Puppy love, Literally.

This morning I woke up, walked into the living room and saw my mom and it made me so happy. Every morning I wake up and see her it brings me much joy. It is an amazing feeling to be able to be here with her. I know I sound like a broken record but it is the truth. After a shower this morning, I came into the house and saw her crying and I didn't know why. I always ask. I am curious and I want to make things better. If I can make her laugh that is a plus. Most of the time I just change the subject because I don't know what else to do. Well, she was crying because of this blog. It was touching. It brought tears to my eyes and it is bringing tears to my eyes as I write this. I love you Mom and I thank you for reading my blog. It is dedicated to you!

Today I spent time doing things around the house, ran some errands, became apart of my mothers community, and just spent time with mom. I caught her playing with Obie, our 9 year-old Yorkshire Terrier. He is still so playful and loving. The love he has for my mom is simply unconditional. If it's late at night and she isn't in bed, he will come out of her bedroom then sit and stare at her like, "UM! It's time for bed!" The reason I am bringing up Obie is because no matter how many people call dogs dumb, I swear to you dogs are brilliant! I feel like Obie was in denial about moms disease for awhile. He would never go on walks with me or anyone without having to legitimately drag him down the street (he was never, ever harmed; calm yourselves). He would continually look back thinking she was going to come sprinting for him. Now that he is through his denial stage, he just hides under the bed because he knows she is unable to take him for a walk. He wants to be around her all the time. In addition, my moms boyfriends dog Mickey, a 10 year-old West Highland Terrier, understands as well. When mom cries, Mickey will go over and sit by her to comfort her. It is unreal how dogs know things.

Mom Update: Today was good. She ate a lot more than normal which is great. She had a protein shake, oatmeal, and a sandwich. No dinner but we left a plate for her. As always, she has a positive energy and everyday she stays smiling. I actually am thinking she should be a stand up comedian. She swears that ALS patients turn into comedians.

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.