Hello! How’s it got to 2020 already? Forgive me readers for it’s been a while since my last confession, I mean blog! May 2019 to be precise but it’s been a busy old time. Kind of like an 80’s Mars bar advert but missing out the important ‘rest’ bit. Lots of work and lots of play but unfortunately no rest!

So, they say a new year brings new hope but it can also bring fresh uncertainty. As a ‘Duchenne parent’ no day is the same and each day can bring a different challenge. Juggling the usual day to day life plus the additional tasks of fitting in hospital appointments, managing required housing adaptations, schooling etc. The list is endless! You think you’ve cleared one hurdle then another one appears. I recently decided to use some rare spare time to catch up on the ‘Office’ side of things at home.

By this I mean my personal wellbeing, adaptations, emails etc. My first call was to my local NHS service to chase up what was happening with my proposed Counselling sessions. I did an online Wellbeing assessment back in July 2019, I was then invited for a one to one assessment where I was asked various questions ie. Did I have suicidal thoughts? Was I able to get out of bed in the morning? etc. I had stated in my online assessment that I hadn’t had any kind of suicidal thoughts (I mean I want to be here as long as possible to be there for my family). I simply require an ‘out’ or a release so I could help myself deal/cope with not only the stress and anxieties of what had happened over the last 2 years but also to help myself prepare for the future. You see, what most Duchenne families are told when diagnosed is to ‘Live for the moment’ and not to think to far into the future. For the first few months of Alfie’s diagnosis I avoided all things Duchenne. I couldn’t visualise Alfie in any other light than what he is right now. A happy loving little boy who thrives on life.

Almost 2 years on since Alfie’s diagnosis and having previously blocked out any future thoughts such as when he will require his wheelchair more frequently? When will he lose mobility? When will he need to use breathing apparatus? etc. All disturbing visions in my mind. I slowly started introducing myself to the social media groups and most are powerful social media posts of amazing boys/young men who achieve such remarkable things. Truly inspirational. Teenage boys in powered wheelchairs, young men using breathing equipment or the posts you really don’t want to see reading the terribly sad news from a parent that Duchenne had taken their son’s life at a very, very young age. Nothing can prepare you for that I understand but personally I also don’t think blocking everything out is healthy for yourself or your family. When the time comes for change if you’re not prepared then you quite simply could just fall to pieces.

Simply what use are you then? Hence why I felt the need to seek counselling.

During my second assessment in September 2019 I was told a form of bereavement counselling was the way forward. However, I would be placed on a 12 week waiting list and would be contacted in due course. Hence my phone call to them on January 2nd! I was informed that the waiting list was now 26 weeks! So my self help has now reverted back to my blog for the time being until I receive my ‘professional’ help.

In a week where again mental health has been the topic of news with the sad death of TV presenter Caroline Flack, I feel the government need to move quickly to sort this situation out and get people the help they require. As I said earlier my requirement for a form of counselling is more of a coping mechanism but a 26 week wait is still far too long. For all they know my outcome may have spiralled (fortunately it hasn’t) but what about someone who desperately requires help? I’d like to think they don’t have to wait that long. We are all encouraged now that it’s ok to talk and to reach out for help but my concern for the younger generation is that with mobile phones and social media they are losing the ability to communicate or engage with each other naturally. It’s all done via a mobile phone. If they can’t hold a normal verbal conversation with each other, in time how are they going to reach out for help? Online counselling? Which I know is available as I was offered it and it may help some people in certain situations but it’s not for me.

So what have been my ways to self help I hear you all say?

Well being surrounded by incredible family and amazing friends helps massively. Some old ones. Some amazing new ones. One other thing that I’ve always had in my life and can always count on is… MUSIC! (I bet you all expected me to refer to that certain person and get all soppy!). I’m not really a PDoA kind of guy, the missus will clarify that!! So my daily commute consists of a 20 minute walk to the local bus station followed by a 25 or sometimes 45 minute bus journey to work. During the winter months I have been downloading Podcasts to help me switch off during my commute. During a conversation at work my boss, Neil, he mentioned a Desert Island Discs episode that featured the actor Stephen Graham. He’d listened to it during a car journey to see his daughter at her university in Birmingham. I was straight onto Spotify and Desert Island Discs was my new best friend!

I love music, I always have and I always will. I’ve been to many gigs. My first ever being Shakin’ Stevens in Blackpool in the 80’s!!! I got a bit cooler from the 90’s onwards seeing Oasis countless times (including Maine Road and Knebworth), Arctic Monkeys and Kasabian at Warrington Parr Hall long before they were selling out stadiums and arenas. There is no better feeling than a great band walking out on stage and blasting out the first chords of a song that you know and love! It’s no wonder I now suffer from tinnitus with all that exposure to loud music over the years! For me, I can instantly put a song to a place in my lifetime and that’s what i love about listening to Desert Island Discs. Eight chosen tracks, a book and a luxury item. Each song has special meaning to that person about a place or memorable moment in their lives. I’ve listened to episodes featuring George Michael, Ricky Gervais, David Beckham, Stephen Graham, Micky Flanagan, Freddie Flintoff to name but a few. The great thing is that it’s introduced me to extraordinary people such as Lemn Sissay for example. I’d heard of him but his life story is remarkable. I’m also now listening to songs I never new existed in an artists back catalogue.

I’m now going to set a task for my next blog to create my own Desert Island Discs. I’d also be interested to know what yours would be too so feel free to leave a comment.

In my previous blogs I’ve signed off with a funny story and as music has been the flavour of the day, I’ll tell you a little story about Alfie at school! Louise was picking up Mila-Rose and Alfie from school and their teacher asked could she ‘have a word’ with her. Louise immediately thought to herself, what have they been up to now?! The teacher began to tell how Alfie had been in class and was singing the words to the Neil Diamond song ‘Sweet Caroline’. The teacher began to sing along with Alfie who then promptly turned to her and said “How do you know that song Miss?!?”

Alfie had heard the song when we’d been to the watch Leigh Centurions and it had obviously stuck!

That song will be stuck in your head now after reading this blog!

Sweet Caroline da da da, goodbyes never seemed so good!!