Monthly Roundup September 2019

Welcome to our Monthly Roundup September 2019.

Autumn and Health

Autumn has hit rather quickly, with temperatures dropping and lots of rain!  Cold weather isn’t great for us with Duchenne.  Extra layers mean it takes a lot longer to be dressed and once outside we can get cold very quickly.  Driving a wheelchair with numb hands is no easy task, also making sure our wheelchairs don’t get wet can be difficult.   None of this stops us doing things though!

In this season we also have to take extra care of our health.  Flu is something we need to avoid, along with other bugs, these can lead to serious complications and hospital stays.  If you are regularly getting chest infections and have Duchenne we highly recommend you ask for a cough assist machine.  We have produced a very handy video on how to use the cough assist below.  As always please consult a medical expert on how you should use any medical device, everyone is individual.

Guest Posts

This month we have two guest posts, we’ll start by hearing from Mark Chapman or chair of trustees.

Mark

On September the 12th in Glasgow I hosted our DMD/SMA forum event in conjunction with Prince and Princess of Wales Hospice, MDUK and the Scottish Muscle Network. After a last minute change of venue this proved to be very successful day with many in attendance, we received lots of positive feedback afterwards. Alongside one of our trustees, Sanjeev Mann I opened the event to welcome everybody with the aims of the day:
  • To look at what works and what doesn’t in enabling you to live a good life with a complex condition
  • To share experiences and information from those living with complex conditions and those supporting them
  • To discuss what changes and improvements we would like to see with service provision
  • To meet others in similar circumstances
Sanjeev followed this by briefly sharing some of his experiences as an adult living with DMD, including his time at university and some of his recent holidays. He told us he joined DMD Pathfinders as he recognised the benefits of the peer support and advice we provide, he said our charity gave him confidence and leading his own adult life, is one of the reasons he started going on his own independent holidays without his parents.
We started with a presentation from Sheonad MacFarlane titled Making Everyday Count.  This was a research project she carried out looking into the quality of life of adults living with DMD. Kieran, an adult living with SMA then talked about his experience of receiving emotional support from the hospice and the difference this made in improving his quality of life. Bryan Purdue and his consultant Dr. Scott Davidson then gave an interesting overview of ventilation and the range of equipment. Gavin Neate from Neatebox then gave us a fascinating overview of their Welcome app, “Welcome” is designed to improve the interactions between customer service teams and disabled people, by making staff aware of the specific needs of their visitors in advance of their arrival.
It raises the confidence of both the visitor and customer service team and helps to build lasting relationships.  Before lunch Sheonad provided a quick update on access to Spinraza for those living SMA.
After a tasty lunch and a chance to meet and catch up with others Fiona Wyilie gave us an overview of her work with the hospice and how they support young adults with complex conditions and their future plans to develop respite support for these clients.  They found this group requires a different model of support from what has traditionally been provided by adult hospices. Paul McGiinley who received support from the hospice continued this with a short video of his experience of using their services.  It clearly has had a very positive impact on his quality of life.
This then led us onto our workshop sessions, including Financial & Practical Support from Jackie Munro, advocacy officer MDUK;Assistive Technology from Graeme Innes at Smartbox and Physiotherapy sessions from Marina Di Marco at the Scottish Muscle Network.
We ended the day with questions and overview.  I am pleased to say the event was received very well with many questions and positive feedback. Many thanks to everyone involved who made this day a great success. I hope we can continue our work with the organisations involved
Next we hear from our trustee Benjamin James.

Benjamin

September has been fairly busy for me, completing my masters in science communication at the University of Sheffield and moving back home for good. This marks the start of a new chapter in my life.  As I move back home, look for work and look to employ two new PA’s to support me whilst at home. This is something I have started advertising for and whilst I have support from the Surrey Independent living council (SILC), it will take time to advertise, interview and employ PA’s, but I am definitely looking forward to finding the right people to work for me.

As you can imagine I needed a break after a year of studying so having a holiday in Wales towards the end of September was a great chance to get away and refresh. Luckily the week we went was sunny which makes a change from typical wet Wales!

Benjamin James sitting outside a castle for our September monthly roundup

I am also hoping to start working for a healthcare communications company, who I have worked with for my dissertation and helped on a number of projects. As you can imagine this takes time, especially as they are trying to create a role for me. I will also be speaking at a conference in Barcelona with Open Health in November. This will be the first time I have been on a plane in my powered wheelchair since getting it in 2015, which is a bit daunting, but at the same time exciting.

I am looking forward to entering the world of work and employing PA’s to support me so I can live a fully independent life whilst at home. This will be my focus for the next few weeks.

Collage of photos from Wales from Benjamin James for our September monthly roundup

September with DMD Pathfinders

This month we headed to Helen & Douglas House to meet with some young lads with DMD, you can read Mitch’s post about it in the Social Saturday post.

 

We also held our first online Movie night, this was great fun with lots of discussion and fun quizzes.

One of our Trustees, Sanjeev, produced the very funny and informative video below for the BBC.

Another of our trustees, Daniel Baker, did a guest post on his trouble finding suitable housing for Habinteg.Daniel Baker

And here’s another video, this one from another trustee, Phillip Carroll, on travel and the 2019 PPMD Conference.

Coming Up

We have various events coming up over the next few months, here are just a couple of them.

Mitch is hosting a board game night in Bristol, so if you are in the area please come along.

board game night October 26th 2019 Chance and Counters 20 Christmas Steps, BS1 5BS Bristol, United Kingdom

You can also catch us presenting various sessions at the 2019 Action Duchenne International conference, we hope to also livestream our sessions, technology permitting.  The conference will be held between 15 & 16 November 2019 at Jurys Inn, Hinckley Island.

Action Duchenne logo

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.