Monthly Roundup July 2019

We hope you are all enjoying the sunshine and summer in general, this time of year personally makes me want to get out and do more!  First up this month is a catch up from DMD Pathfinders chair, Mark Chapman.

Mark’s Catch up

(written by Mark Chapman, Chair of DMD Pathfinders)

I started this month by having a trustee meeting which included some of our new trustees. Without going in to detail we had a very successful meeting with lots of feedback, contributions and new ideas. Our next meeting will be in around 6 weeks time and I hope to see our trustees involved in a few things with the charity between now and then.
Mitch Coles, one of our development workers interviewed me about relationships where I enjoyed a very open and honest discussion. I also recognised the benefits of companionship, while highlighting the importance of enjoying your own company and that you don’t need to be in a relationship to be happy.
You can see the interview here: https://www.facebook.com/watch/?v=441291993394072

Mark Chapman relationships interviews

A few weeks back, Mitch interviewed Mark who talked openly about relationships. He recognised the benefits of companionship, however he highlighted the importance of enjoying your own company and that you don’t need to be in a relationship to be happy.

Slået op af DMD Pathfinders i Onsdag den 31. juli 2019

I’ve also been getting out and about enjoying the summer weather. I tend to venture on to the bus when it’s warmer weather, all the buses in Edinburgh are wheelchair accessible (there’s controversy over the new larger buses having a smaller shared wheelchair and buggy space). One recent trip was into town for a friend’s birthday lunch and because it was a lovely day I decided to walk back with my PA. I had an enjoyable wander back through town, where I come across a few statues on the Oor Wullie Bucket Trail https://www.oorwullie.com/ (if you’re Scottish you’ll know who he is), then along the canal path back home. A few swans, ducks and lots of cyclists on the way, careful under the road bridges where it’s narrow, cobbled and dingy!
With my friends I enjoyed an evening outdoor concert at Edinburgh castle to see The Proclaimers, I’ve been a huge fan since their first songs 30 years ago! I was well prepared as heavy rain and high winds were forecast. I was well wrapped up for the imminent weather as being outdoors at the castle is like being on top of a mountain! We all had a fantastic time singing and dancing around to lots of their great songs from over the years…and that rain mostly held off.
On another beautiful day I took a leisurely drive with my PA to the Queen’s Forest Park, which is a National Park in the Trossachs, about an hour and a half from Edinburgh. https://forestryandland.gov.scot/visit/forest-parks/queen-elizabeth-forest-park  The forest lodge up above the town of Aberfoyle is wheelchair accessible with a disabled loo and parking, it’s the perfect spot for a cup of tea or a picnic with some wonderful panoramic views. I also took a wander around the wheelchair accessible trail to see the waterfall, I found the forest relaxing and peaceful among the trees and wildlife. Apparently Rob Roy hid in a nearby cave to escape his pursuers. On the way back we took a drive over Duke’s Pass, a very windy road with spectacular views across the Trossachs, we had to watch out for the huge tourist coaches! I can highly recommend a trip to the Trossachs and the Highlands, it makes me want to have a holiday there.
Come and join us at the Golden Jubilee Conference Centre, Beardmore Street, Clydebank G81 4SA on Tuesday 17th September for the DMD/SMA forum event we are holding in conjunction with MDUK, PPWH, Scottish Muscle Network and NHS Scotland. To register click on this link: https://bit.ly/2Xa26mD
I am now looking forward to the madness of the Edinburgh Fringe and Festival which is happening throughout August!
https://www.edfringe.com/
https://www.eif.co.uk/
https://www.edbookfest.co.uk/

 

Daniel’s Catch up

(Written by Daniel Baker, Trustee of DMD Pathfinders)

I have had a busy month too enjoying this weather.  Only needing to wear a T-Shirt makes getting dressed and up take half the time, it also means my carers have to pull me around less while getting multiple, sometimes tight, layers on over my arms and legs which have major contractures.

As a keen photographer I like getting to interesting, new places so I can get unique shots. I started the month visiting Black Park near London, followed the next week by West Wycombe and Worcester.

Daniel Baker on a stone bridge at West Wycombe Park

I met up with Mental Health trainer Mark Hashimi.  Whom I had a nice with chat about some of the material I use when giving a mental health workshop with a local charity, Barnwood Trust.  After this I had an informal meeting with the CEO of Muscular Dystrophy UK Catherine Woodhead and the South West Regional Development Manager Nicole Beebee, at the local wildfowl and wetland trust.

Daniel Baker with CEO of MDUK Catherine Woodhead and Regional Development Manager Nicole Beebee

Daniel Baker with CEO of MDUK Catherine Woodhead and Regional Development Manager Nicole Beebee

The highlight of my month was attending Comiccon in London and meeting Karen David (Galavant, Fear the Walking Dead, Criminal Minds), Sophie Aldred (Dr Who, Playdays, Dennis and Gnasher) and Adam Baldwin (Firefly, Chuck, Full Metal Jacket).  I always cosplay for these events and this time dressed as medieval knight Galavant, everyone loved the outfit, especially Karen David (whom my carer informed me I was flirting with, I think it was more Karen flirting with me in reality though).

Collage of pictures of Daniel Baker at comiccon
It wasn’t all fun and games for me this month though, I had a reminder I’m not really Superman.   At the end of the month my GP visited as I had extreme stomach pain, he quickly sent for an ambulance.  I had various tests and scans before being admitted to the surgical ward!  Luckily the surgeon visited shortly afterwards, I had a pseudo obstruction, but he decided I would e better off at home and I was discharged without having to stay in overnight.

Jon’s Catch up

(Written by Jon Rey-Hastie, CEO of DMD Pathfinders)

At the beginning of the month I gave a presentation to pharmaceutical company Santhera about my experiences of respiratory decline and use of ventilation. I spoke about the journey from first starting with non-invasive ventilation overnight, to becoming increasingly dependent on it, until a few years ago when I started using it 24/7. The talk was intended as an introduction for staff at Santhera who were new to DMD and had recently joined the team, and was very well received.

Our new development workers Mitch and Tyran have been settling in to their roles well and we have been working together to plan a number of events over the next year. This has included planning for the Action Duchenne conference in November, a key feature in our year for connecting with adults with DMD and families.

For me, much of this month has been focused on fundraising, as we seek to secure grant funding to continue and expand our work. Running a charity like DMD Pathfinders and doing what we do requires a significant amount of work behind the scenes, and funding is essential to allow us to continue. As well as grants, we depend on community fundraising. While we don’t fund research or promise a cure, we are the only charity which invests every penny we raise in our work to improve the lives of young people and adults with DMD. So if you’re able to fundraise, we really need your help and would love to hear from you!

Finally, I’ve had the pleasure of spending the last few weekends meeting new adults with DMD and enjoying a great day out. It’s amazing to connect with others in similar situations and awesome when you don’t have to worry about whether what your friends want to do will be accessible or not.

 

Social Media and Blog Posts

Mitch Coles our development worker visited Charlton Farm (just outside of Bristol), for a meeting about how DMD Pathfinders can work together with Children’s Hospice South West to benefit those with DMD.  You can read about his visit in this blog post – Working with Hospices: My Visit to Children’s Hospice South West.

Some Posts from our Facebook page


And some posts from Twitter using our hashtag #DMDAdultLiving

image of a twitter post which says Off to see the cardiologist for my annual check up! @NHSGGC QEUH. Appointments like this are part of life with dmd and are always a wonderful adventure! #DMDadultliving @MDUK_News @DMDPathfinders @MDUK_CatherineA twitter post Jul 18 I'll be at #BristolHarbourFest this weekend, what will you be upto? #DMDAdultLivingA tweet saing Trying to relax in the park before meeting with a possible new care provider #DMDAdultLiving ift.tt/2O2KTZ0

Social Meetup

social meetup flyer 31/8/19? Come have a drink with us at @No1Harbourside

If you are in the Bristol area on the 31st of August why not come have a drink and chat with us at No. 1 Harbourside?  You can sign up and find more details on the Facebook event page.

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.