Hello! I'm Kalvin and I'm an Australian guy in his mid-20s with a condition called FSHD. It is a form of muscular dystrophy which affects various parts of my body, limiting my mobility. I was diagnosed as a 14-year old and have only recently accepted it as part of my life.
I will be documenting my journey living with a progressive disability, whatever that may entail. Expect to see a whole lot of disability-related advice, updates on how I'm dealing with things, activities I pursue and a whole lot more.
My goal with this channel is to hopefully inspire people with disabilities to go out there and give things a crack. I aim to spread some awareness about muscular dystrophy and build a community of people to ensure that no one feels like they're fighting this on their own.
Impeccable knife skills. My right (dominant) hand/arm is getting really weak so I should really teach myself how to chop with my left. Perhaps I will document that for my channel!
I found your channel from an FSHD Global newsletter. I've been following them since 2012. I thought about getting on RU-vid like you have but I couldn't ever take that step. The judgement, trolls and fear of feeling humiliated. So I really value and admire what you're doing. If I could cross that line I would post on multiple platforms. At least 3. X is evolving so might be an opportunity there. I have seen stats that live streams can be great for learning to engage an audience. E.g. "make me laugh". "You're movie moments" etc. Third I saw a video about Linus years ago that learning mentioned learning to project the voice was a big turning point. It might have been corridor or something. I know they have a lot on making the best out of footage. Well thank you for being a voice for me, my family especially my 4 year old daughter. When she's older, having ppl like you will be very important for her confidence and will power.
Thanks Josh, that's really kind. That's really why I do all of this, to try to be the person I wished I could've looked up to when I first got diagnosed. In terms of getting on RU-vid/social media, I'd really just say go for it. I was extremely self-conscious initially when I put parts of myself up online, but those feelings quickly faded away. I'm sure the world would benefit from hearing what you have to say. All the best to you and your family :)
Happy to catch up if you want mate for a coffee as I’m living In Melbourne also. I’m 46 and was diagnosed with FSHD at 13 so know exactly what you’re going through. I too had to give up sports like lacrosse basketball etc and it was devastating. Remain as positive as you can as i know mood does fluctuate. All the best Scott
Thanks for the comment Scott! I'd love to catch up for a coffee, it'd be great to get your perspective on things. If you have Instagram you're welcome to message me there (@dudeability) or alternatively email me at kalvinhopperaus@gmail.com and we can get something going. :)
Kelvin wow there is no words to express the power you have to provide your life story. I hope I can connect with you at some stage over a phone call if possible . Please feel free to reach out! Tony
Hi Tony! Thanks for the kind words, really means a lot. RU-vid doesn't have a messaging feature but if you have instagram we could touch base there? My account is 'dudeability', I'd love to chat! Keen to hear from you :)
Hey Calvin, don’t remember if we’ve ever met but I’m your cousin and I think it’s really cool what your doing, documenting you life from the perspective of someone who is just willing to keep going, really inspiring
Hey Adam! I think the last time I was over you might've been very young so you might not remember me. Thanks a bunch for the kind words, it really means a lot. I hope you're doing well :)
Greetings Kalvin from the US. I was diagnosed last year with FSHD at 62 years old. I spent half my life trying to find answers. I use carbon fiber AFOs to walk with. They have helped me tremendously as far as balance, mobility and overall muscle fatigue. I also started your supplement regiment recently. The Doctors in America are very excited about a couple new drugs for FSHD that are in final stages of clinical trials. Stay positive, stay motivated. I truly believe there is some great treatments that will be out soon for FSHD that will alleviate your fears of growing older. Good luck, I will be watching your adventures.
Hi Bill! Thanks so much for watching. I'm sure it was a relief to finally get an answer as to what you were dealing with after all those years. It's great to hear about your experience with AFOs, I've got an appointment in a couple of weeks to get some of my own. I'm keen to hear more about those treatments as well, it can definitely feel like a bit of a waiting game sometimes. I really appreciate the kind words and support, I hope you're doing well! :)
You're a great advocate Kalvin - I am also really excited to have you in the studio this Wednesday - thank you for the mention. Your perspective and experiences are well worth hearing - and I hope you can make the most of your day in our lovely G'town 😃
Great video! Wheelchair tennis has my respect for sure. Keep up the tennis and youtube grind man you just earned yourself another SUBSCRIBER! Much love 😊
Happy that I found your channel so I can see videos like this that can help me stretching and also other ideas, I just started to take swim classes and going to the gym, I hope it helps me. Thank you.
Thank you Renan, that means a lot! It's great to hear that you've picked up swimming and going to the gym, they're really great things to do. Wishing you the best :)
Thanks for sharing about your journey! It's good to see you are not alone with this - I related a lot. I was also diagnosed at 14/16 and now I am 31. Disclosing to friends and family is not easy, congrats on your courage to create this channel. I'm looking forward to watching more of your videos!
Thanks Nicole! It definitely gets a bit easier when you find people going through the same thing. I really appreciate the kind words and I hope you're doing well :)
quite disappointing that the specialist doesn't give much advice in terms of what people with FSHD can take, thank you for making such an informative video!
It can get a little frustrating but luckily everyone in the community is very open about what has worked (and hasn’t) for them. Thanks for watching Lou :)
One variation of child's pose I like to do is with your knees wide and pointing out to the sides. You can get that back stretch at the same time as your groin/hips. Great if you are sitting a lot throughout the day and your hips tighten up. Although you do already have a stretch for the groin there.
Ooo that sounds really nice, I'll definitely give it a shot next time. I do find the hips tightening up a lot during the day, so I'm always on the hunt for more stretches! Thanks for the suggestion :)
Hi Kal! So, I've been told by people to do some daily stretching but I didn't know how or wich type of stretching I should do, so this really helps and I'm definitely going to try them! Great video
yeah it's something I'm trying to work on at the moment. Just because of the way my dodgy shoulder moves, I'm not able to really accelerate too well with the reverse backhand so I do a weird hybrid version and it seems to work for me for the time being :)
@@dudeability Ah that makes sense! I’m still searching what backhand works best for me. So far it’s been a mix of slicing and reverse back but seems to not get enough drive deep with reverse. Too much top spin. Super proud to see you push content out, I’m enjoying it and hope to see more of your progression!
ay thankyou for the kind words! I definitely feel you with not getting enough depth with the reverse. I think I've just accepted that it'll take some time to wrap my head around. Is there a way I can reach you? I'd love to hear about your journey with wheelchair tennis. If you have Instagram, feel free to shoot me a DM (dudeability) if you're interested :)
