If you are like me, you are the seeker of a deeper understanding especially of things new to you. These are the most common questions asked when my husband’s diagnosis is shared. It is December 2017. Here is where we are in the disease.
What is this disease called?
FTD – Frontotemporal Dementia. It is the most common early onset dementia but very rare. Our local neurologist has one other confirmed case. Our specialist neurologist at Vanderbilt has five cases. It is a degenerative brain disease impacting people from age 30-70. The average age at diagnosis is 60. One article stated, “FTD is characterized by the insidious onset of personality changes, behavioral abnormalities and poor insight.” With my husband, his personality has changed from the quiet nerd I met 20 years ago. He now stops strangers to engage in conversation. The disease can present itself differently depending on which lobe is primarily impacted first. My husband is left lobe impacted which affects social behaviors.
How long have you known there was something wrong?
About 5 1/2 years ago, odd behaviors started to develop. They were mainly immature or inappropriate work behaviors like jumping out from behind a wall to scare co-workers. They were troublesome at the time but not enough to seek medical help. Other concerns were on my radar for years but no one fully believed or accepted that something wasn’t right with my husband.
When did you get the diagnosis?
We attempted to get a diagnosis in April 2015. The general practitioner was somewhat concerned at the symptoms reported (mainly memory) at that time. We visited a neurologist who performed a mini memory exam. My husband did well on it so the neurologist dismissed us. In hindsight, it was the behaviors that were much more relevant than the memory ones to getting a diagnosis. Early-onset dementia is very rare in a 46 yr old. There are many causes of dementia that are reversible that doctors rule out first. This makes getting a quick and accurate diagnosis difficult. Our world fell apart at the end of Oct 2016 and that put us back on the medical track. We received the first preliminary diagnosis of FTD in December 2016. It was confirmed in April and again in June 2017 by specialists.
What treatments are available? Aren’t there medicines to slow this down?
Sadly, the answers are none and no. Although, similar in some ways, this is not Alzheimers. Alzheimers has had much more research and drug development. FTD has not. The Alzheimer drugs actually cause more issues and do not prove to have any significant benefit in FTD patients. The only treatment available is antidepressants to try and suppress some of the obsessive and odd behaviors. Eventually, the symptoms cannot be suppressed by any drug. My husband has seen some benefits from cutting back on sugar. Ironically, one big symptom of this disease is craving sweets. This disease is cruel in that way.
Isn’t FTD like Alzheimer’s?
They are very different diseases in how they impact the brain. FTD causes shrinkage of the frontal and temporal lobes. The initial symptoms include loss of judgement and odd behaviors. The memory problems come much later in the disease. With Alzheimer’s, the memory issues present themselves first. The troubling behaviors come towards the end. FTD has several variations that impact language or behaviors primarily first. Eventually, both areas are impacted. My husband has the behavior variation, but he is losing his ability to recall the meaning of words and follow conversations already.
What is the prognosis?
This disease is degenerative and terminal. We do not know how long we have left with my husband. It varies from person to person. The literature says that the lifespan is typically 5 years from diagnosis. Most FTD patients spend the last few years in a nursing home. The amount of care becomes more than can be handled in a home care situation. Are we earlier in the diagnosis process than others? We are not sure. My husband is still working and driving for now. Eventually, he will not be able to do either.
What do you need? How can we help?
All I am asking for is acceptance, patience, and compassion. Our struggles are no greater than anyone else dealing with a major healthcare crisis. As a society, though, people understand cancer, mental illness, or a bum leg much more. Society is not nearly accepting of someone who looks perfectly healthy but no longer gets the nuances of social interactions. The reality is that my husband requires a lot of support to continue to function in our complex world. Our kids are struggling with this disease. He embarrasses them. They are being forced to grow up faster than their friends. Kindness to my kids is always appreciated. My husband nor my kids want people asking them about our situation. Please respect their privacy. They will talk in their own time and space. A friendly hug and “I’m thinking about you” works for me. I am learning to ask when I really need help – and that isn’t easy for me. Luckily, we have an amazing support system of family and friends. Please do not alienate us because you do not know what to say or do. Just be as you’ve always been – that is enough!
Have you thought about…. <fill in the blank>?
Yes — a ton of thought has been put into every step of this journey. We are bracing ourselves for the future. We’ve notified my husband’s company and know what his short-term and long-term disability plans include. We’ve met with an elder care attorney. We moved into a one-story, smaller house to save on mortgage expenses and prepare for some of the physical limitations. We are looking into medical trials for any experimental treatments or to help move the research forward for this disease. We’ve planned some great vacations while my husband is healthy enough to enjoy them.
I am a curiosity junky (kind of like you – Kathie)! How can I learn more?
There is an extremely bloated journal that I wrote in April primarily for my benefit. Feel free to read it to more fully grasp our journey over the last 5 1/2 years.
The Journey has only begun – Our FTD diagnosis April 2017