I mentioned on Monday that I have so much to tell you about, but I guess I’m a flighty person, because a campaign I saw on Facebook caught my eye, and I want to talk about it.
The MND Association are shining a spotlight on AVs – Association Visitors. They are amazing volunteers who provide regular support for people and families affected by motor neurone disease. This can range from a phone call to face-to-face visits.
Not only do they provide emotional support, but they can also provide practical assistance by being a personal point of contact with the MND Association. Although they don’t overly help with the day-to-day care, they can help identify what care is needed, what support is available and how to get access to it – saving the families the time and stress of trying to find it themselves.
Only 1 in 5 people living with MND have an Association Visitor. As far as I’m aware, my mum is in the 80%.
Please don’t interpret that as me saying Mum doesn’t have access to support. We have called MND Connect (the free helpline – 0808 802 6262) on a few occasions, and the specialist nurses at the Leeds General Infirmary contact her regularly. We feel very lucky in that respect. When the doctors don’t seem to understand, the nurses always have our back. When it comes to the MNDA, I am my family’s chief researcher – it’s one way I can help when I am so far away.
Still, especially in the first few days and weeks, it would have been nice to be able to talk to an actual person, someone who really understands. Someone who can give you advice, can talk things over with you, provide a semblance of comfort. Someone who can explain what life with MND is like, not just the medical side of what your future is about to become.
I am seeing this from my perspective as a carer, knowing that an AV would have helped me feel slightly more prepared and less overwhelmed. I cannot speak for someone living with MND, but the online testimonies and my imagination lead me to believe that AVs provide a crucial service – a friend and a guide. A silver lining.
I hope to become an AV myself one day. Right now, I know I cannot commit the 2-4 hours per week that the MND Association recommends. My primary concern is my mum.
I know as well that I’m probably not in the right place right now to be an AV. Sometimes I still find it hard, talking to people with MND. People who are more advanced than my mum frighten me in a way, because it’s like looking into the future. Sometimes – and I hate feeling this way, I know it isn’t fair, but I can’t help it – sometimes I feel resentment towards people who are less advanced but have had MND for longer. That probably makes me sound like such an awful person. I know everyone on this journey suffers, and my heart genuinely breaks for every person I meet. I just can’t help that tiny stab of jealousy. So, no, I’m not yet in the right place to be able to provide that kind of support. And I’m sorry.
But there are people out there who are ready. There are people who are providing this aid to make the lives of people with MND – and their families – a little bit better, a little bit easier.
Like all things, though, it costs. AVs have to be trained, equipment has to be purchased, research continues to be crucial. AVs are volunteers, but their expenses are reimbursed – meaning their own financial position never stops them from getting to the people who need them.
Although I am not ready to be an AV, a donation of £10 can go towards helping train someone who is. So please be a part of the AV Appeal. Visit the MNDA’s website, and be part of this crucial support network.
To learn more about Association Visitors, you can hear all about them in this short video.