November 1st

Hi everyone, this is Mariel, Leanne's oldest daughter. We have decided to start a blog for her, and we will be posting updates on her health, her health care, etc. We always have so many people asking "How is your mom? What is new? What are her symptoms?" It is hard to keep everyone updated, and it is hard for my mom to talk on the phone. She loves talking and visiting with people! Her voice just doesn't last very long. So we thought having this blog, with everything being posted in one place, would be great to keep everyone updated. I will try to post a couple times a week.

**This first post will be long, since it is kind of an introduction as well, so bear with me!**

QUICK INTRO: My mom is 57 and was diagnosed with ALS or Lou Gerigs disease back in June of this year (2018). She got into a car accident last December 2017, and noticed some numbness in her left arm, which doctors thought was whip last and nerve damage from the crash. After the left arm getting worse and worse, she sought more help and answers. After several tests, Dr appointments, and then a referral to University of Utah, she received the ALS diagnosis. Ever since, things have declined quite rapidly.

HEALTH:
So much has happened since June, I will try to condense it. In June, she was still able to walk, though it was turning into a shuffle. Her left arm was mostly gone but the right one was still alright, she just had to learn to use it (she is left handed. Switching to right was really hard for her!) In August, her right arm was starting to go, and she was needing a walker to get to the bathroom. In September, we were having to help her stand, transfer her to the walker, push her to the bathroom or shower, transfer her to the toilet, and then all that back to bed. She could sit a little on her own, but not for long. Her right arm was getting worse and worse. She could barely push the buttons on her phone or remote. Her voice was starting to get really slurred. She couldn't hardly hold anything anymore, so she was needing assistance eating.

Now its October, and she has experienced even more decline. She is now permanently in bed and cannot stand for longer than a minute, but needs to be held. She cant move her legs. Her right arm is pretty much gone, and her left arm is paralyzed. Her left shoulder is locked so her arm lays at her side. She cannot hold anything, use a remote or phone, or even wipe something off of her face. Both arms lay at her side. She can barely talk now, and has a hard time forming words. She had a catheter placed this last week so she doesn't have worry about getting her adult briefs (diapers) changed in bed anymore, because when we would need to change them, we needed to roll her side to side, which would cause her immense pain, especially in her arms and shoulders. So, the catheter has made things easier for her. She is in a hospital bed, she has had that for about a month, which has been amazing. We can raise and lower her head and feet, and raise the bed up and down.

Her oxygen is down to 70-80%, so she now has oxygen in the room. She has some other things as well, like a cough assist machine. She is in so much pain, and is experiencing a lot of anxiety, so she is on several medications to help. We have hospice in the home now. Her nurse is so sweet and amazing, and comes about twice a week. A CNA will come about 2-3 times a week to bathe her in bed and help with anything else. She has amazing ward members in the neighborhood that bring meals and come to sit with her while my dad is at work. My dad has rearranged his schedule a ton to be home as much as possible. Evan, #4 child 22 years old, is living at home and is helping her when he is home. Claire, #6 child 16 years old, is in High School and helps when she is home. Myself (#3 child) go down several times a week with my girls and visit and help her. I have past CNA training, so I am glad I am able to use it to help her. Ben #1 child and his wife come with their son often to visit with her. Matt #2 child lives in Alaska with his wife, but has been able to fly down a couple times this year. Jeff #5 child lives in Orem but comes down to visit with her.

Honestly, this next part is pretty difficult to write. Just in the last two weeks, things have declined drastically. She, my dad, her hospice Dr and the nurse have decided to increase her medication to keep her calm, because she is having constant panic attacks. She is also in so much severe pain, so they are trying to keep that under control. That is the purpose of hospice, they are in control of keeping the patient comfortable and calm until the end. She is pretty groggy and sleepy a lot, which they have told us is a symptom of ALS. Your body is shutting down, so you sleep more and more. She doesn't eat very much. She has started to say some nonsensical things, which is another sign.

We were told 1-5 years back in June. We have heard countless stories and experiences from people of their loved ones with ALS, all with varying time lines. This is so much faster than we ever expected, and is extremely difficult.

She cannot talk on the phone or type at all, so if anyone is wanting to contact her, you can email me at marielh.77@gmail.com and I can read it to her.

I will keep posting updates.

This is Leanne back in the beginning of September with one of her grandbabies.

This is Leanne just a couple days ago. She requested that I take the picture to  upload it here on the blog.