Living with MND
No matter how prepared you think you are in dealing with this illness, different scenarios come along and whack you firmly in the jaw. I honestly do not know how hundreds of people around the UK are coping with this disease and in turn how those acting as carers cope either. It is by far and away the hardest thing I have ever had to do. Despite dealing with it the best we can there is still an overwhelming feeling of failure when I see Dad distressed, yelping in pain or in tears of frustration and embarrassment.
How do you manage a scenario where an MND sufferer has an upset tummy, is all but paralysed and wakes up at 3am needing urgent assistance? I can guarantee we aren’t the only ones going through this. But I come back to what I mentioned above. Despite doing our best, accidents happen and this is where that dreading sense of failure sets in and is hard to get over. It’s devastating, frustrating and sad for me to go through, now imagine what Dad feels like. The proudest man you’ll ever meet, would do anything for anyone and would never ask for help. We’re talking about a man that worked 15 hour days for 40 years. Someone who regularly drove 400+miles a day, whilst unloading trucks and managing truck repairs in all weather conditions. I can’t even begin to imagine how he feels and what goes through his head. Not only is he dying but the disease is hurting his pride and his dignity.
Dad is all but paralysed now. He is unable to work his chair, unable to eat and drink unassisted and can only stand up with assistance. One piece of equipment has been a revelation the past couple of weeks, a turntable. Something we can stand Dad on and swivel him around. It has made the transfer process so easy and straightforward. For those that don’t know, Dad is a big chap. Even now, he is still circa 110KG. As such, all of the lifting is left to me, this means all hour wake up calls to assist when required. This isn’t me moaning by the way, I’m just highlighting how difficult this illness is for everyone involved.
I can’t see these scenarios becoming any easier. I just hope that Dad can be as comfortable as can be. Myself, Mum and Sam will keep doing whatever we can to maintain Dad’s quality of life. That’s all we can do until the inevitable.
There have been some positives, starting with managing to get Dad to a Wycombe Wanderers game. Roger Mott, a good family friend, worked his magic and was able to get us along with him to the game vs Bristol City. Wycombe won 2–1 with the club talisman, Adebayo Akinfenwa, scoring a last minute winner. Such an incredible night, Dad loved it. I’ve included a photo below of myself, Dad and Sam from that night. You may note we are wearing ‘Kyse’ branded clothing. A clothing range coming soon with an amount from every sale going to the MND Association. Updates to follow shortly.
We have my sisters wedding towards the end of May. It can’t come soon enough to be honest. To have Dad there will be amazing and it’s something we are all looking forward to. I’m sure it’ll be a very emotional but memorable day.
As the weeks pass by we are getting closer to some normality which, we hope, will result in a huge family gathering. To be able to get all the family together will be amazing and give everyone a chance to see Dad properly and reminisce.
That’s all I have to say this week. I hope everyone is okay and a massive thank you again to all who donated via my Dad’s JustGiving page, it really is appreciated.
