u/Objective_Sir9791

So today when me and my dad were talking with my mum, and she was saying no for something, her head movement was a bit unusual. Like how someone would give a single nod from left to right for a No. she did that for 10-15 seconds straight. We noticed it for the first time and found it very unusual since she has never done this before. This happened twice today. When even when the conversation ended, she kept moving her head from left to right for a few seconds. We stopped it by hand both the times. On asking if she was doing that or involuntarily, she didn’t say anything. Is this something that ALS patients go through or something different?

I am a complete beginner in crypto – if anyone here is a self-taught trader and has been a trading for a few years now, what are the first few things that a beginner should make sure they know before they start? Like if you were teaching someone trading – what step-by-step chronology or 'chapter' would you teach someone? How to judge the market on when to invest and when to withdraw? Is it a good time to trade now for long term? Thanks !

My mum was diagnosed with ALS and started her symptoms in feb 2024. In the beginning it was slow-progressing, as the doctors said, but over the past two years I think it progressed quite fast even without us realising. Currently, she is not able to walk or do anything independently, and her speech is 70-80% slurred, so she sometimes refuses to speak because people are not able to understand. As family members we are still able to understand basic things because we talk to her everyday, but outsiders won't understand anything. Initially it was only her arms that were affected, but then she fell twice due to weak muscles and injured her back both the times, which made her wheelchair-bound. She sometimes faces breathing difficulties, especially if there is a strong scent around her and when lying down or trying to sleep, especially during the night. She is trying very hard to not be on oxygen machines.

In regard to swallowing, she frequently coughs on food and water and even on saliva when she is not eating or drinking anything. I don't know how bad this is or if it's the peak time to get her on a feeding tube. She has lost weight and is on other medications for diabetes, thyroid, and blood pressure. She sometimes eats very little, and her appetite has reduced significantly. But she is still trying to chew as much as she can and not try to get a feeding tube. The last time we visited a doctor, he did suggest starting to think about a feeding tube, but my mum was hesitant, so she refused. She had a lung infection a year ago due to aspiration, but after recent checkups, thankfully, there was no sign of aspiration.

Could anyone please suggest if this is a good time to put her on a feeding tube and oxygen support. The doctors said that we should start thinking about it because if not now, we will have to at some point, and she needs to get used to it as well. But my mum is hesitant of doing these, because I think she thinks that it will make her weaker and more dependent.

I am not sure what to expect in the coming months. The disease has taken a lot from me and my family. I never realised that life was this fragile and thought, 'What could go wrong?' Never thought that I would watch someone this close to me suffer, and I can't do anything about it. Every day is different; some days she is doing good mentally and talking and laughing, other days she is crying and upset because of everything. My dad and I try our best to make her laugh and crack the most ridiculous jokes, sing for her or do some childish stupid dance, for which she laughs sometimes and then suddenly starts crying. Most of the nights I am crying because I can't imagine my life without her. The first year of her diagnosis, I kept crying all night, every day because I couldn't process it. I probably still can't. There is this heavy knot in my throat and teary eyes, everytime I think about it.

My relationship with my mother is funny. Like we can't live without each other, we also can't live with each other. We are so attached that if we haven't talked to each other for a couple of days, we both get anxious. But whenever we live with each other, we sometimes fight because of our contrasting ideologies and behaviours. Which makes this entire situation even more 'funny', because we are not able to express that how much we love each other and that I would have given all my life to her if that were an option. I sometimes still hope she opens up to me and is not rigid, but that will be something none of us can talk about without getting emotional. She is already thinking that her time has come and that she doesn't have much time left.

As a kid when I was severely ill, she stayed up several nights to make sure that I was okay. And it makes me angry and upset and feel unfair that when she is in so much pain, I can't do anything for her. People looking from afar sometimes might not understand how each day goes. It breaks my heart to see her scared every day as the disease is slowly taking the life out of a strong, independent, kind woman. I was hoping that things didn't have to be like this and that it might be just a misdiagnosis or there is a new reversible cure to this and that life was more kind to her. It's weird how I always wanted to be a neuroscientist, only to see my closest person suffering from a neuronal disorder.

I think I have vented way too much. Thank you for listening if anyone is actually reading all of this.

It would be really helpful if someone could suggest things to me regarding feeding tube and oxygen support.

Thank you so much!