Monthly Roundup August 2019

Here’s our Monthly Roundup August 2019, better late than never!

Summer seems to be winding down and here at DMD Pathfinders we are starting to look at upcoming events we are involved with.  We hope to hold some sessions at the Action Duchenne International conference again this year.  Next month we’ll be heading to Helen House in Oxford, to attend one of their Social Saturdays.  We’ll be at the DMD/SMA Forum on  September 17th.  We also have an online movie night planned for September 30th, be there or be square as they say!

August with DMD Pathfinders

This month our development worker Mitch held a social meet-up in Bristol, which was a great success.  We are looking forward to holding more in the future.

DMD Pathfinders were also happy to meet with Carl Joy from Charlton Farm recently.   We look forward to working with Children’s Hospice South West more over the next few months.  You can read more about the meeting in this blog post “Working with Hospices: My Visit to Children’s Hospice South West“.

Mark Chapman our chair of trustees recorded an interesting interview on relationships which you can watch below

Guest Posts

We are lucky to have a couple of additional contributors to our roundup this month, we’ll start with a story from one of our newer trustees, Sanjeev.

August was a  busy month for me and the aim was to enjoy the last few weeks before going back to uni for my second year of my part time masters in media.

Let’s get to the highlights. At the beginning of the month it was filming time! I recently managed to get a freelance do at the BBC making videos. The first was about the silly things people have said to me when I’m out. For example comments like ‘it’s good to see out’ that just really irritate me. Hopefully the comedy sketch can highlight the issue in a comical way. It was a busy day of filming with a number of friends who I’d asked to act in my short film. Hopefully it’ll be released in the coming weeks. Look out for it on BBC The Social.
Another highlight was seeing one of my favourite bands the Foo Fighters at Bellahouston park in Glasgow. It was a brilliant day apart from the heavy rain here and there but it somehow held off for the Foos! Check out some pictures:
Sanjeev watching the Foo Fighters

Next we hear from Mark our chair of trustees.

August is usually a busy month for me with the Edinburgh Festival in full flow! It can always be tricky trying to balance work with a busy social schedule this time of year. I managed to get all my meetings and odd ends out of the way at the beginning of august and had tickets booked for a range of shows. I started off with seeing Shooglenifty who are an excellent modern Scottish folk fusion group.  One of my ex-PAs perform with them and I had a great catch-up with him afterwards. I then had a great time at the Edinburgh book festival seeing three of my favourite Scottish crime authors, Chris Brookmyre, Val McDermid and Ian Rankin, I often enjoy listening to audiobooks as I find it easily accessible through using www.audible.co.uk .

Unfortunately I took an unexpected chest infection and had to cancel the rest of my festival, one of the downsides to Duchenne if you don’t take proper care of yourself, however it is still unusual for me particularly in the middle of the summer! I’m only now recovered.

I’ve also been going through the slow and difficult process of getting a new electric wheelchair through NHS Wheelchair Services.  Although it is nice to get a new wheelchair I find it very frustrating trying to get everything properly set up for my comfort and complex needs, it can often take months of appointments until we have a chair that is satisfactory. In Scotland you are provided with an electric wheelchair on the NHS if you qualify.  Unfortunately in my area they are only able to offer one chair without much choice.

I’m now very much looking forward to our combined event in Glasgow on the 17th of September.  Although I’ve just been informed that due to unforeseen circumstances we had to change the venue. It’s now at Tollcross International Swimming Centre, 350 Wellshot Road, Glasgow G32 7QP, from 10am to 4.30pm. Apologies for any inconvenience this may cause. You can still register for the event at https://bit.ly/2Xa26mD

Mark Chapman

Our friend Andrew Duffy was also at the Edinburgh Fringe doing a gig!  You can see a video below.

 

Holidays

It was also the time for holidays.  Our CEO Jon travelled to Amsterdam for the weekend and Mitch went to Majorca for a few days!  You can read more about Mitch’s trip in his blog post “Trip to Majorca“.

Beautiful blue dusk sky looking out over the beach in Majorca Monthly Roundup August 2019

Sanjeev Went on a trip to beautiful Ireland, you can read about it in his words below.

Finally at the end of August it was holiday time! Me a friend and our two assistants decided to go to Belfast for 5 days. To avoid the pallava of flying we decided to drive and take the ferry from Cairnryan. It was a fun few days with plenty of drinking at late nights! One day we went to the Game of Thrones touring exhibition. There were plenty of cool things in the show like swords, clothes and of course the throne! It lasted around 50 minutes and it’s worth a visit although I did expect it to be bigger with more things from the show.
One another day we went on a drive north from Belfast on the coast and it made for some great views and a nice walk. The benefits and taking a car on holiday! We then ended the holiday with a night out at a local pub and club. It was a fun and to the week. Here’s some photos:
Sanjeev in Ireland
Sanjeev a the Game of Thrones tour

 

Social Survey

DMD Social events survey for Monthly Roundup August 2019

Also please fill in our social events survey to help us find out which type of event you would find most enjoyable and be likely to attend.

Helping DMD Pathfinders

You can help support DMD Pathfinders by donating at Virgin Money Giving, interacting with us on FacebookTwitter and YouTube, and using our social media hashtag #DMDAdultLiving when sharing stories of adults living with Duchenne Muscular Dystrophy.  You can also contact us directly at info@dmdpathfinders.org.uk or 01273 252555.