In June of 2004 Ryan and I fell in love with the movie “50 First Dates”.
With money tight and 4 kids we rarely went to movies so this was a treat. We agreed that it would be awful if that were to happen to us but we’d still find our happily ever after.
Now we live the Stephen King version of “50 First Dates”. There will be no happily ever after. This is FTD. This is our life.
June of 2004 was a big month. Ryan was promoted to sergeant with the Lee County Sheriff’s Department, we spent a week on Ft.MyersBeach as a family and we found our new favorite film, starring Drew Barrymore and Adam Sandler. Ryan and I are huge Drew and Adam fans. Life was going just as we had planned, finally. Little did we know what awaited us.
I sometimes wonder what we would have done had we known. We always talked about taking a cruise, just the 2 of us. Would we have done that? We always talked about going to Australia. Would we have done that? We always talked about taking the kids on an RV vacation to the Grand Canyon. I wonder if we would have braved it. Some things are givens: we would have planned better. We would have watched money closer. We would have made legal arrangements. But the truth is, by the time we knew what had happened to Ryan it was too late for cruises or trips to the Grand Canyon. It was too late to make legal arrangements the inexpensive way. And Ryan had spent every penny we had, and then some. By the time we knew what was happening, Ryan was already gone.
FTD is short for Frontotemporal Dementia. In the elderly, its numbers pale when compared to Alzheimer’s but in the young and middle aged, it is a near match. From the research we have now we know that for some there is a genetic link. We know of no certain link for Ryan, putting him in the category with 60% of FTD sufferers. It is believed to be caused by a mutant protein, the same mutant protein that causes ALS, better known as Lou Gherig’s Disease. There is no treatment, there is no way to slow or alter the progression and there is no cure. FTD is always fatal, an average of 3.5 years after first onset of symptoms. Ryan began showing symptoms shortly after we saw our favorite “date movie”. I first really noticed the changes in the fall of 2004.
What are these symptoms? Unlike Alzheimer’s, which first robs memory and only later personality, FTD robs first personality and then memory. Clogged by the mutant protein the brain cells in the frontal and temporal lobes slowly die, taking with them everything that made the person who they were, for it is in the frontal lobe that our personalities our housed, our likes and dislikes, our beliefs and opinions. Long before an FTD patient physically breathes their last their personality disappears.
Some of the behaviors are bizarre. For a complete list of symptoms please check out ftd-picks.org. Temperament changes, often causing the patient to become volatile, as it did with Ryan. They become apathetic, even laughing when one of their children is hurt. A once caring father that coached little league and loved to play with the kids at the park, Ryan became an irate recluse that the children feared. I began to fear him too.
Fear drove a lot of our responses to Ryan. Ryan lacked personal insight, common with FTD patients, and therefore refused all medical help until he could no longer refuse. He was diagnosed with a long line of psychiatric issues, none of which had ever shown up on the extensive evaluations given by the sheriff’s department or the US Navy. This misdiagnosis process is common too, because most doctors simply do not understand the disease.
In the process Ryan lost his job, we lost our home, we lost all our money, we lost our cars and nearly everything we owned. The world turned upside down and no longer made sense to anyone.
Finally, in January of 2007, long after Ryan had lost his ability to engage in meaningful conversation or care for himself independently, we received the diagnosis. I had thought that diagnosis day would bring relief and for a brief moment it did- until reality set in. There was nothing that could be done. There was no way to retrieve Ryan from the deep recesses of his mind. I would never again see his smile, not a manufactured one, but his, or hear his laugh. He would never again hold me in his arms or tell one of his boys how proud he was to be their dad. He would never again hold his baby princess high in the air and spin her around. Ryan was gone.
It is too late for Ryan but there are many more as of yet undiagnosed FTD cases that it is not too late for. We need to take action. We need to raise awareness about this devastating illness so that we can get research. We need research so we can find effective medications and eventually a cure.
And so it is for others that I stand to be counted amongst those who demand more for those with FTD. As I said, it is too late for Ryan, but it is not too late for you. Not one more family should be devastated by this disease. Won’t you join me and stand too? Together we can change the world. And who knows? The world we change just might be your own.
Welcome to our journey.