My name is Ashley and my 55 year old mother has ALS.

My Introduction

Hello. My name is Ashley. I am a 24 year old who was living in South Jersey until recently when I decided to make a move to Florida to be with my mom, a 55 year old diagnosed with ALS (amyotrophic lateral sclerosis).




Mom and I during my visit in Oct. 2013

What is ALS?
Does Lou Gehrig's disease ring a bell? Lou Gehrig was a professional baseball player for the New York Yankees who was diagnosed with the disease in the 1930's. Many people are unaware of this progressive neurodegenerative disease. The disease damages the neuromuscular system which allows the human body to move (i.e. breathing, swallowing, running, walking, talking). Over time, the disease causes motor neurons to disappear so muscles do not receive signals and gradually paralyze the body. There are different types of ALS. My mother has Progressive Bulbar Palsy (PBP). PBP begins by attacking the controls of chewing, swallowing, and breathing.


How to pronounce the name amyotrophic lateral sclerosis (ah-my-uh-TRO-fik LA-tuh-rul skluh-RO-sis)

A is for without
MYO for muscle
TROPHIC for nourishment
LATERAL for side
SCLEROSIS for hardening or scarring

My Wake Up Call

After a few months of knowing my mother had ALS, I was in denial about it. I didn't realize how terrible it really was. One day, I was at work and someone hugged me and said,  "I am so sorry to hear about your mom." It hit me, my mom is living with ALS. I reached out to my boss and was lucky enough to get two weeks off in October 2013. During those two weeks, I witnessed my mom struggle with breathing, swallowing, eating, walking, talking, and her feeding tube even fell out. It was tough. It was heartbreaking and I didn't know what I could do. I am thankful for that visit because if I didn't get the chance to see, I wouldn't be with her today and I would still be in denial.

Mom found "the one!"

 

ALS is a full-time job for her. She uses several breathing machines, a machine to clear her lungs, a machine to clear mucus, and an oxygen machine while she sleeps. In addition, she has a wheel chair and powered bed(as shown in above picture) to help move her up and keep her going. She can't take her medicine orally but smart enough and lucky enough my mother has a feeding tube for that. All her water, medications, and nutritional meals are through the feeding tube that was placed in her stomach by the Mayo Clinic in Jacksonville in the summer of 2013. Without that, she would be without these everyday needs. Her speech is alright. I understand her and her boyfriend understands her but if she were to answer the phone, the person on the other line wouldn't have a clue. I have heard her say before, "I have ALS, I have a hard time speaking." Who was on the other line? Someone calling from a doctors office. You'd be surprised how many people in the medical industry have NO clue what ALS is.

 

Why I Am Blogging?

I am blogging to keep my family and friends updated with how my mother is living with ALS. I got this idea from my sister-in-law who is all the way in Alaska who blogs about how my nephews, niece, my brother and herself are doing. In addition, I am hoping this blog will help spread awareness.