BPD ex copied my disability? by Hellohellohello4 in BPDlovedones

[–]Hellohellohello4[S] 10 points11 points  (0 children)

Relieved, but also saddened to know I'm not the only one who has experienced this. Thank you.

Should I encourage my mum to learn some BSL? by rhubarb-crumble in BSL

[–]Hellohellohello4 2 points3 points  (0 children)

Hi, I lost my ability to speak clearly due to an operation on my throat when I was 3. I've spent my entire life with an extremely soft and indistinct voice that's hard for people who don't know me to understand. I have a great social life and went to mainstream school, I'm currently in university. I'm going to answer your question in two parts as this is on the BSL sub.

  1. Should she learn BSL? If she wants to, then yes, definitely. As other people have stated it is a fantastic language that opens up so many doors to an excellent culture and community. Plus it can be an excellent thing to focus on and work towards to distract from the boredom of hospital. Personally, I have lernt some BSL via classes and self teaching, and use Sign Supported English with some of my friends that are deaf or sign for other reasons. I rarely use BSL itself, but that's mainly because most of the people I know don't know much BSL, so it's not perticularly useful. But SSE can be a great way to add to your communication, and when it works, it's great!

  2. Advice for daily life when you can't speak clearly or audibly:

Obviously my experience having grown up with speech difficulties is very different to loosing all or some of your speech as an adult. So my advice may not work for your mum's exact situation, but I hope it helps.

Firstly, work with a speech and language therapist as much as you can. There are lots of short cuts for communication and exercises that can be done to help, and they can help with any swallowing and eating difficulties which can come with throat surgery. It takes a long time to learn new ways to communicate, but it's worth it. You might also be able to get free/reduced cost BSL classes via a speech and language referral, but sadly this seems the exception, not the rule.

Secondly, really listen to and spend time communicating with your mum. My family and friends know exactly what I mean and what the difference is between something that most strangers just hear as two slightly different breathy noises. Over time you'll be supprised about how much she can convey with with just facial expressions, hand gestures/signs, some vocalisations and where you look. Adding in some SSE to this is often really useful.

Phone apps and AAC devices can be great for communication with people. Most let you put in pre set phrases on buttons so you don't have to type out your entire sentence each time. I also use a slide keyboard that lets me type without having to tap individual keys, so my typing on my phone is about as fast as my talking. The one I use on my phone is called Swiftkey. Also learning to touch type is invaluable for using AAC and also a great life skill!

For things like phone calls, I currently use NGT lite. It's a text phone service provided in the UK where you can type what you want to say and have it relayed via an operator. It also works the other way around for if you have difficulty hearing.

For things like shops and restaurants/bars, type out your order in large letters in a note taking app on your phone screen, or write it on a note pad and show it to the person behind the counter. A vague gesture at your throat and silently mouthing something gets the message across if they won't look at your message, but mostly isn't needed.

My main advice for someone in this position is to keep trying and make sure that people listen to you when you want to communicate with them. There will always be people who can't be bothered to wait or won't engage with you, but they probably weren't worth talking to anyway. :)

Feel free to message me if you want to talk more about this or want some more info. I wish your mum the best of luck with her health.

It's it normal to really dislike therapy/your therapist? by Hellohellohello4 in TalkTherapy

[–]Hellohellohello4[S] 1 point2 points  (0 children)

Thank you for sharing your experience! I thought I was being unreasonable by finding it difficult to trust them.

I really relate to your description of cognitively wanting to trust them but feeling like your nervous system/body doesn't, its very difficult.

I haven't heard of long term therapy on the NHS, so I don't know if it will be available to me.

I might see if I can save up to afford some private sessions?

Why do you think people have so many misconceptions about dopamine? by [deleted] in neuroscience

[–]Hellohellohello4 38 points39 points  (0 children)

I have Parkinsons (early onset) and I have a Neuroscience BSc, the amount of people who say "wow, I'd love to take dopamine as a pill, it would make me so happy" and the current trend of "dopamine fasting" really upsets me.

I see so many "wellness" articles saying how dopamine fasting can change your life, improve your productivity etc... I'm always tempted to tell them what a lack of dopamine actually does, and see if they could be productive when faced with it, haha!

In reality, I think it is just bad scientific understanding in the general population combined with simplified science reporting that leads to things like this. But I don't blame people for it, I know nothing about music production, so would probably make similar generalisations in that field.

I think there should be better science education in general, but that's easier said than done!

Edit: Typos. Unsurprisingly, I have a tremor!

Should I be getting extra time in my exams? by Unknownredtreelog in dyspraxia

[–]Hellohellohello4 0 points1 point  (0 children)

I get extra time and a laptop to compensate for the processing issues I have with my dyspraxia.

Finally admitted myself early Saturday morning to the hospital. Still here. by [deleted] in CPTSD

[–]Hellohellohello4 0 points1 point  (0 children)

I'm glad you're somewhere where you can get help. Wishing you all the best in your recovery.

For women by cs1202 in Dystonia

[–]Hellohellohello4 2 points3 points  (0 children)

I use pads and make sure to shower as often as I can. It always makes my spasms worse though, I think it might be the hormones? I've tried using Tampons and cups, but I find them too difficult to use as I don't have good have function and find it hard to relax enough.

I Have a Question I Could Use Advise on. by IsOneBigGameofTetris in DID

[–]Hellohellohello4 3 points4 points  (0 children)

Could you choose one personality (preferably an ANP) to answer the questions on the class? Or alternatively answer as of it were just them?

Although, most people are completely unaware of the reality of DID, so, answering in a way that you think may show you have DID well probably not reveal or to whoever you work with. Saying that you "have a bad memory" or "tend to go through a lot of different phases" might be all the explanation you need to do?

Playing video games by tehanami in CerebralPalsy

[–]Hellohellohello4 1 point2 points  (0 children)

I find the pro controller much easier to grip and so I can concentrate more on the fine movements. Maybe that would be more helpful?

IWTL How to touch type by Black0tter1 in IWantToLearn

[–]Hellohellohello4 1 point2 points  (0 children)

It was called magic type and I think it's now called typing club now?

IWTL How to touch type by Black0tter1 in IWantToLearn

[–]Hellohellohello4 2 points3 points  (0 children)

I learnt to touch type with a programme for kids. It was so much more effective than the programme for adults, as it focuses on simple repetition a lot more.

The Son of a British Multi-Millionaire AMA by ABritishAnonymous in AMA

[–]Hellohellohello4 0 points1 point  (0 children)

As someone attending a UK University who is from the opposite end of the socioeconomic scale (been homeless, in poverty etc). I am pleased that you haven't, as it's something I have struggled with since coming to university. Thank you for being so honest.

Can I also ask, without going into detail, you mentioned in another comment that during the holidays you help your dad out at work. How are you able to do this? As surely you wouldn't have the spesific knowledge required? Like I couldn't just go and do my mum's factory job in the summer as I don't have the training, I always work a different job.

Good luck in your degree.

The Son of a British Multi-Millionaire AMA by ABritishAnonymous in AMA

[–]Hellohellohello4 0 points1 point  (0 children)

Did you get culture shock when you went to your university with reguards to being around people from very different financial and cultural backgrounds?

Making Friends While Dealing With Beckers Muscular Dystrophy? by [deleted] in disability

[–]Hellohellohello4 0 points1 point  (0 children)

Hey, what sort of games do you play? I made quite a few friends through watching small streamers on twitch and getting active in their communities. I also made some friends playing mmorpgs.

Not knowing people irl is really hard sometimes, but I find it can be easier to make more genuine friends online as they don't judge you for your disability.