84 Days Later (part 9)

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?

Shielding

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.

Enjoy the rest of your week and remember…

STAY ALERT. GO FOR A DRIVE. CHECK YOUR EYESIGHT.

Kieron

#duchDad

84 Days Later (part 8)

Untied Kingdom

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.

Lockdown

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.

Home schooling

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!

My Interview with Becky Want on BBC Radio Manchester

Leighnix Nights

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!

Enjoy your weekend!

STAY HOME. STAY SAFE. KEEP YOUR DISTANCE.

Kieron

#duchDad

84 Days Later (part 7)

Defying the odds?

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

Frustration

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.

New logo

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 Manchester interview

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.

Stay Home. Stay Safe. Stay Distant.

Kieron

#DuchDad

84 Days Later (part 6)

Breakfast of Champions

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!

Half Time

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.

#HappyBirthdayAlfie

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!!

Joe.co.uk

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…

Steroid treatment

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.

May Goals

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!

Kieron #DuchDad

Please follow (and share) our Action4Alfie social media pages…

Action4Alfie (@Action4Alfie) | Twitter

https://www.facebook.com/Action4Alfie