David Seymour is living with MND and reflects on the vital role of his family and impacts on them.
My family and I have been grappling with the devastation caused by the beast that is MND, for the past three and a half years.
For the first six months after receiving the diagnosis of MND, we carried on much the same as normal. Of course, we did do a bit of planning in anticipation of the changes that would eventually arrive. Contemplating the future was scary, but fine.
The gradual changes impacted not just me, but everyone in my immediate family. When walking by myself was no longer a safe option, we made a walking stick to combat this. Although this seemed like a small change, my family had to adapt, remembering to walk slower as I could no longer keep up.
As my mobility reduced further, we all had to adapt once again, this time incorporating a walking frame into the mix. Ensuring the frame was put into the car for outings and understanding the intricacies of correctly folding it were learning curves we all had to master.
The need for a helping hand soon become a regular occurrence, and once again my family had to keep this top of mind when out and about with me.
Sometimes it is frustrating and almost ludicrous that I need so much help, as I have always been fiercely independent. I now need assistance with things like standing up and getting in and out of the car, things I used to do without a thought. At times it is can be embarrassing for all of us.
When the time came to start using a wheelchair, this was another huge challenge for everyone. Firstly, figuring out how to best fit the chair into our car, and then making sure all components are in the car and not left behind, and then making sure they are reconnected correctly before helping me into it.
Dare I say it there were some frustrating experiences in the beginning as we all got used to our new family member- the wheelchair. One day, as we were entering a restaurant, I looked down to see one wheel was not clicked in to place correctly and was just about to pop out! Luckily it stayed in place just long enough for it to be pushed back in place before any harm was done!
These days things are even more tedious, as I need help with many everyday tasks, like dressing, getting into bed, showering opening drinks, and most things to some degree. It is now a plain and simple fact that the beast named MND has taken a serious hold on me.
So you see, this difficult and confusing journey is not just about me and what I’ve got to go through but about us as a family. Like it or not, we are all living with MND.
The stress of coping with this disease affects my wife and kids every day in ways outsiders just don’t see. Having to witness my struggles and deterioration every day is certainly just as hard and sad for my family as it is for me.
Outsiders like, friends, acquaintances, co-workers and even extended family need to remember to not just ask how I am doing, but check-in with my family to make sure they are coping and have the support they need too. Maybe they need to have a break, some time out too, so think about how can they be helped as well.
So next time you see your friend or family member with MND or any other serious illness, please spare a thought for those around them who have to witness and help the ill person all the time. Please ask them how they are, hug them and let them know they can ask for help without feeling guilty in doing so. After all, we are all on this journey together. It’s not just me.
Hang in there,