Approximately two years ago my husband began exhibiting the classic symptoms of FTD: apathy, social behavioral changes, lack of decision making, irritability, confusion, etc. It was not until last May that he mentioned he had some twitching going on in his biceps and asked a physician friend what to do.

Subsequently he had an MRI in addition to other neurological tests. By the first of July he had been given a definitive diagnosis of ALS. However, it was not until my researching ALS on the computer did we come to realize the cognitive component of ALS known as FTD. What a relief it was to know his behavior was indeed a result of his illness and not an intentional personality change.

Since the 8 months of his diagnosis, I have noticed more of a decline with regard to his dementia than his physical decline with ALS. His hands and arms have definitely lost strength but he is still able to lift a gallon of milk with two hands and, most of the time, button his pants and shirt. He "retired" from a long career (25+ years) with BMW automobiles January 30, 2009. Since then he has just been volunteering at our daughter's elementary school helping in the library.

We have two children ages 14 (boy) and 11 (girl). Life in our household continues to get more and more challenging as we witness my husband's decline mentally and somewhat physically. I find the most frustrating part of this whole situation is the lack of support within the area I live. I have been involved with the ALS association support group, but there are no patients within this group who have the same diagnosis as my husband. It truly is hard to relate what it is like living with a spouse (although I feel I lost my spouse long ago) who is regressing to a childish state with no realization that it is happening.

Our doctors have suggested he stop driving but we have yet to take the keys away. Remarkably, he does well driving, but I try to do the majority of it. I question when we will KNOW the right time to take the keys away or are we just waiting for an accident to happen??

Lately I am also questioning whether my husband just has FTD with symptoms that mirror ALS in terms of the muscle fasciculations. It seems like people with ALS typically progress faster especially if they have the added component of FTD???

I continue to be in disbelief that this is truly our life now and how the last 8 months have truly changed our lives in so many ways. Many days I feel alone on an island with no one to really understand what our life is like on a daily
basis while continuing to raise two wonderful, bright and intelligent children. I certainly can attest to what it must be like being a single parent because in many ways I am. Socializing with our friends or at parties is much more
challenging due to my husband's unpredictable and embarrassing behavior. With tremendous guilt, I do find myself wondering how long this is going to continue and if and when will I know that we will need to put my husband in
assisted living. What will be the next stage of the disease and will my children and I be able to hold it together without losing our sanity.

I look forward to knowing there are others out there who can share their experiences with me and be comforted to know that we are not alone while dealing with this insidious disease.