fumes for 20 years.
Rich has never done drugs. He is a very light drinker and always has been. He has never smoked. Rich works out obsessively and always has. At times he has been a health food fanatic (annoyingly so sometimes… can you say OCD?! LOL) but has always eaten healthy. Until very recently, he has never struggled with his weight. Part of FTD is obsessive food cravings. Rich now struggles with this compulsion.
In February 2012 we saw another mental health expert. He felt Rich was suffering from a major depression and possibly an unusual presentation of bipolar disorder. I kept saying, “If this is bipolar, I have never seen anything like it in my 34 years in the mental health field.” He believed Electro Convulsive Therapy (ECT) would help. Rich did 18 treatments of this difficult therapy and it did not help him. (After a lot of research about ECT, I do know that there is merit in this severe approach for some people.)
We have been at our wits end. I finally said, “We need a neuro-psychologist to examine your brain. Something just isn’t right here.” After extensive neuro-psych testing, which uncovered areas in which Rich’s brain was not functioning as would be expected (he also showed some areas of genius mental functioning), and a new, very detailed MRI of his brain, the neuro-psych said he wanted to meet with me alone. This actually made Rich really mad. He said, “It’s my brain… my life… I want to hear what’s up.” I said, “We want Dr. McGee-Williams to speak candidly and not soften it because you are there, right?” He agreed that he would lose it if something were horribly wrong so he stayed home… pacing and upset, waiting for me to return.
Dr. McGee-Williams and I met for two hours and he went over all of Rich’s brain testing. Bottom line is he was diagnosing him with Frontotemporal Degeneration. He said that a diagnosis of brain cancer would have been more humane. I agree.
Rich has the behavioral component of FTD which means the disintegration of his brain has begun in his frontal lobes. This is the part of the brain that controls emotions. FTD continues to create holes in the brain, ruining emotional stability and eventually moving into the temporal lobes. This part of the brain is responsible for language, speech and communicating, among other executive functions. Eventually his brain will not be able to tell him how to do his autonomic functions such as breathing, blood pressure and heart rate. His physical condition will remain good, as long as he can move, exercise and feed himself. So he may end of being all “braun” and “no brain” running that beautiful and extensive braun that I hold in my arms every night.
Okay… trying not to get emotional here. I need this to be a factual account of our journey into FTD. It has been an amazingly stressful journey. We are in the process of seeking another opinion from Bruce Miller, MD, who is a world renowned expert on FTD with an Aging and Memory Clinic at UC San Francisco. I cannot imagine him telling us it is not FTD as it is the only thing that has really fit all of Rich’s bizarre and horrendous symptoms. We shall see. I am TOTALLY OPEN TO MIRACLES!!!
I just had Rich read this blog entry to make sure he was okay with all this personal information. He said, “It is all the truth and if it helps someone else on this journey, then I’m okay with the disclosures.” He is so brave. I love this guy… always have… always will!