Tag Archives: Children of ALS

ALS research study on support for children and young people affected by ALS.

Guest Blog by Oliver Clabburn

ALS is a disease that not only affects the person diagnosed, but also those that are around. For this reason, it is often called a ‘family disease’ as it impacts upon the whole household. This means that many children and young people will unknowingly fall into a caring role and will begin to help with duties that are not often associated with ‘normal childhood’.

 My family and ALS

I was 7 when my Dad was diagnosed with the disease and I remember being confused as to why things at home were changing. Initially things seemed great. Dad had to stop working because his speech became too slurred, but this meant he would be at home to help with homework when I got back from school each day!

 This didn’t last long though as the disease progressed and his physical body began to slowly deteriorate. Soon enough, the routine of how to pick him up became second nature as falls around the house became more and more frequent. Things gradually got worse and I had to start helping with things like feeding, medication and toileting. Yet, it all seemed normal to a ten-year old and I assumed that all kids do this, right?

 For the final period of his life, my Dad moved into a local hospice and received the most incredible care that he, and my family deserved. Yet with all of the best care in the world, ALS will always win and he eventually lost his battle in 2004. It was at this stage that things started to become ‘real’ to me and the challenges of dealing with bereavement kicked in.

Current Day

Fast forward to the current day and I’m carrying out a PhD in the UK. My area of research is children and young people who provide care for family members with ALS, and also, young people who are bereaved due to the disease.

 When I started my doctorate, I began to investigate different ways of supporting young people affected by the disease. I began to think about my experience and what I found supportive whilst I helped to care and later grieve. People often talk about the power of photographs when remembering people who have died. Unfortunately, my Dad was a keen photographer which meant that there were very few photos with him in them as he always took them! There was however, the answer-phone recording which I would listen to over and over when I was home alone. Sometimes I wouldn’t even listen to the words, and instead, I would hear the individual letters or the tone of his voice and try to imagine what he would sound like saying other things and ‘talking’ to me. Upon reflection, this was my way of reconnecting with him and gradually processing the idea that he had gone. More importantly, it was something I could do by myself and at my pace by pressing the play button on the answering-machine.

I wanted my PhD research to investigate ways of supporting young people who provide care or are bereaved due to ALS. I soon found myself reading up about ‘digital legacies’. A digital legacy is the various things that people create digitally or online which often remain in existence when someone has died. For example, a person’s email or Facebook account which is full of their photographs, messages and memories. This made me think of Dad’s answer phone message and how this was an early type of digital legacy with his voice being stored in a type of digital existence, and more importantly, how this helped and supported me when he had died.

It got me thinking that with the advances in technology, young carers or bereaved young people would not have to settle for a short answerphone message, and that there could be something better out there.

 My Study

My doctoral research is exploring purposefully recorded digital legacies as a means of support for children and young people affected by ALS. People with the disease record a series of videos about their life, memories, accomplishments and messages specifically for a child in their family. The videos are then exported to a DVD or cloud source which is given to the child to use whenever he/she wishes to reconnect and remember. I am going to focus particularly on people’s experiences of creating and using a digital legacy and I am now recruiting participants!

I am hoping to interview around 10 people from the following three groups from now until April 2017:

  1. People with ALS who are recording/have already recorded a digital legacy for a child or young person in their family.
  1. Young people (aged 11-24) who are currently caring for a family member with ALS and use a pre-recorded digital legacy as a means of support.
  1. Young people (aged 11-24) who are bereaved due to losing a family member who had ALS and are using a pre-recorded digital legacy to support them whilst they grieve.

The interview will take place either face-to-face or through Skype, depending on location and preference of those taking part. The interview will last about 30 minutes and will be audio recorded.

If you, or someone you know would like to find out more about my study, or, how to create a video based digital legacy, please visit my research page www.facebook.com/mndlegacy

Guest Blog by Jodi O’Donnell – Ames, founder of the charity Hope Loves Company (HLC).

HLC is the only non-profit organization in the US dedicated to supporting children with a parent or grandparent with ALS. Jodi shared an excerpt from the charity’s upcoming book, “Someone I Love Has ALS, A Family Caregiver’s Guide” edited by Jodi O’Donnell-Ames.

The book will be available next month on Amazon.

Continue reading Guest Blog by Jodi O’Donnell – Ames, founder of the charity Hope Loves Company (HLC).