Sunday, June 30, 2013

My Diagnoses, By Alec Frazier

Hereditary Hemorrhagic Telangiectasia (HHT)

This is a disorder of the blood vessels, which gives me higher risk of stroke, nosebleed, hemorrhage, and other related difficulties. It also means that I am more susceptible to infection. HHT used to be called Osler Weber Rendu Syndrome. It is usually hereditary, through the female line in the family, and my mother has it as does her aunt. I found out that I had it after I got a stroke. I was rushed to the hospital, where they caught it on time, and have since altered my life accordingly. It was found that I had three lesions in my brain, and one in my lung. I have had brain surgery to glue one of the lesions that this is left on my brain. This actually took only about an hour, in which the doctors inserted a catheter into my groin, sending it up through a blood vessel and into my brain. I actually felt the catheter moving in my brain and asked them if that was what it was. They said, “Yes, now shut up!” I know that I will need additional surgeries to correct the other lesions. For the remaining lesions in my brain, they will not risk gluing again. Instead, they will use gamma radiation.

Hip Dysplasia

I was born in a breach birth, with my bottom coming out first in my head last. This caused, or at least contributed to my having Hip Dysplasia. What this meant for me is that the pelvic material was there, but the ball and socket joint was not formed. Prior to my birth, this would have meant youth in a wheelchair with later life being spent with successive artificial hip transplants. However, in the month prior to my birth, two Japanese babies had successfully had a new procedure done. Others were not so lucky, and died. I was the first person in North America to have the procedure done successfully. The new procedure entailed having several operations and other procedures done to electrostatically stimulate bone growth into forming the ball and socket joints. I then spent a year in a full body cast, and another year in traction. It is safe to say, that if I were born any earlier or at a different hospital I would not have the ability to walk today.

Sensory Processing Disorder (SPD)

Formerly known as Sensory Integration Dysfunction, many people have it, especially people on the autism spectrum, but few know that it has a name. Sensory Processing Disorder entails having higher than average awareness of input from one’s senses. Sounds are louder. Smells are stronger. Tastes are more acute. Textures are more noticeable. Visuals are more detailed. People with Sensory Processing Disorder are often also much more susceptible to sudden sensory input. This can make life distracting to say the least, and very difficult in extreme cases. To me, this means that extremely large crowds can be troublesome. Although I am able to sit in large classes of almost 500 people, if those people were partying and making a lot of noise it would be difficult. Flickering fluorescent lights are a problem for me, as is sudden touching. Make no mistake though, I love to give and receive hugs!

Attention Deficit Disorder (ADD)

People with ADD are very easily distracted, with our attentions drawn elsewhere. Sudden occurrences or interesting objects can easily distract us from previous involvements. One ramification this has for me is that reading is extremely difficult, since I am so easily distracted. As a result, I get my school books in digital format, so they can be read to me while I am also doing a secondary task to occupy my mind. There are many teachers and professors will tell you that a student who is doing work on a computer in class is easily distracted from their lecture. Because of my ADD, being on a computer in class actually helps me to pay attention by focusing my loose attentions elsewhere.

Dysgraphia and Digital Atonia

Dysgraphia is to writing as dyslexia is to reading. Whereas dyslexia is a disorder hampering understanding of the ordering of letters and words, dysgraphia is a disorder hampering the proper placement of letters and words while writing. Many people believe improper placement when writing is a symptom of dyslexia, when in fact it is dysgraphia. This is because dysgraphia is not nearly as well-known as dyslexia. Digital Atonia is a lack of muscle development in the hands leading to poor eye-brain-hand coordination. To counter my dysgraphia and digital atonia, I dictate papers on Dragon NaturallySpeaking software provided by the Nuance Corporation. I am able to train it to recognize my voice, and I am able to speak to it naturally, while it transcribes my speech on various programs such as Microsoft Word or Facebook.

Bipolar Disorder

Bipolar disorder used to be called manic depression. It is not called that anymore, but unfortunately many people do not recognize this fact. Bipolar disorder entails having periods of high, happy feelings, and periods of low, unhappy feelings. People have a right not to take medication, and I am against radical amounts of medication. But for me, moderate amounts of medication have helped with a number of my diagnoses, including the high-low swings of bipolar disorder.

Obsessive-Compulsive Disorder (OCD)

Obsessive-Compulsive Disorder or OCD is about exactly that: obsessions with particular topics and compulsions to do specific things. There is a misconception that OCD is almost completely about the compulsion part. This is not true. For me, my obsessions involve focusing in detail on various topics, such as architecture, government, photography, and Star Trek. You’ll notice that these obsessions are also hobbies. In my world, if I am going to have obsessions, then they might as well be fun! For me, compulsions have been about such things as straightening out the cricks in my neck and doing things favoring the right side of my body.

Asperger’s Syndrome

Asperger’s Syndrome, which is a form of Autism, is not a disorder but a form of neurodiversity. Neurodiversity is a recognized form of diversity, entailing diversity of the forms of the mind. It is as natural as diversity of skin color and sexual orientation. It is also inherent as is gender and religious affiliation. Asperger’s Syndrome is a form of autism which is no longer officially recognized by the diagnostic index, but it should be. Instead, all formerly recognized forms of autism are lumped together under the title Autism Spectrum Disorder (ASD). In reality, there are vast differences between various types of autism. Like people with all forms of autism, people with Asperger’s Syndrome, I have a tough time interacting socially, and can have mood swings and a degree of emotional variation from time to time. Over the 27 years of my life, I had become to a large degree able to socialize with other people in a structured setting. Therefore I have a tendency to find friends in clubs and organizations of like-minded people. Interpersonal relationships between myself and other individuals tend to be more difficult. I do get pretty emotional at times, but I do my best to keep this in check on a social level.

1 comment:

J.R. LeMar said...

Wow. I knew about the autism, but not all that other stuff.