What a week!

This past week was busy, busy, busy!

On Saturday 11/16, my Aunt arrived with her boyfriend and I hopped onto the auto train in Virginia with my arrival being Sunday late afternoon. The following day my brother arrived from Alaska. It was awesome to see how happy my mom was having everyone around. The last time we saw my brother was too long ago and the last time the three of us were together was forever ago.

The week went by too fast. My Aunt stayed til Wednesday. One night we had a grilled chicken dinner compliments of my Aunt and her boyfriend. Mom didn't have enough energy to come out to eat but she got to enjoy the company. On Wednesday, my brothers birthday, mom came out to the dining room for a nice Italian dinner and dessert. It was awesome. We all laughed and told stories. It was a great time.

Yesterday, my mom had the energy to come for a drive to the beach. It was a moment I won't forget. My brother held her one arm while I held her other as we walked up the boarded ramp and overlooked the ocean. It was beautiful. It didn't last long, but the time it did I could see how happy it made her. Afterwards, we stopped by a river near The Chart House and spotted a dolphin. We took some pictures of all of us together. It was a gorgeous view. When we came back home, we cooked up some food by the pool while my mom rested in bed with the sliding door open so she was still apart of the fun but she came outside here and there. She ate as much as she could. She hardly eats because of pain, so it is rewarding when she does!

 

 

 

 

Today was my brothers last day. It was hard to say good-bye. My mom kept saying to herself, "I won't cry, I won't cry," but we all knew she would. Afterwards, I gave my mom comfort and she took a nice long nap as I cleaned up around the house. Later in the evening, she was very emotional and told us the reason she cries is not because someone is leaving but because she doesn't want to die. When she talks about death, it breaks my heart into pieces but I have to hold it all back. I want her to live everyday in happiness, that is why I am here. Do I blame her to think that way? Absolutely not. I can't imagine the pain she has gone through going through breast cancer and immediately being diagnosed with ALS after chemo treatments. I don't know if I mentioned but she has lived with RA (rheumatoid arthritis) most of her life. Now she has to live with the pain of RA and the painful progressive disease ALS.

I think the hardest part about all of this is that I have a front row seat. When I lived in New Jersey, I was away from it. I was in the nose bleed section asking others what was happening. Now that I am here, I see and hear everything my mom is going through. It is much harder than I imagined. I am here though, and I wouldn't change it for the world.

 

 

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.