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.

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.