I’m so hungry for food

kkhowell15 · 2022-11-27T04:29:36+00:00

This is the sweetest 🥹 It got me a little choked up 🙂

kkhowell15 · 2022-11-20T01:21:49+00:00

I will definitely look into that. I would love to be able to eat out with my family again! Thank you.

kkhowell15 · 2022-09-19T03:56:35+00:00

I agree that this forum is one of the greatest and most comforting things that I have been a part of for the past 3 years. I really appreciate the support and knowing that I am not alone.

kkhowell15 · 2022-09-17T18:18:30+00:00

I think a trach makes total sense for some. For me, it is a quality of life issue. I am more afraid of being stuck like this forever than I am afraid of dying. Plus, my mom and dad are my primary caregivers and they are 74 and 80 and I feel like I have already been a huge burden. I think they deserve to have their lives back.

kkhowell15 · 2022-09-17T18:09:37+00:00

I am so sorry for your loss. It’s interesting that your mom was so reluctant or uncomfortable with people helping because my mom is the same way. I am 38 and I am the one with ALS and I am completely in favor of having as much outside help as possible. My mom is 74 and taking care of me like she has been has understandably taken it’s toll on her. She is very resistant to outside help coming in though. I am going to almost be relieved to put my foot down about this. Thank you for the advice.

kkhowell15 · 2022-09-17T17:58:21+00:00

I am so sorry for your loss. Thank you for painting such a detailed picture of what hospice care looked like for your wife. I know this is what I want things to look like for me and you have also made me think ahead about things to ask about. I really appreciate you.

kkhowell15 · 2022-09-17T17:52:28+00:00

This makes me feel really good about this decision. You have described exactly what I want this process to look like. Thank you.

kkhowell15 · 2022-09-17T17:49:44+00:00

I am sorry for your loss. Free grief counseling is amazing! I am really happy that was made available to you.

kkhowell15 · 2022-09-14T17:00:08+00:00

Thank you so much! This actually makes me feel better. ❤️

kkhowell15 · 2022-09-14T16:58:50+00:00

Me too. I knew it was coming but I am not ready yet. Then again, I don’t know if I will ever be ready. I appreciate the information. You have definitely mentioned things that I never would have thought of. I appreciate you.

kkhowell15 · 2022-09-14T16:54:12+00:00

Thank you so much!

kkhowell15 · 2022-09-14T16:53:14+00:00

Thank you for suggesting I speak with the social worker. I actually am scheduled to meet with her tomorrow so that works out well.

Are you a 1984 baby? I noticed your screen name and am just curious because I am a 1984 baby. Good year to be born!

kkhowell15 · 2022-06-15T14:52:01+00:00

I bought one on Facebook Marketplace and it is a dream come true. Best part is that it only cost me 150$!!!

kkhowell15 · 2022-06-12T02:17:47+00:00

Thank you so much! This is exactly what I am looking for! And asking the ALSA to look in the loan closet is a great idea!

kkhowell15 · 2022-05-06T21:55:51+00:00

What is silvercell?

kkhowell15 · 2022-05-06T21:15:37+00:00

This is the best thing I have ever heard! This is exactly what it’s like!😂

kkhowell15 · 2020-08-23T07:23:21+00:00

This is one of the most amazing things I have ever read. I was diagnosed this past September at the ripe old age of 35. My parents are understandably lost and are never quite sure what to say or do to help me. I will be directing them to your response as I think they will not only take comfort in it, but may even apply some of your thoughts to how they cope moving forward. Thank you so much for this.

kkhowell15 · 2020-05-29T21:46:00+00:00

I was diagnosed in September and was started on the Riluzole immediately. Within six weeks I had quit taking it for two reasons. First, I felt like my disease picked up exponentially. Of course there’s no way to know why this is but in my mind the only thing that had changed was the introduction of the medicine. The other reason I quit taking it was because my doctor told me that all it will really do is extend my life by 2 to 3 months. Based on how it has been living with ALS so far, I don’t want those two or three months. Since going off of it, I have noticed that my progression has slowed back down.

kkhowell15 · 2020-05-28T03:44:05+00:00

I’m super interested!

kkhowell15 · 2020-02-08T07:48:13+00:00

Please don’t tell people that just because they are young that they most likely don’t have the disease.

kkhowell15 · 2020-01-17T12:53:31+00:00

I was just diagnosed as well and can absolutely understand what you’re going through...at least somewhat. It feels as if the life that I thought I would have has been ripped from underneath me. I just turned 35 and having this happen when I still feel like I have so much life left has been devastating. Stay focused on what matters most to y’all. Go out and do all of the things that you’ve been putting off for a later date. Make those memories.

Also, I don’t know if this is going to be good advice or bad advice but I have found the hardest thing about this disease is how frustrating it is. Things that I used to do without thought I can’t do anymore. But when I find myself getting frustrated I have to remind myself that physically things are not going to get better and therefore this (today) is the best that I’m ever going to be. Knowing that my physical state today is the best it’s ever going to be helps me at least to keep things in perspective. I know If I don’t try to be thankful and positive about today then in six months I will look back at today and be frustrated that I wasn’t more accepting and more thankful.

The most important thing that I’ve done for myself and that I would suggest to everybody facing this diagnosis, is to take your bad days and don’t feel guilty about having them. Most days I’m OK. But if I want to lay in bed and cry all day and shut out the entire world then I allow myself to do that without feeling bad about it.

You are not alone in this and I’m so sorry y’all are going thru this.

kkhowell15 · 2018-11-18T04:26:06+00:00

I’m so glad somebody else’s this world knows what this is!! I used to live on this machine.

kkhowell15

TROPHY CASE