Determine the Truth, Defy The Odds!

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  The truth can actually save lives! A little over a year ago, a doctor told me my brother Geoffrey’s brain was deteriorating and there were no treatment options. A second doctor said the same thing. Just before Thanksgiving, my brother w...

 

The truth can actually save lives! A little over a year ago, a doctor told me my brother Geoffrey’s brain was deteriorating and there were no treatment options. A second doctor said the same thing. Just before Thanksgiving, my brother was walking near a Con Ed construction site when he fell. He got back up, and fell again. This happened 4 more times before the workers called for an ambulance. The ambulance team thought my brother was drunk, which really upset him. As an adult on the Autism Spectrum, my brother is extremely sensitive of society’s labels for him and their general lack of understanding of his brilliance and ability to forge solutions, before most have even figured out there’s a problem. Long before these balance problems began, my brother’s ability to speak had declined dramatically. I’m sure it was a confusing picture for all these folks who thankfully came to my brother’s aid. When Geoff came over for Thanksgiving, he could barely stand up, let alone walk. It was shocking to see such a huge progression in a very short period of time. As a consummate cheerleader, I did my very best to make this holiday great. I’m pleased to say my pork roast came out exquisite, much better than last year, and I made all of my brother’s favorite side dishes. Both passionate lovers of music, I played an eclectic list of our favorite songs on You Tube. Thanksgiving rocked!

As a veteran analyst supporting business heads to drive p&l growth, you have to start with the truth. You have to challenge the validity and relevance of all the data and information you receive. You need a solid foundation supported by key metrics that tell a believable story. That truth, combined with experienced judgment and passionate innovation, then puts you in a position to defy the odds. I’m not sure if the drive I have in my career helps me to achieve success as an advocate to my brother, or the other way around. I do know that I have tremendous energy and drive and that I never give up in pursuit of the truth and greater understanding!

I have been seeking greater understanding and solutions for my brother for many years. I knocked it out of the park in 2010, when I got my brother placed with a wonderful organization called Special Citizens Futures Unlimited. Serving adults and children with Autism since 1976, SCFU was started by a sister of a brother, and their mom, long before most people even knew about Autism. They have a client centric focus that is unparalleled, and they are the only organization we have ever dealt with, that demonstrates true commitment to my brother. http://www.specialcitizens.org

I learned about my brother’s rights and available Autism resources in the NY metro area through a terrific organization that offers advocacy to family members, called Asperger Syndrome & High Functioning Autism Association. AHA was founded by a brilliant and compassionate social worker mom whose son was diagnosed later in life, in college. That’s something we see frequently for older “Aspies”. My brother was actually diagnosed at age 44. While it was clear from birth that he was different, doctors used terms like “organic brain syndrome” when we were growing up. AHA offers monthly support group meetings for family members and sponsors an annual conference at Adelphi University. A few years ago, I was honored to meet one of the featured speakers, Temple Grandin. You might recall the HBO film about Temple. Actress Clare Danes won the Emmy for Outstanding Lead Actress in a Mini Series or Movie for her portrayal of this incredible woman. As a young child diagnosed with Autism, doctors told her mother that she should be institutionalized. Mom never gave up and Temple went on to make game changing innovation by creating a more humane process for the slaughter of cattle, also improving the bottom line p&l. She has now designed the facilities in which half the cattle are handled in the United States, consulting for firms such as Burger King, McDonald’s, Swift, and others.

http://templegrandin.com

http://ahany.org

As to my brother’s current challenge, I started to see problems about 9 years ago. He would be in the middle of speaking a sentence, and then suddenly unable to finish the thought. Then a bad fall landed him in a local hospital. He was eventually admitted to a regional medical center with suspicion of meningitis. The spinal tap came back negative and doctors were never able to diagnose the problem. He did bounce back after that, with his speech improving. Then in 2012, he declined again. The speech difficulties returned; there were distinct personality changes; and he had difficulty remembering new people he met. He also started walking slowly, although at the time I did not make the connection. A neurologist diagnosed him with Alzheimer’s. I didn’t believe it, but many people advised me against getting further opinion, as my brother’s situation was complex. Eventually, I did seek a second opinion with a leading Alzheimer’s expert, who confirmed my suspicion and refuted that diagnosis. Beyond that though, she did not offer a concrete diagnosis. She discouraged further evaluation and said there were no treatment options. Determined to make the path forward as positive as I could, I took my brother to his former long time neurologist where we grew up in Long Island, a brilliant & compassionate “New York Top Doctor”, who my brother and I adore. He was so excited! I went in with very realistic expectations and Dr. Barbara Allis surprised us all and sent our hearts soaring with her take of the situation! As a physician with laser focus on the side effects of neurological drugs, she diagnosed Parkinson’s Syndrome due to long term use of Geodon, a very powerful psychotropic medication. She immediately ordered a reduction in dose and follow up 1 month later. While it’s unclear how much of this damage is reversible, she feels strongly we can improve the current situation! It’s very difficult to manage the behaviors that accompany Autism spectrum disorders. Often, Aspies take a cocktail of meds and I am now learning, there is little long term empirical evidence as to what these drugs do to the brain. I was surprised to find this National Institute of Health publication. “..Research by Christian, Snycerski, Singh, and Poling (1999) indicates that practitioners know relatively little about these drugs and would like to know more, and our experience in a variety of applied settings confirms that this is the case…” Further, you can see the pharmaceutical industry plays a major role in our healthcare system. Autism experts recommend cognitive behavior therapy in combination with pharmaceuticals, but of course it always comes down to budget funding and whether providers take insurance. I suspect, as the incidence of Autism is growing, and there is increasing understanding, dialog, and scrutiny, we will begin to see some change in these practices. I know I will be involved in that discussion.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3004683/

http://www.cnn.com/2014/03/27/health/cdc-autism/index.html

As to my brilliant, lovely, and amazing brother, we are now reforecasting his Thirty Year Plan. Land a job; keep building model airplanes; get a ride on a Bell Boeing V-22 Osprey; and of course return to Disney World in 2017 with his energetic, rock & roll sister.

Determine the Truth! Defy The Odds!

https://www.youtube.com/watch?v=VGbf9txZWMA

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