Tuesday, December 31, 2013


I had an awful day today.

I was sick in the morning despite a good rest, and had to do yoga sitting down. After 2 weeks without crutches, I was suddenly back on them, struggling to get along.

When I got on the bus to go to dog training, I was told there was a new rule now. Service dogs must lay on the floor of the bus now (this has always been the rule, but apparently there is a new effort to enforce it). I froze. My doggy practically needs to be wrapped around my neck when I travel. The pressure lowers my heart rate when I am having an episode. Not to mention the soft fuzzy fur and yummy smell.

But I had to comply. I walked onto the bus and put my dog in a down on the floor. No, not working. I started getting distressed. I tried to sit on the floor with the dog between benches, but it was too tight. My vertigo kicked in. I got sick and dizzy. I began to panic. I finally moved to the back section of the bus, and sat on the floor with my legs wedged against the back of a bench, doggy in my lap.

I was on my way to have my dog assessed by a institute that trains service dogs. I was already told that most dogs are not deemed suitable due to temperament and other issues. I have been struggling with the prospect of giving up my dog for a trained service dog. So the journey felt like a death march, empty and meaningless.

Today there were few riders on the bus. But how in the world would i manage on a normal day? How will I ever get anywhere? This new rule spelled the end of my independence, I was sure. It seemed hopeless. I became increasingly agitated and started sobbing. I wanted out.

If this weren't too much, I had to pee in a stairwell at the trolley station, since no one bothered to unlock the restrooms. And I thought about the revenge poop at the West 4th Street Station in New York – in the stairwells, and on the escalator, round and round. And I thought about the dog whose front leg was degloved after his toes got caught in an escalator grill.

And I downed a fistful of doggy kibble that I mistook for my salty snacks in my confused, low oxygen state. It took a minute for the taste to register. "Hmmmm, where's the salt?" It tasted gravelly and strange. Dog looked concerned at my newly acquired taste.

I had an amazing day today.

My dog passed the test with flying colors. He was perfect and charming – absolutely calm. I should have had more faith in him.

When I got on the bus to come home, the bus driver told me to make sure I had a good hold on the dog. He waited until I sat down, lifted my doggy onto my lap, and wrapped my arms around him, before taking off.

Wednesday, December 25, 2013

Let's get excited: Performance anxiety and autonomic failure.

American Psychological Association article on getting excited versus calming down.

A recent study suggests that trying to "calm down" focuses one on the negative, whereas "getting excited" promotes positive feelings about an upcoming performance and helps one better negotiate the situation. I have no idea how this observation relates to anxiety produced by physical triggers, such as with Dysautonomia. So I decided to do an experiment.

Orthostatic intolerance is one of the syndromes associated with Dysautonomia. It is a fancy name for the inability to stand – specifically it describes a condition wherein the normal autonomic response to standing fails. When a healthy person stands up their body automatically regulates their blood flow to compensate for the change in direction (vertical versus horizontal), ensuring the organs continue to receive blood, oxygen, and nourishment. Normally, we don't have to think about this. But for those with autonomic failure, the body cannot make this shift (or any other changes that are normally regulated automatically). Instead, blood swells up the legs and feet, leaving one's head oxygen poor. Keeping in mind that dysautonomia patients already suffer from low blood pressure and reduced blood volume, you can perhaps imagine how dire this situation may become. Without oxygen, the brain flounders, unable to function. Some of us pass out repeatedly because of this failure. Many dysautonomia patients are relegated to a wheelchair, with an oxygen tank below and IV bag above, to prevent them from losing consciousness and their veins from collapsing.

But the real fun begins when the body attempts to compensate for the lack of oxygen by triggering repeated adrenaline surges. These hormonal surges speed up the heart rate and the flow of blood through the body – but do not solve the problem. Rather they create additional problems because an adrenaline release is always accompanied by anxiety and panic. It's just the way our bodies have evolved. One does not occur without the other. Each time a dysautonomiac stands up, we instantly panic. There are frequent and alarming surges in heart rate and palpitations. Chest pain, intense pressure, and a feeling of suffocation are not unusual. The problem compounds the longer we stand, as blood pressure continues to drop until the time we can get our head down as low as possible and our feet up high.

So here is the experiment: I decided I would stop trying to "calm down" (which allegedly promotes negative thoughts), and instead, each time I stand up, I will "get excited".

Yay, I am standing! Fantastic! I can do it! I won't fall over! I will stand up and walk into the kitchen! Feet: step forward – not sideways! What a glorious excursion - past the bedroom window, stepping over the threshold, walking along the hall. Outstanding! Legs don't fail me now! The performance is about to begin! I will pour some water – and I won't spill! I will not choke and spit up! No, not today! For today's performance is special. I will bend down and pet the doggy – without getting dizzy and sitting down! Dizziness go away! I am excited, and my excitement WILLS you away. Vertigo, be gone! It's show time! Confusion, numbness, terror – you, too, are banished! I am turning over a new leaf! I am standing on the great stage of the kitchen! Fuck "Top Chef". We are "Conscious Chef" today, and we will NOT sit down! We will not lay down in the middle of our finest hour!

Not sure how long I can stay excited. It's tiring. I'll let you know how it goes.

Monday, December 16, 2013


It is hard for people to understand the intermittent nature of neurologic and autoimmune disease. With dysautonomics problems with motor coordination, balance, speech, cognition, or breathing are sporadic. This pattern is confusing to people. Generally inconsistency and instability are met with suspicion or fear. But in fact we all function intermittently. Each day is broken into a cycle of activity followed by, and perhaps interspersed by, rest and recovery. While in repose, our brain is renewed, flushed with fluid. Memories are sorted and arranged. Damaged muscle cells repair.

Maybe an easy way to think of dysautonomia is: A condition wherein one's normal cycle of activity and rest are radically shortened. A short burst of activity must be followed by rest.

Or maybe it is easier to think of a dysautonomic as a car with a gas tank the size of a thimble. You can eventually make it to where you are going, but there are logistics to solve along the way. Often. Unexpectedly. Intermittently.

Thursday, December 12, 2013

Study: Autoimmune and Autism symptoms treated through Virus-like conditions

In a recent post I speculated about the relationship among: viruses, transposons, and genetic autoimmune or neurology disorder, and pointed out that some autoimmune and neurologic patients rarely contract viral infections. Today information from a recent study indicates we can improve the symptoms of such diseases by mimicking the conditions caused by viral infection in autistic patients. Hot baths and parasitic worms were used successfully in this study. The article also describes how the natural contraction of viral infection and fever improves symptoms in autistic patients.

Could a Tiny Worm Help Treat Autism?

When will these techniques be tested on those disorders which share the same genetic mutation as autism spectrum disorder, such as Bipolar Disorder and Schizophrenia? And what about other autoimmune disorders, such as Dysautonomia? It would be exciting if we could improve symptoms in this way, without the side effects of detrimental chemicals. I would love to climb into a bath of hot worms.