Happy Thanksgiving!

Happy Thanksgiving !

I am thankful for being able to spend the holidays with my mom this year.

I know I promised to post about that article but I had a long day today. I will post that tomorrow! Stay tuned.

Best,

Ashley

Calories, Calories, Calories!

Today my mom had a visit from her speech therapist at the house. She is fantastic! She is truly concerned about my mom and that is what really impressed me the most. She treats my mom like a friend rather than just treating her like a patient. Mom is down to 120 lbs now and the doctor is concerned with her calorie intake. She needs to boost her calorie intake to at least 1500 to maintain her weight. We would like to have her gain a little weight incase she gets sick and can't eat for a few days, she will have some extra weight on her. To gain weight, she will have to take in at least 1800 calories which would be hard to do at first. My plan is to start off slow with her, at least reach 1500 and work our way up. In addition, the doctor suggested we purchase Benecalorie by nestle. It is a small shot of liquid to add to protein shakes or pureed meals which adds 330 calories! Furthermore, I started a calorie tracker for her to make sure she is actually taking in the correct amount of calories.

If you know anyone or live with ALS and have any other tips on how to boost caloric intake, please comment below this post!

Stay tuned! My next post will be later this evening about an article I found on ALS!

"Are you afraid to die?"

So I think you know where this post is heading. My mom had another death conversation with me. These are never easy. It is tough to spin these into the other direction. Basically, she finally came to the conclusion that no matter who you are, if you have ALS or not, you are living til you die. I explained to her that she needs to keep LIVING and quit worrying about dying. There are so many everyday people in the world who look at life as if you just live to die. We live to live a happy life and enjoy the time we have here. This is how I want my mom to start viewing life. Lets face it, ALS patients have a shortened life and of course, now and again they will wonder how long they have. I don't blame them to have those days but I will start to get concerned if my mom starts to think this way more than usual.

Much Support; Lack of Awareness

MUCH SUPPORT

I always looked at support groups as a joke until I attended one for ALS with my mom and her boyfriend. This was my moms first time as well, so I am very happy I got to go with her.

All this time the media has altered my perception of a support group. What I expected to see were emotional patients that are put on the spot to talk about how awful they feel and how sad they are. What I experienced were happy, vibrant people who look at being diagnosed with ALS as  LIVING with ALS. Just because someone has a terminal illness doesn't stop that from living everyday. Sure there are obstacles that are thrown at them but they still get through everyday they have.

I won't go into the inspiring people I met because privacy is a concern but WOW comes to mind. It was great to meet people who are facing the same difficulties as my mom and to meet their caregivers, friends, and family. One person in the group has bulbar like my mom so it is easy to relate to their progression. The group is like a family. They crack jokes with one another like a bunch of comedians. More importantly, they made my mom, her boyfriend, and I feel welcomed into the group.


LACK OF AWARENESS

I can't get over the amount of health professionals and people in the world that have NO idea what ALS is. It is almost like people avoid it because of how ugly of a disease it is and that is why awareness is not spread like breast cancer awareness is. For example, did you know May is ALS awareness month? Most likely you didn't but EVERYONE sponsors and knows about October being breast cancer awareness month. It is unexplainable to me.

When I mention how many health professionals are unaware, let me show you how unaware. My mom is supplied with letters such as this.

 

 

 

This is a letter that is made to give to medical personnel and medical professionals working in an emergency room setting. This is how UNAWARE people really are. 

 

My ultimate goal is to spread awareness and hope those people who are made aware share their knowledge with others. Spreading awareness opens doors for more treatments, more studies, more knowledge about ALS, and hopefully all of that will one day lead to a cure.

 

I hope that you find time to raise awareness. You can do so easily by visiting your local ALS association page. They will have walks, bike races, and other awareness events to help support ALS. Purchase an awareness bracelet at one of the events or through your local ALS association and watch the questions come through. Every little thing helps raise awareness.

 

 

My good friend Mandi wearing her awareness bracelet.

 

 

 

 

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.