Hey again!

Today is day 3 of 4 of Caterwaul in Minneapolis, and I'm trying to get a few hours of rest before going to (at least part of) the late show at Mortimers. This weekend has been really fun, and I've actually had a few weeks of fun in a row visiting with friends and family. One of my best friends got married yesterday, and I'm so thankful I could be in town for it.

I've realized from speaking with people that there might not be as much awareness about what ALS is, and I don't know if I explained it well. I'll surely be repeating myself to some degree, but I want to make sure I don't downplay my condition or what ALS is.

ALS, also known as Lou Gehrig's disease or motor neuron disease, is a neurodegenerative disorder. If you remember the Ice Bucket Challenge, that was about ALS. ALS stands for amyotrophic lateral sclerosis. The following is copied from the ALS Association website:

”Amyotrophic” comes from the Greek language. "A" means no. "Myo" refers to muscle.  "Trophic" means nourishment. So, amyotrophic means "no muscle nourishment,” and when a muscle has no nourishment, it "atrophies" or wastes away.

"Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located.

As this area degenerates, it leads to scarring or hardening ("sclerosis") in the region."

There is no cure. There are a few medications available, but they cannot stop progression of this disease. They *might* slow it. This is a terminal illness. ALS causes you to lose use of your arms, legs, your speech, your ability to swallow, and eventually your ability to breathe. The life expectancy of someone diagnosed with ALS varies wildly. We really don't know enough to predict any one person's rate of progression.

I currently have significant difficulty speaking, eating and drinking. During my ALS Clinic (which I'll go into more), they assigned a % of loss of function to my arms, legs, fingers, elbows, etc. I have some loss of function (up to 50%) in most areas on my right side. I only have a little loss in function on my left side, which I barely notice. This is where that "lateral" part of "amyotrophic lateral sclerosis" comes in.

I'm pretty tired from writing all of that, so for now as far as the ALS Clinic goes I'll just say that I had a great experience meetings all of my doctors. We walked away with a TON of resources. For example, the ALS Association provides physical things like a shower chair or special straws. There was a whole catalog of things to assist me that I just need to request, and it will be sent to me. I have a lot of work to do to take care of myself, but have a lot of people here to help me in whatever way I need. For examples of what I mean when I say I have a lot of things to do - I have stretches and physical therapy to help ease stiffness in my right side, I have dietary guidelines to keep me at a healthy weight, I have paperwork and hoops to jump through for insurance. I am endlessly thankful that my mom is with me. My life would be a disorganized mess without her. I feel extremely lucky to have all of the support that I do.

I'm going to rest and try to rally - I'm REALLY good at staying home and napping, so we shall see where the night takes me.

Love y'all!