I hate ALS

• an·ger

1. displeasure: a strong feeling of grievance and displeasure
2. become or make greatly annoyed: to become or make somebody extremely annoyed

The definition above is how I have been feeling lately. The more my mom's disease progresses, the more anger takes over my body.

The other evening my mom, Jim, and I were talking and they asked why I haven't written on here and I mentioned why. It's not as easy as I thought it would be. That's the only reason I have to give.

Christmas came and went. Mom didn't feel well enough to eat dinner. She has been on the trilogy a lot (the machine which helps her breathing). She did spend time with us in the morning which was nice. Neighbors came by with cookies as a surprise to my mother which was so nice. Lately, I can hear in her voice that the disease is becoming progressive again. Before I could understand her but lately, not so much. Lucky enough, today we received the eye enabled machine that will allow my mother to communicate with us clearly. I will get a video up by Friday of her using the machine. The man should be coming this week to put it all together. In addition, Jim picked up a bracelet called LifeStrength. It is an ID bracelet for my mother. If she can't communicate, medical personnel can scan the ID badge to find out all my mothers information.

I just want people to realize everyday here gets harder for my mom, Jim and I. Everyday is different. It is emotional in so many ways. Jim and I had a conversation about this earlier this evening. As hard as it is to see my mom going through this, it is a true gift to be the people who get to help her everyday and make it easier for her.

I love you mom!

I want a miracle.

Things have been tough lately. Mom's troubles with swallowing is worsening. Her balance is off and if you hold her hand you can feel the muscles deteriorating. I hate ALS. Now that I am not working, the disease is effecting me. I want to be happy for one whole day, that's all but this disease fills you up with anger and sadness. Now this is coming from a caregiver, not a patient. I can't imagine how my mom feels. I see her tears, I listen to what she says but what she thinks about is beyond me. This morning she showed me a video on her phone of a beautiful sunset on her way home from the Mayo Clinic recently. In the video she heard herself speak and she cried, so hard. It sounded much worst than she does in person I must say but I can imagine how she feels hearing herself. She sounds like a different person. Before I forget, I mentioned how she had to visit the Mayo Clinic. She had issues with her feeding tube so they replaced it and not even two days later she had to go back up because the tube got clogged with her medications. Otherwise, mom has been doing well with eating. Not great but well. I would love to see her consume more.

I apologize I haven't written as much. I thought this would help me but it just upsets me more. I want a cure. I want a miracle.

We need more calories people!

Today mom had a nurse come by in the AM. It's always nice when they come so it gives her time to talk to someone else besides Jim and I. Today I went to the beach for a little. Mom rested. When I got home I made some chicken and brussel sprouts. I was hoping mom would eat but she didn't right away. We put a plate aside for her and I suggested we go into the pool. She did! I was so happy she did. It was nice to see her doing things like that. After the pool we sat in the sauna for a little which is great for pain relief. After all of that, she ate which we get excited for when she does. Jim made mom an appointment for mayo this Thursday. The good thing about the mayo clinic is that they see ALS patients all the time where her primary doctor has never had an ALS patient before my mom. This way she could talk about the pain she has had in her stomach and all the other concerns she is having.

I need help! Everyones big concern is how to get food into my mom. She has been maintaining her weight but we need more calories. The benecalorie can be added to Thrive and yogurts but she doesn't like it. We tried to put it through the feeding tube but it just ruins the bag and doesn't go through. Are there any liquid calorie additives for patients with ALS for feeding tube? Please let me know!

 

Delayed

Hey everyone! I apologize for my delayed post but I am in the last two weeks of school for this semester and I went away over the weekend to visit a friend. Mom is doing okay. She is taking in around 1200 calories now. If only we could get her to eat at the least 1500 calories. Today her social worker (who is awesome!) stopped by with a friend of hers, a priest. Although mom was very tired, it was a nice visit.

I will write more this evening :).

All I want for Christmas...

Twenty-two days until Christmas...

Today I woke up early to become a Floridian, I am official. Before I left for the DMV, mom told me she had an cheese omelet and was eating again (she was taking in her formula from her feeding tube). I wish I could describe to you how excited the three of us (Mom, Jim and I) get when my mom has a good day of nutrition. After she told me about her breakfast she told me she was feeling better, getting up and sitting down without a big problem. That made so happy. She showed me then she dug into a Thrive ice cream. It is made for patients with ALS, packed with calories and nutrients. More importantly, it is dairy free. Dairy causes mucus which is again not good for those living with ALS. She finished the whole thing. After the long wait at the DMV, Jim and I grabbed lunch and brought home mom some lunch. She ate it all!! Keeping up these calories makes me so happy because it shows me that mom isn't giving up, she is fighting harder and harder.

This evening when I came in from the gym I sat with my mom and listened to her. I learn a lot from what she has to say, it helps me understand what is going on in her mind and what I could do to help. We talked about how unexplainable the pain is for her, having RA and having to deal with pain all her life and then throwing on a terminal illness like ALS is not a walk in the park or a walk to the mailbox. It is a tough, rough hike through a natural disaster. She told me that she feels like her youth has been taken from her and how she feels like she lost her independence. I agree. I see that, I feel that for her. She is only 55 years old and can't even go to the grocery store and walk the isles without becoming out of breath. I hate to say this but it makes me really dislike the obese lazy people who decide to use wheel chairs to get around and not live a healthy life when they are given the opportunity to do so, unlike my mom who has an illness that took that from her.

I understand what my mom is saying when she says ALS has taken her youth. The way she walks, talks, eats, sleeps, and even breathes has changed completely, as if she is much older than she is. I will tell you this though, she still looks more youthful than ever and has the sense of humor of a 20-something year-old. Although I wish she could be humorous and happy all the time, she has her moments. Tonight she had one when she told me all of this. She cried as I held back my tears for when I wrote this. Blogging helps me release all the sadness inside of me. It makes me smile knowing I can share this with all of you because I am here with her through all of this. I get to hold her hand through this journey.

Tomorrow, she has the nurse I spoke about a few posts ago coming. She called this evening saying she has a box of benecalorie from mom which I am excited about. I will let you all know how everything goes.


All I want for Christmas is a cure for ALS.

Lately...

So last thing I said was that I would post about an article, I will talk about it at the end. I just wanted to give you an update on what's been going on before we get into that.

Thanksgiving

I can't tell everyone this enough but I am so thankful I got to spend Thanksgiving with mom. It has been a long, long while since I got the chance to spend the holidays with her and I am so grateful I can. It was just us three, Mom, Jim (her boyfriend), and I but boy was it nice. Jim and I cooked everything, I made my first turkey! Everything came out amazing. Mom ate some of everything: turkey, brussel sprouts, two kinds of mashed potatoes, onions, stuffing, cranberry sauce and of course, pie. I was so happy she could enjoy it because I know swallowing has been very difficult for her lately. We sat around together, watched football and just enjoyed one another's company.

 

 

The weekend

My moms appetite has been great. She is taking in a lot more of the feeding tube formula to make sure she is getting all her nutrients. In addition, she started eating yogurt. Tonight, she had ravioli and sausage. Although she is eating better than she was, she still needs to take in even more calories than she is.

Today, mom and I went out to the store. Hardly ever does this happen because she gets out of breath quickly or it is difficult for her to do. I was so proud of her. I am very gentle with her. I keep my pace slow as she holds on to me while we walk. She is still smart with me though and said, "we can go faster you know?" I know this but the last thing I want to do is push my mom and she gets out of breath. Anyways, it was Jim's birthday so we got him a birthday cake and we got her hair dye. Mom hasn't dyed her hair since her hair has grown back from the chemo treatments. I thought she looked beautiful with her naturally salt and pepper short hair but I know and always remember how my mom loves messing with her hair and make up. So if anyone was going to dye her hair for the first time since then, I was the one who was going to do it!


The Article

Here is the link: http://www.algemeiner.com/2012/07/05/orthodox-rabbi-may-be-first-als-patient-cured-by-israeli-drug/

Read about it. It is amazing and I hope that this catches on and pray one day it will be less expensive so all patients can do it.

Comment below.

I'll write again soon.

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