Wednesday, August 26, 2015

Has it really been a year

Well How time flies, it is over a year since I last posted on my Blog, I started this blog as a Daily 
journal in 2011 after being diagnosed with Dermatomyositis and it has been a rocky road over the last  Four years. Lots of High and low spots but I have got right down on my Medication and weaned off of the Prednisolone, so all in all I have not really got much to complain about.

However I think I now need to get back to getting this blog up and running back on line as I continue my journey of Living with Dermatomyositis, so let us get the negatives out of the way first.

The Negatives

I have developed  a problem with my Breathing, this came on in about October 2014 and has been getting worse and although I have had many Pulmonary Function Tests and CT Scans of my Chest a d Lungs and Angio Pulmonary scans they have yet to come up with any positive reason why I am having these problems although It has been confirmed that I have got Early Stage Emphysema

Also I am having to use a Power wheelchair more and more as I find that It is getting more and more difficult to walk more than about 20 minutes with the Rollator, although I still refuse to give up walking unless I really need to, although saying that the Power wheelchair does give me the freedom to travel further afield around Portsmouth and meansI can get down to the city centre, and the seafront . So I purchase a Cruiser 12A Power chair from Cavendish Healthcare in Waterlooville, and it is easy to use, reliable, and also folds up for transport and storage, It has a max speed of 4 mph and a range of 12 miles on a full battery charge.

Power Chair open 
Folded for Storage and Transport
So This is where we are at this present time as far as the progression of the Dermatomyositis is concerned But as well as the Negatives we have the Positives.

The Positives

The biggest Positive is that I am more active in the Myositis online communities, I have re started my  " Filmscan studio" to produce Illustrations, Animations and interactive videos for the awareness of Myositis on a Global scale and with other is the myositis Groups to make it a truly global community.  I have several projects on the go or in the pipeline the two I am working on at the moment is a "Myositis Hub" and also "Wandering Wally.

The Myositis hub is a work in progress and "Wandering Wally" is a blue toy bear on a mission to travel the world  staying with host families, He started his journey no the 4th of October 2014 when he was handed over to "Amber O'Connor" who started up the Facebook Group "Myositis Support Australasia", who with her late Husband Barry, took him on a journey with them around Europe before taking him home with them to Australia, he travelled around Australia spreading the word about Myositis, before heading to Fiji for a month, and From there he flew to Atlanta in the USA arriving there last weekend, so he is now going to be travelling around the USA.

Here is the Photo of me Handing Over Wally on October the 4th 2014  and you can visit his FB page to see all the photo,s and other pictures of Wally on his Global Myositis Awareness Tour and follow him as he travels around the USA and Canada over the following year.

Here is the link.  Wally,s "Global Myositis Awareness Tour" FB Page


  1. This is such a wonderful idea! I also have been living with DM for 3 1/2 years now. Is Wally planning on visiting the New England area in the US by any chance?!!!

  2. Hi. Yes Wally is in the US Now. He arrived earlier in the year and is now in Massachusetts he will be travelling around the US for most of the first half of 2016, looking for host families to stay with.

  3. Where in MA. Is he now? I live in Bradford (Haverhill) MA. Can't wait to see more pics!