ALS: A video legacy
This is a story of amyotrophic lateral sclerosis, known as ALS or sometimes MND, and how researchers and people with this terminal disease leave a legacy for future generations. I was seven years old. So, my dad got diagnosed in ’97. He was in a wheelchair for quite a while before his voice started to really go and then he started to use a lightwriter to communicate after that so I don't really remember… I don't have a memory of him communicating and talking to me kind of in the flesh which is strange. MND or ALS is the progressive degeneration of the motor neurones. There's a lot of variability in the age of onset. There's a variability in the site of onset so it might start with a weakness in the hand or in the leg and with difficulty swallowing or speaking. There are kind of like gradual losses, so initially there are losses with walking or your hands or your speech, so you gradually have time to get used to those things, but like with most things you don't miss it until it's really gone and, yeah, we didn't think about recording his voice because it wasn't even thought about at that time.
[Phone ringing] We are currently unable to answer your call at the moment but if you’d like to leave your name and telephone number after the tone, we’ll return your call as soon as possible. And there's probably a three-second gap where he's breathing into it, trying to figure out which button to press to save it and that's the end of it, yeah. My first memory of it being really important to me was coming home from school and dad was in the hospice by this point. Somebody had just phoned the house and so I just caught the tail end of the answer phone message of him. I figured out that you could press a button on it and it would replay this message so, yeah, I would just listen to that quite a number of times repeatedly, just to hear his voice because it was a way to remember what he used to sound like. And obviously once he did die, again, it was really important for me as well to keep hearing his voice. In the terms of my research is I've wanted to try and understand what's been going wrong in the motor neurons. There's multiple different reasons why they may be dying.
If you imagine a motor neuron, the cell body can actually be in the base of your spine and the length of the axon goes all the way down your leg and may be controlling the muscle that moves your big toe. So that's an enormous cell when we actually think of cells normally as being sort of microscopic. So it just goes to show how challenging these neurological diseases are. When I started doing the PhD here I knew I wanted to do something that was going to help young people that have been in a similar situation to me so I started to think about what had helped me. The research is about people recording a video legacy so that it could be purposely given to a child, a young person, in the family to use in the future. So it means that once they've gone the child or young person has a way to kind of replay a message in video form, to remember the person that's passed away.
So it's kind of revolutionary for them as it was for me to kind of look back and see the person or hear the person as they once were. This is Dean… Dean Richard Mucklow. One thing I always say to you two is I love you, because I really do.
Dean was diagnosed in May 2013 and uses a legacy video app called ‘record me now’ to leave messages for his friends, family and young children. I was scared walking down the aisle to marry your mom, but again, I was scared but it was the best thing I ever did. I was scared to have children. As soon as you have children you never stop being scared or worried.
Scared makes you alive so embrace it, use it. Never let it stop you because the most successful people in life have been scared but they overcome it. One of the things I was drawn to actually was the challenges and there's a lot of challenges for people with MND. Not only have you got the challenges of making sure that you're ready to think about the fact you're going to die and accept that and think to yourself that you want to create this digital legacy, it's really quite a short window where people are physically able to do it because they've still got their voice and perhaps use technology. But they may not be kind of mentally ready to get into that place yet… to actually get down and start the ball rolling and start doing it.
It's really hard. You're having to think about the messages that you want your child to know in the future because you're not going to be able to say it. You're having to think about who you're communicating to because your knowledge is your child at a young age but it might be that the video that you're recording is for them when they're a lot older, getting married or something, so you're having to think about what that person might be like in the future. The patient population is so supportive in participating in the trials. They are continually aware that they may be giving samples that ultimately may not be… the findings will not be of benefit to them but they may be of benefit to the next generation. Yes there's quite a sense of achievement that people have been able to create something in a time when they aren't able to do a lot of things they used to be able to do.
It's quite a gift for the young person. The speciality I had was touching my nose with my tongue. Can you do that? I think not.
How special am I? A lot of times, when people are on camera people want to be a polished version of themselves and that's not what people, young people especially, want to see. They want to see the real person. I remember a time where I was trying to go further along in the tape. I remember he had problems in recording the message so I was hoping I would be able to hear him swear or something like that, just to hear that aspect of my dad. It's not just about creating a purposeful legacy – it's just about having some sort of legacy in general I think.
This has been the hardest thing I've ever done in my life… trying to find the right words. I want to thank each and every person that has ever helped or supported us during this time and I just want to say I love you all. Take care and keep smiling.
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