a general overview

My name is Talia Feldman, and my dad was diagnosed with Benson's Syndrome a few years ago. Though I'm no scientist (just a mere 16 year old..), here's a brief explanation of the disease:

Its fancy, scientific name is posterior cortical atrophy. It is a form of dementia in which atrophy is caused in the back of the cerebral cortex, resulting in a progression of disruption of complex visual processing. The posterior region of the brain houses the occipital lobe, which is the region of visual processing. Benson's syndrome is a progressive disease, meaning that it worsens with time. It is usually first diagnosed when symptoms such as difficulty in reading, problems with numbers, writing, and light sensitivity show up. The disease can later cause the inability to recognize people, memory loss, and a decline in literacy and driving skills.

 In my case, the disease affected my father's speech too. Expression is difficult, and rather frustrating for my dad. He knows what he wants to say, but his speech takes a long time to develop, and I often end up finishing his sentences. He forgets words, and has a tough time developing full thoughts. 

I'll briefly start with the chronological symptoms that a young daughter, (me), observed. Initially, numbers were mixed up, and simple math was a burden on my dad. Then, letters and words were affected too. Birthday cards were especially difficult, as my dad might spell simple words wrong and not even notice it. (At the point in his progression, the disease hadn't yet been diagnosed, and I had no idea what was going on...) He had several sight problems, and constantly had eye appointments. Soon enough, he couldn't drive at night. This, in turn, progressed into not driving on the highway, and then not driving at all. (Now he has a handicap.) After about a year or two of noticing the smaller symptoms, having to do with his visual processing, I started to notice his speech worsening. Like I explained before, he couldn't develop his thoughts, and often I finished his sentences for him. 

I do want to put out that I don't know enough about this disease in terms of science to fully inform you. In fact, it is new, having been discovered in 1988, and is pretty rare. Therefore, there actually hasn't been much research on it at all, but I'll talk about that soon... Basically, my observations are personal, and I don't have the scientific knowledge to explain everything or prove anything. 

Dealing with my dad has been a journey. And I definitely took the difficult path when deciding to be involved, and be there for him, even if he couldn't mentally or physically fully be there for me. I am proud of my decision to support and love him unconditionally, and visit him, even when it pains me to see his progressing in the disease. This journey has put both an emotional and economic toll on my life, and has contributed to a lot of anxieties and fears in my life. But it has been a journey worth taking, and I honestly feel that it has enriched my life, and kept me thinking realistically and supportively. 

This blog is called dealing with deterioration. I named it this way because my dad's mental state has been deteriorating over the past years, and I have had to constantly deal with it. I want to share how I've dealt with it, and how it has affected me as a person. It's the most painful thing, to watch your own father deteriorate. To watch your dad lose his privileges and abilities as yours are strengthened and flourishing. But in my case, it is more important for me to deal with it in pain instead of avoiding it in all.

The reason I started this blog is simple; I want to spread awareness. My dad certainly isn't the only one dealing with this disease, and I'm certainly not the only child witnessing their parent deteriorating. Benson's syndrome is rare, and under-researched. My goal is to catch the attention of people, start asking for more research, share my observations and stories, my hardships and my accomplishments in dealing with it, and to have an outlet for my own experiences.