Tianyi's thread

[Tianyi]

Hi, everyone.
I'm new to the forum, not exactly sure where or what to post. Hope you all can forgive me if I say something insensitive in my first post.

My mother was diagnosed with ALS last summer, and my family has been falling apart ever since. I know that I'm holding on better than the rest of them, but my brother is still in 4th grade, my father is overwhelmed with all the medical bills and work. Sometimes I feel like I'm my mom's last straw of hope, the only logically thinking individual left in the family. Everyone else has been driven out by madness. But then I constantly let her down. I don't know what I can do to help, I've tried writing her letters, helping with her exercising, but it's so frustrating seeing that I can't make a change.

I guess this will come out as more of a rant, but scrolling through all the posts, I'm really touched by the sense of community this forum can bring to all those suffering from ALS related reasons. I'm hoping that maybe this will help me find a better way to help my mom. I wish everyone good luck, God bless you all.

 

[JimInVA]

Re: Nuts

Tianyi,

I'm hopeful that the moderators will move your message into its own thread... or into the CALs Roll Call thread... so that you can get the directed attention that I'm certain will prove to be helpful as you travel down this road.

First, you're right... better to post than not to post... even if it might not be in the best place to post. We can't help, either individually or as a community if we don't know what questions you might have. So well done on making that first post. Second... we've all felt that whole scenario of emotions... from tears that won't stop but can't be explained to smiles and laughter that arrives unbidden. We'll take you in whatever mood moves you on any particular day. Third... by posting, we all win. You'll have questions and concerns and we'll have comments, suggestions or additional questions. But by sharing, we'll all share in the attempt to make each day easier to work with.

I'll be back to see what questions you might have when your own thread is created. We have an outstanding moderator group... and I'm sure they'll move your post and mine as appropriate. I'm sorry to have to welcome you here, but am glad that you found us.

My best,

Jim

 

[affected]

Very sorry to welcome you Tianyi.

I'm afraid we all feel the same way as CALS - no matter what we do we can't cure this disease which is what we really want to do. Rant away, you are right - this is a safe place to do that and we will support you however we can.

 

[lgelb]

Welcome, Tianyi, and sorry that you find yourself here. I'm sure you are not letting your mom down -- quite the contrary. No CALS is perfect at that or anything else, and all of us have been frustrated with not being able to fundamentally change the path of the disease. But we can walk the path with our PALS, and it means a great deal. Feel free to post any specifics that we might be able to help with, any time.

Best,
Laurie

 

[Jlynn]

Tianyl, Sorry to welcome you here but welcome none the less. You have come to the right place. I'm sure your family's world has been rocked by this. I remember the feeling so well my heart breaks for you. I'm sure you are not letting your mother down. This is a journey no person should ever have to take but we have no choice. Take things day to day and don't be too hard on yourself. Come here often and we will all encourage you and some have great medical advice to make your Mom more comfortable throughout this journey. Big hug to you.

 

[Narrowminded]

Tianyi welcome to our little slice of heaven on earth. I’m sorry it has to be here, but this place is the best. We all understand you and we are here to help and support you. You will find comments from current CALS, PALS and also past CALS here. Ask away, rant away, whatever your mood. We get it.

Please don’t think you are letting your mom down. We all feel that way at times, but we are all doing out best and our person understands that.

You mentioned your youngest brother is 9. You don’t have to say, but I’m wondering just how old you are to be carrying this load. My son was 19 and my daughter just 12 when my husband was diagnosed. They are now 30 and 23. Both have done amazing with their dad, and both have felt as you do, like they are not doing enough. However pulling together as a family and being honest with each other about our feelings has helped us survive this monster and will continue to do so until our journey through is over.

Sending you huge hugs,

sue