Sometimes . . .

. . . You are ask to do something and you don't realize how much it is going to affect other people. Such was the case earlier this month when I agreed to go to Washington, D.C. for the Hydrcephalus Association's Rally for Medical Research. This is important to me because there has been no significant research (emphasis added) involving hydrocephalus in fifty (50) years. Hopefully, by the time the rally ends on the evening of September 14th, we will have convinced our elected officials to increase funding for the National Institutes of Health by 2 billion dollars during FY 2018.

About a week or so after I committed to the trip, my wife took ill and I had second thoughts about making the trip. In preparation for the trip, I had been updating my Hydrocephalus education blog and posted the link to a new entry on my Facebook page. At the same time, I ask if I should consider cancelling my trip due to Marylou's health issues. The answer I got was a resounding "no"! I think my sister Darlene's response summed it up best:

"I love you and I'm ecstatic that this opportunity is given to you...Nothing selfish about it...you have earned this trip and I hope you go...probably once in a lifetime thing that most people don't get the chance...take it and let doctors take care of Marylou...love you"

Her comment along with those made by two other long-time friends helped me to realize that this trip was more than just raising awareness about hydrocephalus, I would be a voice for others who have a disability and can't make the journey to Washington. Not only that, but it would send a loud and clear message that those of us with a disability are like a "normal" person if we are given the opportunity to prove ourselves.

What is hoarding disorder?

Here of late, I have began watching Hoarders on Arts and Entertainment channel (Channel 38 on Comcast here in Atlanta) and was under the misconception that it was something of a new phenomenon. Turns out I was wrong -- I had been hearing about it for years, but knew it by another name -- Collyer's Mansion Conditions. It was originally coined by the Fire Department of New York (FDNY) to describe a residential dwelling (either a single-family dwelling or an apartment building) that is cluttered either by a collector or a "pack rat". I also learned the original name for such a situation was Collyer's Mansion Syndrome.

New York Police officers investigate conditions inside of the
Collyer mansion

What causes Hoarding Disorder? The exact cause is unknown, however, researchers have identified a number of risk factors including having a family member who also suffers from a problem with hoarding. Genetic research has recently shown that there are certain gene variants that might convey the risk of becoming a hoarder. There is also a confirmed correlation between brain injuries and acquired or secondary hoarding symptoms in some patients.

The symptoms of hoarding disorder - such as difficulty in discarding items - is usually first seen during the teen years. If these symptoms are not treated, the hoarding disorder tends to become chronic often becoming more severe over the decades. Interestingly, the Collyer brothers were an exception to this rule as both were in their early to mid-twenties when they began hoarding.

Is hoarding disorder treatable? The answer is yes. According to the American Psychiatric Association it can be treated using either medication or cognitive behavior therapy (CBT). Patients treated with CBT gradually learn to discard the unecessary items while, at the same time, experiencing less stress and diminishing their exaggerated perceived need (or desire) to save these possessions. They also learn to improve their organizational, decision-making, and relaxation skills.

To find help with hoarding disorder in the Atlanta area, contact.The Anxiety and Stress Management Institute