“I Am Not Average ” Chapter 41

I want to start this post with an apology for missing the past two weeks, the simple fact is this shit is hard. It is getting difficult to type using my hands to type and it was a bit upsetting.

But, like the Eminem sang, “look who’s back, shady’s back “. I am back and FCK ALS.

When I first heard I had ALS I had no idea what it was so I thought I would give you a little information.

Once diagnosed with ALS PALS are put into one of two categories.

Sporadic ALS: Sporadic ALS is the most common form of the disease, accounting for approximately 90-95% of all cases. It occurs randomly without any clear genetic or familial association. The exact cause of sporadic ALS is still not fully understood , and Veterans are twice as likely to get it.

Familial ALS (FALS): Familial ALS refers to cases where there is a known family history of the disease. About 5-10% of ALS cases are familial, and it is usually inherited in an autosomal dominant pattern, which means that a person has a 50% chance of inheriting the disease if one of their parents carries the mutated gene.

While Sporadic diagnosis doesn’t garentee ALS won’t be passed on it is far less likely.

I fall under the sporadic category which was a blessing. I have read one family has over 20 PALS.

SOD1, or Superoxide Dismutase 1, is a gene that provides instructions for making an enzyme called copper-zinc superoxide dismutase. This enzyme is involved in the protection of cells from damage caused by reactive oxygen species (ROS), which are highly reactive molecules that can harm dcells and their components. When PALS are genetically tested they look specifically for SOD1. This test helps determine familiar or sporadic. Fortunately for me I do not have the mutation.

The other thing to determine is if you have limb onset or bulbar ALS.

I have bulbar, it started in my right eye and tongue.  This is said to be the more aggressive of the two. Most people experience limb onset ALS, in which symptoms begin in your arms or legs. They are the PALS you hear about living years longer than the average 2-5 years. But 25% of cases are bulbar onset ALS, in which symptoms start from affected neurons in the corticobulbar area of the brain stem.

Again I say FCK ALS! I am not average, and if I am, I’m not living an average life. I hope this gave you a little more insight on ALS.

Today I may be physically wheelchair bound but my mind still travels the world. I challenge you to do something everyday with or without limited abilities. Enjoy what you have now because only God knows our future.

Love and blessings