A bit late to the party this week, almost as late as Dominic Cummings appearing at a press conference! The sheer arrogance of that man is just unbelievable! Only a short one this week as I’ve not really been ‘in the zone’. So what have we learned this week aside from one rule for one and one for another?
Unfortunately it appears the Government have just put the extremely vulnerable all in the same pot and cast them aside by telling them to just hide away indefinitely. No guidance. No support. No consideration for the people themselves, their families/carers or most importantly, their wellbeing.
They’re quite happy to announce unlimited exercise for the public but as I’ve said previously judging by everyones posts on social media they’ve been doing this since day one! Why didn’t they announce an hours exercise a day for the families who are shielding a child/adult? Let them go for some fresh air without the stress of the possibility of bumping into someone.
The last 9 weeks have really taken its toll both mentally and physically on our family and others we have been in touch with. It’s a complete shambles the way they’ve treated the people in the vulnerable category. Basically the Government have washed their hands of them and are leaving it up to us to make the decision so they don’t cop the blame! It’s a disgrace.
Shops to reopen
To top it all off they announced yesterday (Monday) that some shops are to open from June 1st followed by all non essential shops on June 15th. Is this the place where we are to go and meet up with our families? How is it that we can all mix under one roof in an air conditioned facility circulating god knows how many germs but yet still can’t have our families around to our homes? Totally incompetent!
Mental Health Awareness
Last week I was sent a link by my good friend, Bernie. He’s a fellow ‘Duchenne Dad’ and both he and his wife, Rachel have been very supportive to us since we first met up with them at a Duchenne UK conference last year. The link was to a Mental Health Awareness course that focuses on the importance of Sport and Physical Activity. The programme aims to increase your awareness of mental health and provides you with a toolkit to build resilience, enable and support mental health recovery and tackle stigma and discrimination. I’m almost a quarter of the way through it and it’s been very interesting so far so I’ll be sharing my findings with you all in future blogs.
Walking back to happiness?
As I mentioned in my last blog, Louise spoke to Alfie’s Consultant at Manchester Children’s Hospital in regards to the way forward for us once lockdown ends. She suggested that as long as we followed the strict social distancing guidelines then there would be no reason why we couldn’t go for a short walk. I have to say on doing this the first walk around the block did feel quite strange and I have to admit the anxiety levels were high. Now you wouldn’t think a simple everyday thing would create such stress but for me personally it did. I think more for the reason of making sure Alfie was fully protected and making sure that no one came near him. The not knowing who was round the corner and if they were going to adhere to the social distancing. On one of the short walks last week, I took Alfie out in his wheelchair, a person was approaching us on the pavement and didn’t look like they were going to cross the road. On the opposite side, a family were sat outside on their garden wall! In the end, I had to go into the road to make sure the social distance was adhered! Dilemmas like this make the simplest of things all the more stressful. Thankfully where we live the street isn’t overly busy with cars but I’m not sure if that was just pure ignorance or the fact that the person hasn’t fully got used to the ‘new normal’ yet.
You may think that I have made an uncharacteristic typo in my heading but I can assure I have not. I personally believe that we are no longer a United Kingdom in our stance on Coronavirus. Boris Johnson and his Government have loosened England’s laces away from Scotland, Ireland and Wales in how we move forward in protecting a once United Kingdom against this pandemic. I’m not quite sure what the Government’s thinking was in changing from ‘Stay at Home’ to ‘Stay Alert’, it’s almost as if though they are enforcing a cull. How can you possibly ‘Stay Alert’ against a deadly virus? The original ‘Stay at Home’ message is understandable and quite simply telling us as a nation to do exactly that! It’s also very conflicting that the Chancellor, Rishi Sunak announced that furlough would be extended until the end of October 2020? It’s all very conflicting, I suppose only time will tell.
As you all know we’ve been in complete isolation since the 21st March. We are trapped in our house and it’s surroundings. Thankfully the weather and the garden have been our saving grace. The gnawing anxiety associated with being in physical isolation is emotionally draining. I’m not sure how much longer we can cope as these last two weeks have been incredibly tough. Having been totally locked in, myself and Louise are currently like ships that pass in the night. We’re worn out, constantly anxious, overwhelmed and in desperate need of a break, not just from the kids but from each other! There’s literally been no escape. We usually rely on our parents for our respite but three out of four of them fall into the over 70’s category so I’m not quite sure how that will work out once lockdown ends for us! This prompted Louise to contact Alfie’s Consultant at Manchester Children’s Hospital, she has given us permission to go out for short walks around the perimeters of where we live. She knows we’re sensible enough to observe social distancing, we just have to be careful of others who maybe ignore that fact. After all you can be the safest driver on the road but there is always one careless driver who will crash into you. I’ll update you all on our parole status in the next blog.
We’re finding it even more difficult to get Mila-Rose and Alfie motivated to do even the slightest bit of school work. People say it’s ok they’ll catch up but being with Alfie these last 2 months has only highlighted the fact even more how much more support and assistance he requires in regards to his learning and sometimes challenging behaviour. We’re their parents not their teacher, we’re not equipped with the skills or the tools a teacher possesses. I’ll give you an example, Mila-Rose and Alfie’s teacher this week very kindly did a video call with them to catch up and speak with them about their school work. Honestly they sat there like butter wouldn’t melt, like perfect little children! Two minutes after the call ended they were both a complete pain in the arse again! It’s a desperately challenging situation for any parent but even more so for parents in a similar position to ourselves.
There are around 1.1 million children in the UK with a disability. In England, there are nearly 87,000 children and young people with life-limiting or life-threatening conditions. I would say that a high percentage of their parents are on the brink of collapse and that they urgently need support as they are at the point of burnout. I do hope the Government have taken this into consideration once we’re all out of lockdown as a lot of families of disabled children are going to require increased mental health support on the part of both their children and themselves.
BBC Radio Manchester interview
On Tuesday morning I was invited to do a short interview with Becky Want on her BBC Radio Manchester Breakfast Show. Prior to the interview, I had spoken with the Producer of the show in regards to the content of the interview and she said Becky would just want to know about Alfie’s condition, Action4Alfie and about my achievements from the #HappyBirthdayAlfie social media campaign. As it was going out live to listeners across Greater Manchester I was nervous enough already! Take a listen at the link below and you’ll hear that the majority of the interview was about lockdown and shielding! I think I handled it well enough, after all I’ve watched enough politicians swerve questions over the past couple of months!
This Saturday (16th May 2020) we should have been hosting our joint Leighnix Nights fundraiser with Two Hips, One Knee. Sadly we had to postpone the event due to the Coronavirus pandemic. Our good friend, Rosey McNally has Avascular necrosis (AVN), a life crippling disease. In short AVN is a disease that stops blood flowing to your joints and in turn means that the bone slowly deteriorates and eventually dies. Despite this diagnosis she is incredibly strong, full of life and is one the most positive and kindest people you will ever meet. Earlier this year we came together and planned Leighnix Nights, we completely sold out of tickets to this event within 5 days of them going on sale! We’re all absolutely devastated it couldn’t happen but everyone’s safety has to come first. In the words of the man himself, Brian Potter… We had a dream, people, we had a dream! Bigger, better, faster, stronger, rising from the ashes. Leighnix from the Flames! Watch this space!
On 7th May 2016, Leicester City played their final home game of the season against Everton. After that game they received the English Premier League trophy in a season which they defied almost uncertain odds. In the stadium that day there were 32,140 people. Picture in your head the football stadium pictured above packed to the rafters. The harsh reality today is that almost the same amount of people in the stadium that day have now lost their lives in the UK to Coronavirus. Alarmingly, a percentage of people in the UK continued to ignore the Government’s advice this weekend whilst celebrating VE Day and still think they can defy the odds that Coronavirus won’t affect themselves or their families. I’ve seen clips online of large mass gatherings dancing the conga and as I’m writing this a whole street doing Oops Up Side Your Head! In 2 weeks or so those people may pay the consequences and unfortunately so might many other innocent people.
Close to home
For us personally, it’s getting very close to home as an elderly couple who live just 3 doors down on our street have both had Coronavirus, thankfully they have both made a full recovery. 10 weeks on from the first reported death in the UK, it’s still here and it’s not going to go away anytime soon. If the way people have ignored the lockdown this weekend then in another 10 weeks we maybe looking at a death toll that would fill Old Trafford (approx 75,000).
In this period of time, the entire world has had a glimpse of what it feels like to be a patient and parent with a terminal diagnosis—to be told potentially there are no tests, no treatments, and no answers. The Coronavirus response shows how much more we can do to change the system and fight against terminal illnesses. Now perhaps people will understand a little what having a child with Duchenne feels like. c/o Raising Reed Facebook post
I have to say this week has been the toughest of all the weeks we’ve been in self isolation. It now feels as if there is no escape. In fact there isn’t. You personally maybe self isolating but you have the option of leaving your property to go out and do a bit of exercise or call at the supermarket. I can imagine it’s quite literally a breath of fresh air to get away from your partner or a break from the kids constantly screaming at you for a snack! We all need that space! Unfortunately we don’t have that kind of luxury and the frustration of this has definitely crept in this week. Self isolation has pushed many of us to spend more time with our families than ever before. We’ve had to find the solution as to how we work, parent, home school and simply get on as we move through the same rooms all day long. This would quickly deteriorate even the most stable of relationships! A simple fix to this problem today was quite simply the warm weather and a hosepipe sprinkler! It’s not always that simple!
Choose your battles wisely
On Tuesday evening, we endured another of Alfie’s night time behavioural meltdowns and it went on for almost 3 hours. A small trigger of simply not wanting to get into bed at 7.30pm resulted in him only going to sleep at 10pm that evening thus leaving us both physically and mentally exhausted. So much so I retired to bed as I literally had no energy left.
Problematic behaviours are quite common in all preschool children, and boys with DMD are no different. However, young boys with DMD may have more difficulty with impulsivity and emotional control than other children their age. They are also more likely to be rigid and inflexible in their thinking, which can result in noncompliance or arguing. They may have difficulty making transitions. They may also be taking steroid medication with side effects that can impact their behaviour, such as making them more emotional and active than normal. c/o Parent Project MD
Unfortunately, it continued into the next morning for over an hour as I took a stand against his behaviour and took away the TV remote control. A battle I was never really going to win. This prompted Louise to speak to an educational expert (whose son also has Duchenne) a couple days after this latest incident and he stated that in this scenario you have to choose your battles wisely. His advice for the future is to take Alfie out of the situation, maybe downstairs for a while to calm him down then once he’s settled down take him back up to bed. Wise words when you’re not in ‘the moment’ but when you’re physically and mentally challenged after a long exhausting day it’s difficult to know what to do for the best. For us as parents these are all learning curves and almost the same as having a newborn baby, everyday is different and we’ll come up against a new challenge daily.
I decided to give the blog a bit of a spring clean this week along with a new logo. The ‘d’ on the left representing Alfie and the ‘D’ on the right representing myself. I’ve also set up a dedicated Facebook page to the blog so please click the link and give it a thumbs up. Thank you.
BBC Radio Manchesterinterview
On Tuesday 12th May at approx 8.15am, I’ll be doing a ‘live’ interview with Becky Want on BBC Radio Manchester Breakfast Show discussing my recent Action4Alfie social media campaign. I’m not quite sure what to expect as I’ve never done a live radio interview before! Wish me luck!
Well that’s almost 7 weeks isolation completed and we’ll just have to wait and see what Boris announces in regards to lockdown later today.
It’s Sunday morning, the one day I try to keep as routined as possible to allow myself time to blog my thoughts and clear my head for the new week ahead. A nice breakfast to set me up consists of grapes, sliced peaches and yoghurt topped with granola. Washed down with a nice cup of builders tea! Ahhhh!
In the past, the previous day used to be so pleasurable. The first full day of the weekend and spending quality time with the family. I don’t know about you but now Saturday’s just seem to draaaaaaaggggggg, so much so that during this lockdown it’s now my least favourite day of the week!
We’re now approaching the half way point of our self isolation period and I’ve been told on a few occasions this week that life on the outside is slowly getting back to normal. More traffic on the roads??? More people out shopping??? Aside from the idiotic selfless people that had previously ignored all the advice about staying at home, I think we should be asking the question why this week the government chose to announce that we were past the peak of the pandemic??? Are they really trying to encourage a second wave of Coronavirus? Personally, I think this announcement will encourage more people to think we’re over the worst and that it’s now ok to go about as normal with our everyday lives. We still don’t have any clarity on what happens after the 12 week period in regards to protecting the vulnerable like Alfie. Coronavirus isn’t just going to disappear overnight is it? What’s to say that our immune systems aren’t lower than normal after the full 3 months isolation? After all we’ll have had no contact with anyone during that period of time. Are we just to be expected to just return to normal as if nothing has happened? I could go on but we’ll just get into the politics side of things and that’s a subject I’m choosing to ignore for the time being due to it being quite a prominent subject the last couple of weeks.
Last week was quite a comedown after the previous few weeks antics. I can only describe this past week as feeling like the day after your wedding day. You put all the time and effort into planning this one special day, the day arrives and before you know it’s gone in a flash! Like a wedding though, we have special memories that have been created and ones that will last forever (unless you’re now divorced!!), not just for us but also for our family and friends. I think probably the reality of all this will only really sink in when it appears next year on my Facebook memories when Alfie’s birthday comes round again! It was quite funny the other day as Alfie was watching James Corden’s Carpool Karaoke on YouTube, his ‘passenger’ was Ed Sheeran. Alfie turned to me and innocently said “Daddy, is he one of your friends too?!!” Erm, no Alfie but just wait whilst I contact his agent, I’ll see what I can do!!
On Monday I was contacted by journalist, Nooruddean Choudry from Joe.co.uk in regards to him doing a feature for their Twitter page about the #HappyBirthdayAlfie campaign. He was such a nice genuine guy and really made me feel at ease during the Skype interview. I spoke to him in regards to the campaign itself, why it’s important for people to still #StayHomeSaveLives and also about Alfie’s condition. It was a 30 minute interview cut down to 3 minutes but I did speak about the positive response Alfie has had to his steroid treatment, the negative side was yet to come…
Alfie takes 10mg of prednisolone daily and it’s made such a massive difference to how he goes about his approach to the simple everyday things we all take for granted. Unfortunately this week we also saw the negative side effects of the steroids, they can cause behavioural problems. In the past we used to experience quite a lot of really bad meltdowns in particular before bedtime. We introduced Melatonin to Alfie’s bedtime routine about 3/4 months ago. It helps control his sleep pattern. It makes him fall asleep quicker and less likely to wake up during the night. Unfortunately we missed his bedtime ‘slot’ on Wednesday by about 10 minutes (that’s all it takes) and we experienced one of his meltdowns. Now I know you’re going to think that all kids have meltdowns and they do, some worse so than others but with Alfie he becomes a different animal. Our happy go lucky loving little boy disappears in a flash. It’s almost as though he loses control of himself and it triggers a switch. It took us both an hour and a half to eventually settle him down and get him to sleep. We were both exhausted but then unfortunately we had to go through it all again the next morning for about an hour just because he didn’t want to have a bath. Once he’s calmed down he’s back to his loving little self. During these times you have to just simply ride the storm. When you think back to the times before he took the steroids and couldn’t walk 3 strides without his legs giving way or not being able to climb up one step of the stairs. At this moment in time the positives really do outweigh the negatives with the steroids but during the meltdown moments you really do feel like Dr Victor Frankenstein.
So after quite a positive April, I’ve decided to set myself some goals for May. One of those is to try and promote my blog on social media. I really do enjoy writing it and as I’ve said previously it’s my coping mechanism in so many ways. I’ve had so much positive feedback from family and friends so please if you can continue to share it with your followers on social media it would be a great help. Who knows you may even be helping someone else in turn. I’m also going to continue to raise as much Duchenne awareness through the Action4Alfie Facebook and Twitter pages, so CELEBS BEWARE I may be back stalking you in the near future to encourage people to STAY AT HOME and protect the vulnerable.
My final goal is to aim high! The future you see, is the person you will be!
Have a great week! Stay Home, Stay Safe and aim high!
Please follow (and share) our Action4Alfie social media pages…
Well what a week that was! If you’d have said to me at the beginning of 2020 that by mid-March we’d in full Coronavirus lockdown and unable to go past the front gate I’d have brushed it off. If someone then said four weeks into that lockdown you and your family would be on Granada Reports (twice in one week including once ‘LIVE’ from your dining room!!) and receiving birthday messages to Alfie from Ant & Dec, James Corden, Hugh Jackman and Stephen Mulhern etc then I’d have laughed in your face! Well it did actually happen and this is how it all came together…
Alfie’s 6th Birthday
Well! If you read the transcript above from the second of my Isolation blogs, you’ll know that’s when it all began but it started very slowly. In my last blog, Be Like Bambo, came my Bruce Lee moment (as it’s now known!). I bent with the wind and boy did it work! My sister, Janine had also been emailing many celebrities such as Joe Wicks, Paul Hollywood etc but she’d also contacted our regional news programme, Granada Reports.
Victoria Grimes, a TV reporter from Granada Reports (or Grandad Reports as Mila-Rose and Alfie call it!) contacted her to discuss the email she’d sent and she said it’s the kind of story that would bring a smile to peoples faces during these dark times. We had our first conversation with Victoria on Wednesday 15th April to see which celebrities Alfie (and Mila-Rose) liked. Ant & Dec were mentioned as well as Stephen Mulhern, Mr Poppy from Nativity. James Corden was also but mentioned but as he was in L.A. it probably was a bridge too far. At that point though we had more chance of getting a message from Archie the Donkey from Nativity!
w/c Monday 20th April
On Monday, we discussed with Victoria the details of the Skype interview that was planned for Wednesday. I took a few shots of Mila-Rose and Alfie in their Toy Story outfits that would be used in the report. These were sent to Victoria to use in the edit in the hope that maybe a few regional celebs would see this and maybe do a message. At that point she’d been in touch with the ITV press office who contacted the likes of Ant & Dec, Stephen Mulhern, members of the Nativity cast etc. They were still a long shot.
By Tuesday, Victoria had unbelievably secured messages from Stephen Mulhern (which she said was very special) and Catherine Tate. Everything seemed to be coming together. She’d also managed to get through to Ant & Dec’s agent but she pointed out that it wasn’t a given. As things were moving along, it was still in the back of my mind in regards to James Corden. Alfie was watching him more and more that week on YouTube, I’m not quite sure he fully understands his pranks but he just laughs and laughs at him! That day we also received an amazing message from all the players and coaching staff at Leigh Centurions, it was arranged by our good friend and Alfie’s mate, Gregg McNally or Greggles as Mila-Rose and Alfie refer him as! I honestly couldn’t get the grit out of my eye after watching that video!
Wednesday came and by lunchtime we’d done our Skype interview with Victoria. It was very funny, as we now knew she’d secured Stephen Mulhern’s message she was trying to prompt Alfie into talking about him and his show, In for a Penny. Firstly, by asking him what his favourite TV show was, Ant & Dec he replied! Same again having secured Catherine Tate, she asked what his favourite film was aside from Toy Story – he replied with PlayMobil – The Movie! You couldn’t make it up! During the Skype interview, I received an email notification from Marc Wootton’s agent. We now had a message from Mr Poppy from Nativity!
By Thursday morning I was on the phone to Fulwell73, the agency of James Corden. I was now confident we could get something (I think Victoria also had the same feeling as she said she’d sent an email to Hugh Jackman’s agent!). I had also sent a tweet to James Corden but I wasn’t that confident of him seeing that as he has well over 10 million followers on Twitter! I messaged Matthew McNulty to let him know I’d contacted Fulwell73. He replied to say that he’d text one of his mates who was in Gavin and Stacey, an actor by the name of Andy Knott. We were now as Matthew said “attacking him from all sides”. Then at 5.07pm came the message of all messages! I pressed play on the WhatsApp video message. the sound of a male voice singing Happy Birthday and the camera panning round to reveal… JAMES CORDEN!!!!! WTF!!! I couldn’t stop smiling, inside and out. A sense of just pure joy! I immediately ran upstairs to show Louise, we both looked at each other in shock but the feeling was just amazing! I just wanted to show Mila-Rose and Alfie there and then to see their reaction but that would just spoil the whole surprise. That evening everything just snowballed, we started to get messages from footballers Emile Heskey, Jermaine Jenas, Robbie Savage, Robbie Fowler, Jason McAteer, Adam Lallana, Leon Osman and Chris Kirkland. All but one of these were courtesy of our good friend, Gail Ashton, she had kindly fundraised for Alfie in the past. Her brother-in-laws brother is ex-Liverpool player, Stephen Warnock. He had brilliantly rallied the troops to get pull all these messages together. We have amazing friends who are just so kind and will always go out of their way to help. That evening we also had a call from Victoria, we would be on Granada Reports on Friday – LIVE!
Friday came and the nerves were jangling! We were going to be on live TV, God knows what Alfie would come out with! At lunchtime the line up was fully complete, Victoria had got the messages from Ant & Dec! We now had the Birthday Dream Team! Just 4 weeks ago, we were worrying how we were going to tell Alfie his Toy Story birthday party was not only cancelled but he also wouldn’t be able to celebrate it with all his family and friends. Now he would be on live TV having celebrities wishing him a Happy 6th Birthday! We went live and Alfie received messages from James Corden, Ant & Dec, Mr Poppy, Catherine Tate, Laura Tobin, Charlotte Hawkins, Ben Shephard, a personal message from Hugh Jackman and Stephen Mulhern. In his message, Stephen took it to another level and invited Mila-Rose and Alfie to have a FaceTime call to play the Stopwatch game! So so surreal. Everything was wrapped up and after the show had finished Victoria suggested we watched it back. There was a 10 second delay on us watching it so we had to mute the TV so we could switch back to face the camera. Also, Mila-Rose and Alfie were so ecstatic we didn’t really hear any of the messages due to their screams of joy and excitement! We watched it back and I could feel the emotion getting to me, by the time the James Corden message was on the screen I’d left the room as I was in bits. A mixture of joy, relief, emotion and pleasure had hit me all at once. 4 weeks of putting this together and I’d exceeded all my expectations and more. I looked across at Victoria and she just said I want to give you a great big hug but as she and Simon, the cameraman were outside on the patio they were unable to enter the house. I just about managed to pulled myself together to make sure Mila-Rose and Alfie didn’t see me trying to get the grit out of my eye once again!
Alfie’s actual birthday!
This was almost as surreal as the previous few days! We were up at 5am as Mila-Rose and Alfie were so excited! Presents were opened, lots of food/sweets were consumed and we even had a little street party thanks to a visit from Louby Lou! Alfie then had a virtual party with our family and friends, he absolutely loved it! During the party I had a phone call from a number I didn’t recognise, I rang it back later it was only Stephen Mulhern! What a lovely guy and true to his word! I explained that Alfie had been up since 5am and had a lot of excitement the last few days and he just said I’ll FaceTime you whenever is best for you. He didn’t have to do that but he did and we played the Stopwatch game on Sunday morning. He was just amazing with Mila-Rose and Alfie! A real down to earth guy who just wanted to do something special for our family.
I’m so proud of what I’ve achieved and I’ve given our family and friends a memory that will definitely last forever. From the moment of Alfie’s diagnosis, my/our aim has been to try and make the worst case scenario into a positive. My main target for this project was to first and foremost make Alfie’s 6th birthday as special as possible and with the help of our fantastic family and friends we’ve achieved that. I also wanted to raise awareness of his condition, Duchenne Muscular Dystrophy and given one phone I’ve had already this week it looks like that could well be achieved in the coming days. I’m not a medical expert, I won’t ever personally ever be able to find a cure. My aim when I started Action4Alfie was to make sure people knew about DMD and that no parent went through what we went through at the time of diagnosis. If just one of these high profile celebs can stick with us and maybe help in anyway then I’m sure someone of great importance may just stand up and take note. So that’s about it really, I know I’ve gone on a bit but this blog is now documented for both Mila-Rose and Alfie to look back on in years to come and if someone asks them what did you they do during the Coronavirus lockdown of 2020. They’ll say “Well, let me tell you a little story…”
Stay Home. Stay Safe and try to create something memorable this week!
“Notice that the stiffest tree is most easily cracked, while the bamboo or willow survives by bending with the wind.” Bruce Lee
This quote from Bruce Lee has been my inspiration this week. It came up on my CALM app during one of my meditation sessions. We are all guilty of thinking too much. Scared of failure that we spend our lives trying to approach a problem from just the right angle. Bruce Lee obviously believed in just cracking on. Not by being reckless, but coming out of your comfort zone and trying to make the best of a situation at hand.
Bamboo is quite incredible. It grows very fast particularly during the rainy season with much of the growth occurring underground. It may not look as impressive as the thick oak tree, yet it can withstand the harsh extremes of cold and hot. Most notably, it remains firmly rooted in the ground as it sways gently in the wind. Even if it seems to be bent over under the weight of bad weather, it usually pops back upright. So, be like bamboo. In your professional and personal life, choose your battles wisely. Compromise when it doesn’t go against your core beliefs. Allow for the growth to happen under the surface. If there is a lot of pressure, pause in order to not break. Whether it seems like a breeze or a storm, flow with situations as they change. Constantly assess new information as it comes in. Stay grounded in your values while understanding that flexibility is a sign of strength. I did a little research into the quote and found the above transcript on http://www.power-living.com
My Bruce Lee approach to our Action4Alfie social media #DuchenneAwareness campaign now seems to bearing fruit. Although, I have to say it’s been a tough old slog so far and the amount of tweets/DM’s I’ve sent has probably put me into the stalker category! For those of you that may not be aware of the campaign, here’s a brief explanation… It’s Alfie’s 6th birthday next week, as we’re in self isolation we’re unable to host a party for him with our family and his friends. Your children’s birthdays are important whatever your situation but since Alfie’s diagnosis we try to make them extra special and create the most amazing family memories. In the past for either Mila-Rose or Alfie’s birthday we’ve either been away on holiday or we’ve had memorable parties for them. This year although the circumstances are unprecedented it wasn’t going to stop us. It’s all about turning a negative into a positive so we’re hosting a virtual Toy Story party with our family and friends. We’ve ordered lots of Toy Story party decorations which Alfie is very pleased about and all his friends will be dressing up! This was then followed by my lightbulb moment! Whilst sitting at the end of Alfie’s bed after bedtime stories with him and Mila-Rose, the idea of a social media campaign for Alfie’s 6th birthday, Duchenne awareness and Stay at Home message (originally it was Wash your Hands). It was destined to work!
For those of you on Twitter, you’ll know that the #HappyBirthdayAlfie #DuchenneAwareness #StayHomeSaveLives campaign is well underway. I’ve tried everyone, tweeting the likes of Tom Hanks, Tim Allen, Prince William, Piers Morgan, James Corden (as Alfie loves watching his pranks on YouTube!). Basically A listers to Z listers and back again. Most to no avail and the frustration started to grow. Then came the Bruce Lee moment and like the bamboo, I paused in order not to break. I reevaluated and decided to use the resources I had access to, why I didn’t do this in the first place I’ll never know. Actor, Matthew McNulty (Deadwater Fell, Versailles, The Musketeers) had helped us out on quite a few occasions with our fundraising events, he very kindly read a story to the children in the audience at our screening of Toy Story. I messaged him to ask if he could help out and the next day his video message was in my WhatsApp inbox closely followed by videos from Ben Batt (Our Girl) and his wife, Rebecca Atkinson (Shameless) and Andrew Gower (Outlander, Carnival Row,Miss Scarlet and the Duke). Matthew will also appear in an upcoming episode of Doctor Who and we’ve also received a message from the Doctor herself, Jodie Whittaker! How amazing is that???
6 is the magic number
Louise (my wife), previously worked with (Lady) Sarra Hoy, the wife of six time Olympic champion Sir Chris Hoy. Sarra has been very supportive of our work to raise Duchenne awareness and has kept in touch via Twitter. She is also an ambassador of the charity Bliss: For babies born premature or sick. I got in touch with Sarra in regards to what we were doing and she and Chris sent their message over this week. Six definitely is the magic number! Check out the videos and share the hell out of them on our @Action4Alfie pages. Links at the bottom of this blog.
I’ll continue this week in my pursuit of getting more messages. My aim is to simply just make people aware of Duchenne Muscular Dystrophy. I do believe we could be just one retweet away from it reaching that all important person who could work with one of the Duchenne charities to guarantee access to the right care, to improve research and maybe even one day find that all important cure.
This is not just for Alfie, it’s for the whole Duchenne community.
Happy Easter peeps! What’s the best way to make Easter easier? Put an “i” where the “t” is! I hope you’re all staying at home getting ready to raid the cupboards and the fridge on this glorious bank holiday weekend. I mean it’s not like you’ve not been doing that for the last 3 weeks is it??? I walked past my fridge last night and I could’ve sworn I heard two onions singing a Bee Gees song. When I opened the door it turned out it was just the Chives talking!
I’m here for 12 weeks, well another 9 in fact, not that I’m counting down!
So in a week that started with Boris Johnson in intensive care and ended with him playing Sudoku and watching Love Actually followed by Withnail and I, here’s what happened in our #SelfIsolation world that we now relate to as Salesways or Alfcatraz! (As you can tell the dark sense of humour is accelerating!).
The week started off with the delivery of our government food parcel. It’s becoming quite famous on a Duchenne Dad’s group that I’m a part of, as Monday’s are now known as Hash Monday! The parcel is a mix up of Fruit, Veg, Tinned products etc and includes a tin of Corned Beef, Potatoes and Carrots. Perfect ingredients for a bit of Corned Beef Hash. This week I decided to go with the American version and served it with some ‘over easy’ fried eggs (minus the carrots). The problem that arose for myself was the key was missing on the tin. Now I don’t know about you but I never find it easy to open a tin of Corned Beef at the best of times but without a key it’s different gravy. I set about it with the tin opener and you’ll never guess what happened? The tin opener broke! So for the past week I’ve been opening tins of tuna, sweetcorn etc by puncturing around the edges of the tin with the sharp end of the tin opener. Thankfully my cousin, Trish did a bit of shopping for us this morning and got us a new tin opener. I know exactly what you’re thinking, how rock ‘n’ roll is this self isolation malarkey!
That was the week that was
This week we’ve set about several tasks around the home to keep us occupied. Cupboards/Drawers cleared out. Clothes sorted. All those extra coat hangers gone. Next on the list was the garage clearance. Before #Coronavirus was upon us, we were at the closing stages of finalising the adaptations for our home. These were due to start in the Spring. For the time being the adaptations are on hold but our existing garage at the rear of the house is to be knocked down and replaced with an extension that will become Alfie’s bedroom and wet room for when he is older and no longer has the same mobility he has now. At the beginning of the adaptation process, I can only describe it as preparation for a horrific car crash. You find yourself going to a showroom looking at height adjustable baths, self cleaning toilets and the rep from the company is asking you questions that you either can’t really answer or just feel sick at the thought of imagining the day you’re aiding Alfie to use the equipment. The garage isn’t used for the car, it’s a storage hub that when you clear it out you just think how the hell did all that fit in there! Skip hired, garage almost cleared and another job almost done!
Thursday’s have now become the day we thank all the UK’s key workers by clapping at our front doors at 8pm, in particular for all the amazing frontline staff of our NHS. As the weather had been nice we decided to do a spot of gardening with Mila-Rose and Alfie. We had some blue and pink stones in the garden so Louise, Mila-Rose and Alfie had done some love hearts in the front garden with the stones so the idea came into my head to make an NHS logo in the middle of them so we could show our appreciation. Here’s the end result…
Social Media Questions
On Saturday, I did a post requesting for anyone to send any questions in to me that they’d like me to answer. The questions came in thick and fast!!! So here’s the answers!
My nephew Finley asked How many laps of the garden was my 2k walk? The answer to that will be revealed on my next walk as I didn’t count!!
Our good friend, Susan G asked if we were still getting dressed up as she didn’t think we had any slobbing gear! Sorry to disappoint you Susan but it’s t-shirts, joggers and shorts only during self isolation. As for the quality date time, it’s like being on an all inclusive holiday for Louise as it’s a la carte meals all day, everyday! We’re using the evenings to Netflix and chill as when you have 2 children like ours it’s literally that! Sit down and watch a boxset plus we’re experienced social distancers!!!
Another good friend, Paul asked if the beard is past the itchy stage. I think that question was for Louise so I’ll check!!! Seriously though, it’s actually at the stage now where usually I’ve always given in and had a shave. I’ve bought myself some beard oil so if I get to the end of next week I think I’ll surpass the itchy stage. By the way it has many colours but its predominantly salt and pepper or distinguished as I like to call it!!
I’ll leave it at that for this weeks isolation installation. I’ve got 2 Lamb Shanks in the slow cooker that need attending to!
Is anyone actually keeping up with what day it is? I think it’s the weekend but I’m actually not quite sure, each day just slowly blends into the next one. What I wouldn’t give to go for a walk/run and see the view pictured above. I think once this is all over we’ll certainly appreciate the things we take for granted. The choice of which joggers to wear and whether to shave my ‘isolation’ beard off is becoming an overwhelmingly difficult daily decision! Oh the joys! The main thing is though we’re all safe and healthy so that’s all that matters at the moment.
Home Schooling has taken a bit of a dive this week, everything seems to start off really well in the morning. The focus is there from Mila-Rose, Alfie not so much. We break for lunch then playtime then seems to last the rest of the afternoon! Absolutely no interest whatsoever and by 7pm they’re both asking to watch a film!!! Errr no, it’s bedtime soon and you’ll be off upstairs to get your PJ’s on!
As I said, Alfie’s been taken out of his routine and boy has it shown! Most boys with DMD have learning or behaviour difficulties. DMD is not just a muscle disease. The disease is caused by a genetic defect that influences the development of the muscles AND the brain. Children with DMD are missing a protein, called dystrophin, from both their muscles AND their brain. Without dystrophin in the brain, some areas may not function as efficiently, and this likely results in the observed learning problems that children with DMD have. If a brain develops without dystrophin it may not transmit information as efficiently as a normally developing brain. This lack of efficiency may impact upon the coordination of cognitive information; that is to say, Alfie may have difficulty processing cognitive information in a quick and coordinated manner, something that might be rapid and effortless in other children. As such, Alfie has difficulty when trying to process information which requires coordination of multiple pieces of information. For example, trying to process a set of instructions with many pieces. A possible real life example: We’d ask Alfie “Go upstairs, brush your teeth, put your PJ’s on and get into bed.” We’d then go upstairs and find he’s put the PJ’s on the bed. He didn’t do as he was told, but he feels he has, because he could only “get” part of what was said and knew it had something to do with PJ’s and bed. He can understand the parts of we said, it’s when it’s all put together that it is just too much. (Information source: Parent Project UK)
Boys with DMD have difficulty discriminating speech sounds. Alfie makes sound substitutions in his speech and has difficulty repeating verbal sounds accurately, and then finds learning to “sound out” words problematic. We have an Amazon Echo at home, but instead of ‘Asking Alexa’ he says ‘Balexa’. In general, the children with DMD show reading difficulties similar to those shown in children with dyslexia or reading disabilities, and often cannot tell some sounds apart from others.
Put this into the context of taking Alfie out of his usual school routine and trying to Home School not just him but Mila-Rose. To be honest Mila-Rose will actually sit down and do some of her school work and she’s an excellent reader and very creative with her writing. Maths needs a little bit of work but it’ll come to her in time. Maths was never really my strongest subject at school but through life and work experience you get by. You can imagine what the last 10 days have been like. It’s made with myself and Louise even more astonished as to why his EHC plan isn’t in place yet and the fact that he requires access to a one to one and repetitive learning. His attention span for each subject is roughly 10-15 minutes at the most then his focus waivers. This will lead to frustration and that then leads to behaviour where we encounter a massive meltdown and sometimes an aggressive nature which is very distressing. We have now decided that we’ll learn Alfie through play and use activities that will enhance his fine motor skills. He loves painting/drawing, cutting and sticking, jigsaws/puzzles, dancing/singing so I think this will be a positive way forward for the next 10 weeks. Don’t get me wrong it’s not all negative, Alfie is a very loving and sociable boy the majority of the time. His rote memory is exceptional, he’ll remember a place or memory from 2 years ago like it was yesterday! He can remember large chunks of information, like conversations from movies, words to a song etc. He’s a very comical little character and he doesn’t half make us laugh with some of the things he comes out with. He also has a little bit of an operatic voice when he sings so who knows where that will get him in the future.
Happy Groundhog Day!
See what I did there!! This week has been very tough mentally, last week was great as the sun was out and we could do school activities outside. Video calls were all the rage and the whole self isolation thing was a bit of a novelty. Week two has really been a wake up call and I hope this isn’t the shape of things to come. The last couple of days, I’ve been doing some Binaural Beats sessions on Spotify and also downloaded the CALM app on my phone. It’s a kind of stress relief meditation exercise. The first one was that good I fell asleep! I restricted myself to 20 minutes the next day! I think I will partake in some laps of the garden, perhaps 200 laps might equate to a 5k run. Even my steps have been well down on my Garmin. I’ve also been trying to focus on various Action4Alfie projects to keep me focussed. Later this month is Alfie’s 6th birthday and sadly we’ll still be in isolation. We were dreading the conversation with Alfie that he wouldn’t be able to have the Toy Story 4 party he’d planned but he actually took it quite well. We softened the blow by designing some virtual party invites so he can still share his birthday with his friends on Zoom. He’s now on countdown and asks every morning how many days it is until his party!
Alfie’s 6th birthday
So anyway, I decided to come up with a little social media campaign for Alfie’s 6th birthday. I’ve invited people to leave a video message on his social media pages and at the same time try to help raise awareness of Duchenne and the #StayHomeSaves Lives to protect the vulnerable. Now, when I have these ideas I visualise the perfect scenario of ‘A’ list celebrities getting wind of it, wishing Alfie a Happy Birthday and raising much the needed awareness of his condition. I actually even went as far in my head imagining having a video call ‘live on Good Morning Britain’ with Piers Morgan discussing how I came up with this amazing campaign to make Alfie’s birthday extra special. It would be followed later by a video chat with Holly Willoughby!! Well we can all dream!! (You see what self isolation does to you, we’re not even 2 weeks in!). So anyway I went ‘live’ with the campaign and let’s just say it’s taken off very slowly!!!! https://twitter.com/Action4Alfie/status/1245301561716355072?s=20
Unfortunately during these unprecedented times, people are more interested in sharing viral videos/memes of people doing stupid things whilst in lockdown! Frankly they are just becoming a little bit boring! I find it really frustrating when you’re passionate for people to see what you’re trying to do doesn’t come to fruition the way you envisaged it. Then again, maybe social media is a place for other people to escape from the real world. Imagine if one of David Beckham’s kids had Duchenne or say, Prince George was diagnosed with it? We’d all be reading about it, social media would be an outpouring of grief and everyone would be commenting how awful it is. We’d all know all about how it affected them and their families. The support network would be there and I’m sure the standards of care would literally change overnight. Now you may think I’m just feeling a bit sorry myself and maybe I am but this is what you come up against in terms of trying to make people take note. I’ll keep plodding on, I won’t give up the fight and I certainly won’t stop trying to raise awarenesss. My drive and determination will always be there and it will take just one high profile person to share or retweet a post then it will snowball!
It’s now Saturday afternoon and we’re trying to make the weekend, feel like a weekend. During the week we all sit down and eat together which I really do enjoy. Tonight though we’ll eat when the kids have gone to bed! We’ve ordered in our luxury items tonight, it’s going to be like when they all sit down for the big feast on I’m a Celebrity, Get Me Out of Here! I’m having Rib Eye Steak, Chips, Asparagus, Mushrooms and Peppercorn Sauce washed down with a nice glass of red. Louise is having a Chinese banquet, hopefully there won’t be any bats present! I’m looking forward to relaxing and having a drink tonight. I think when you’re in this isolation situation, it could be quite easy to fall in the trap of having drink every night. By week 12 though you could have a massive problem that wasn’t there at week 1 and we certainly don’t need anymore problems in our life so it’s a weekend tipple only for us. Once I’ve devoured my Steak, I’ll be ‘heading out’ to catch up with my mates on Zoom. I’ve found this really good to wind down and have a sense of normality, it’s good to see familiar faces and to chat or have a moan about the week gone by.
Which reminds me, earlier this week we celebrated our 8th Wedding Anniversary. I looked into deep Louise’s eyes, my heart fluttered, I felt a connection, something deeper, something magical, I was transported to another place and I thought, blimey these binoculars are brilliant!
I’ll leave it at that for this weeks isolation installation!
Good day to you! I hope that like me, you are in the comfort of your own home and staying safe.
Myself, Louise, Mila-Rose and Alfie will reside for the next 3 months (or 12 weeks / 84 days / 2016 hours / 120,960 minutes to be precise) in our happy humble home. I’m not even going to calculate it in seconds as that will probably tip me over the edge at the realisation of this extraordinary historical event. A global pandemic has brought us together as a family to prevent our precious little boy Alfie and others like him from contracting this killer virus.
As we expected, the official NHS text message arrived advising us against leaving our home for 12 weeks. We’d expected Alfie to be on the Coronavirus vulnerable list. We’d had an appointment at Manchester last week with his consultant, who informed us that as he takes steroids, it was highly likely he would be included in the extremely vulnerable category.
I’m going to use my blog to document the ups (I’m positive there will be many), the downs (I’m definite we’ll have those), the uncertainties (well who knows?) and the shear fear (I’d rather not go into that just yet) of self isolating. I never thought that my lifetime something as unprecedented as this would happen. We are now part of an historic event, something that will be discussed for many, many years to come. I can only describe it as being dropped into a Netflix movie that you can’t get out of.
Last week our anxiety levels began to rise as the virus was spreading fairly rapidly in the UK. Almost at a higher rate than in Italy where Coronavirus was killing people with underlying health conditions at a very fast pace. There had been talk of the schools closing down imminently earlier that week. By Tuesday evening, we decided enough was enough and we couldn’t put Alfie at risk any longer. We put him into self isolation along with Mila-Rose from Wednesday onwards. By Friday that week all the schools were to close apart from being available for the children of key workers. Home schooling was now also on our agenda.
By Friday evening, the news was getting bleaker by the minute and the announcement came from the PM Boris Johnson that from Saturday those who were classed as extremely vulnerable would have to be shielded for a period of 12 weeks.
I usually do our weekly shop on a Sunday but I’d decided that should we all go into self isolation from Monday onwards then we’d need supplies. Toilet Roll was the bizarre choice for people to buy in bulk. Why, I don’t know? I mean it’s not even a virus that causes you to empty your bowels frequently! Panic buying was happening at speed. The Supermarket’s were steadily reducing in stock, if we were to go into isolation then I’d have to go early doors.
Tesco Leigh, 6am Saturday. It wasn’t too bad in regards to the amount of people in the supermarket and I managed to get most supplies that would get us through without actually panic buying like most other people seemed to be doing. The meat counters were very limited as were tinned products, bread, hand sanitiser. Still no toilet roll either. It’s ok though, I’d bought some cheap Man United and Wigan RLFC shirts as back up so I could always use those to wipe my arse should I get desperate! My main concern once I had everything in my trolley was going to the checkout. The country had been advised to social distance at least 1m apart. I went to the checkout and this procedure wasn’t being adhered to in the slightest. I decided to circle, almost like an aeroplane waiting to descend onto the runway. The queue was getting larger but still no social distancing. I couldn’t risk standing in a queue where someone would stand breathing down my neck.
I decided to speak to a member of staff to ask if there were any designated checkouts for anyone shopping for a vulnerable person. I explained about Alfie and his condition. I wasn’t expecting any preferential treatment but she kindly requested one of her colleagues to take me to a checkout away from everyone else. Which was a really kind gesture and one very much appreciated.
Self Isolation (Week 1)
I’m now writing one week on from the Tesco big shop. It’s Saturday morning. Alfie’s watching The Descendants on Disney +, Mila-Rose is reading Diary of a Wimpy Kid (very loudly!) and Louise is doing her Body Combat class upstairs in the bedroom (also very loudly!). Louise is finding it difficult as she regularly goes to the gym to do her class but like most places, the gym is closed indefinitely. Home schooling has proved to be a difficult task this week and in fact most days it’s gone out the window as the weather has been strangely quite good this week so we’ve improvised with outdoor learning. Alfie has quite complex learning so he can’t hold his attention to a subject for too long. This is proving to be a challenge so Louise spoke to his speech therapist midweek and she suggested to try to learn him via tasks such as cooking, computer work and colouring etc. So the first task we made our own pasta sauce with hidden veg and with the bolognese leftovers (rationing meals so they go a bit further) we made a Shepherds Pie for the next day!
Other highlights of our week have been our video calls to our family and friends. We’ve regularly had calls with both sets of parents and they’re really enjoying see each other. It’s such a very strange time and you kind of wish that you could all go through it together. As they’re all golden oldies (they won’t thank me for saying that!) but we do worry that they’re ok and they’re not going out and vice versa. Although they’re safe in the knowledge that we can’t go anywhere but have been worrying about if we have enough money/shopping etc. The video calls to our friends have just been such a godsend, we’re lucky that we have the technology to do this to enable us to keep such regular contact. It’s great to see other peoples faces and you almost want to reach into the screen to touch them to make sure they’re real! Mila-Rose and Alfie in particular have loved seeing their friends and you can see it’s making them so happy. It must feel very strange for all children being taken out of school so drastically and told they can’t go anywhere or see their family and friends. This is why we’ve not be so intense with their schoolwork this week, we want to disperse the fear and anxiety of what’s going on in the world outside by basically just having fun. We have enough stresses going on in our lives without these additional add-ons. One additional positive for myself this week is that my counselling has finally started! Albeit by telephone appointment but I’ll probably require it even more during this 3 month period! I’ll into more detail about this in my next blog.
I think this period in all our lives will change people’s outlook on how they not only live their life but also appreciate what they have. We live in a world where we have to have everything, whether it be the latest smartphone or something just to keep up with the Jones’. We’re all very materialistic. My Mum said the other day during one of our calls that ‘God moves in mysterious ways’, now I’m not a church goer or remotely religious in anyway but maybe this is a lesson to us all on how we go about things in the future. I’ve really enjoyed (beyond all the fear and uncertainty) just sitting down together as a family for lunch and tea/dinner. A basic everyday family thing you may think but put into the mix work, day to day stresses (we have more than the average family), bedtime routines etc, it’s actually very rare that we do this simple basic family thing very often. Instead you find you get home from work at say 6pm, spend a bit of time reading with them both then palm them off to bed so you can get something to eat before it’s time for you to go to bed yourself.
We live in a fast paced world, one where if an email doesn’t come through quickly enough we press the receive icon furiously until it finally arrives. Why? Maybe we all just need to slow down a little and take that time to make/bake something that’s not in stock at the shop/supermarket, take the the time to listen to your son or daughter reading at night instead of concentrating on your empty stomach and when it’s going to be filled. Hopefully this is just an unprecedented time of our lives and it will pass without too much hurt but maybe it’s someone just pushing the ‘Stop the world, I wanna get off’ button temporarily so we can reevaluate the way we live and appreciate our loved ones a little bit more.
Thank you to all the NHS staff, Supermarket/Shop staff and other key workers who are helping to keep our country as safe as possible. It’s very much appreciated
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!!