Our MND story update

40.

I wrote blog post on the 2nd August about our story so far with my Dad's MND, four months later now I feel maybe it's time for a more in depth update on how things are now.

Again, I stress, what I write are the thoughts purely from my own brain and my point of view. 

Since August Motor Neurone Disease (MND) has been globally recognised with the Ice Bucket Challenge. The reason behind throwing a bucket of ice water over yourself was to experience the numbness MND/ALS warriors feel everyday and it has raised such an unbelievable amount of money, more than I think anyone expected. Lets hope it continues to be recognised and understood.

In these last four months things have changed, he is no longer the version of himself that he was back in August. For a while it felt that things had kinda stayed the same. It seemed that his Dementia was getting increasingly worse and his MND was taking a step back. He would spend each day walking around the town, for no real reason, he just wanted to spend as much time out and about than inside the home because he hadn't really settled into it yet. This worried all of us because he was vulnerable by himself. 

He had some bad choking episodes, one of which I was there for and it was terrifying. They are scary for him, scary to the point he would refuse to eat or drink whatever it was he thought he was choking on when it was his own saliva that was causing him to cough so badly. I just can't imagine how that must feel. 

In more recent times the MND has creeped back into the forefront. He is unable to open heavy doors including car doors. Falls up the stairs have now caused him to use the lift to his bedroom. His Dementia means he now has 1:1 care for 3 hours 5 days a week. His tiredness means he no longer leaves the home unless with someone else. The lack of strength and balance led to a 5 hour stay in A&E. His difficulty with eating has led to him not being allowed to eat solids any more. And the most recent development is that he has become increasingly difficult to understand :( 

The FTD before made sentences a bit mixed up but now the sentences he tries to say don't come out, they are mostly random words that we have to try and piece together in some way. So adding that with the MND making his voice very slurred has become so sad and heartbreaking. In my heart I have always hoped he will keep the ability to speak, I still hold hope but the realisation is hard to face. 

It breaks me each time he cries, the fear he has is so visible when he shows those emotions and I wish we could take that away from him, I don't want him being scared. 

BUT although things have gotten worse and although emotions have been all over the place, he still laughs and smiles, giant beaming smiles that are fantastic! Only yesterday (Sunday) we went to feed the ducks and I've never seen a reaction like it before, every time he dropped the duck food on the floor he burst out laughing and had the best smile on his face. Those are the moments and memories that no horrible disease can take away.    

I think for anyone going through difficult and emotional situations, I think we can get lost in the sadness and become weighed down by guilt or regret when we shouldn't. We must cherish all the smiles, all the laughter because those are the things we need to remember, those are the things that keep us strong. 

Life is a painful thing but that pain is so beautiful. 

Much love
Beth xx