Awareness is the Key

After living with Dermatomyositis for the last four years and coping with the slow progression of muscle weakness and Mobility it still surprises me how little is known about Myositis, not only by the public but also by the medical profession.

for the last couple of years after going from a walking cane to a Rollator to a Power wheelchair I decided in 2004 that I needed to do something to raise awareness of Myositis, not only in the Uk but on a Global scale and being a member of several Myositis groups on Facebook, I thought "Why not use Social media to Raise awareness and so enter...................

Wally Wombat AKA "Wandering Wally"

Wally in Southsea by the Garrison Church

Wally was thought up by myself in August/September 2014 and the idea was that he would have a Facebook Page and travel the world meeting people and spreading awareness of Myositis in his travels, He started from outside the Garrison Church in his hometown of Portsmouth . The Garrison Church, was also Known as the "Domus Dei" a historical meeting place and hospital for Pilgrims making there way to Canterbury Cathedral way back in History.

As the Pilgrims relied on the kindness of other People so Wally relies on the kindness of "Host Families" to help him on his "Global Myositis Awareness Journey"

And so the Journey Begins

Wally's Journey began on the 4th October 2014 at High Wycombe in Buckinghamshire, at a "Myositis Friends support group meeting"
At the Meeting were Amber and Barry O'Connor from Australia, Amber was the admin of "Myositis Support Australasia" Now known as "Global Myositis Network" Amber and Barry were over in the UK visiting relatives and also on a tour of "Northern Europe" Amber has IBM (Inclusion Body Myositis)  and they were to become Wally's first hosts taking him on there tour with them and eventually taking him back to Australia, so he could find other host families to help him Spread awareness of myositis around Australia and beyond.

Here I am Handing Wally over to Amber for the start of his journey.

 Wally spent a couple of days in England with Amber and Barry visiting London on the 5th of October 2014 and Brighton on the 6th October 2014 before heading to France on the 7th.

On the South Bank of the River Thames in London

A Rainy day in Brighton

On the 7th of October 2014 Wally, along with Amber and Barry boarded the train at St Pancras to head off on the Journey to France it was a long day leaving London at about 11.00 am and driving at the hotel in Montmartre in Paris at about 9.00 pm.

At St Pancras, waiting for the train

Time for Breakfast

Arrived at Gar de la Est

After arriving they found there way out of the station and made there way to the hotel which was in Montmartre, Paris.

So here Wally is in Paris France and ready for the next stage of the "Myositis Awareness  Journey" I will continue the story on my next post in a couple of days but you can follow Wally's journey over the first year at his Facebook page by clicking Here

Enjoy the Journey. to be continued

The Morning walk with the Rollator around the block

Well Here we are again Folks on a pleasant Sunny Tuesday morning, The Problem as we all know with any mobility problems is the increasing problem of Weight Gain and although we all eat a healthy diet, it is the lack of exercise that seems to be the problem to weight gain.

My Healthy Breakfast.

So That is the problem that I seem to have, since my Leg muscles have got weaker, especially in the thigh and hip areas, and also the diagnosis of early stage Emphysema It means that I am unable to walk as long as I used to so for longer Journeys I use the electric wheel chair ( which I talked about in my last post) so It is important that I maintain a daily walk as long as I am able to with my Trusty Rollator.

My Rollator, after a visit to Photoshop

Anyway I have decided that everyday after breakfast I will take a walk around the block , this takes about 20 to 30 min,s and with the rollator i can at least sit and rest at intervals if I need to. How this will work as Autumn and Winter sets in and the rain gets more persistent I do not know , but I will work something out, as the wet weather plays havoc with my knees as 4 years on Prednisolone , induce Oesteoarthritis in my left knee about 9 months ago and it has also now affecting my right Knee, (never a dull moment with the Myositis). Anyway to get you really bored here is a few photographs of my walk around the block this morning. 

Leaving Home for the shops

This is the view from outside my "Palace" as I look eastwards down the road,  I make my way down past the rows of terrace houses towards "Winter Road" where my local Co-op store is and the chemist. I will need to go into the chemist to order my repeat prescription for next week, and then into the co-op to get my daily paper and some milk.

Winter Road looking North

Well this is the end of Winter Road looking back the way I have just walked from. The Green sign you can see on the left is the Co-op Store and the Chemist is the other side of it. again the road is full of terraced houses on the right and shop units on the left.

Devonshire Avenue Baptist Church

This is the end of winter road looking South across Devonshire Avenue with the Devonshire Avenue Baptist Church on the other side of the traffic lights .

West Along Devonshire Avenue.

From the end of Winter Road by the Traffic lights I turn right into Devonshire Avenue and make my way  Westwards along Devonshire Avenue towards Devonshire Square, This is a wider road than the others with larger houses and gardens at the front.  

Approaching Devonshire Square.

and here we are approaching Devonshire Square, here the road goes either side of a grass island  and I carry on until I get to turn left into  Frencham road which will take me back to my road where I started from.

Frencham Road

This is the last leg of my Morning Walk, Here we are in Frencham road where we have rows of terrace houses in a tree lined street . At the end of this road I turn right into my road and back home for a coffee and the crossword in the paper.

Like a lot of the houses in these side street,s the terrace houses are single Bay and forecourt two or three bed houses, the larger houses like the ones in Devonshire Avenue are Double bay three or four bed houses, and many have front Gardens as well, this shows how the class structure was in Victorian Portsmouth.

The Majority of the single bay and forecourt houses in this area were built around 1900 to 1902 to house the thousands of families of the men who worked in the Royal Naval Dockyard and other military bases in Portsmouth as Portsea (the area around the dockyard) became overcrowded.

So there we are people, hope you enjoyed that little tour of the area in which I live. so at least I got some exercise in, this took me about 50 minutes to complete including five sit downs for taking the photograph,s. 

Hope it did not bore you to much , but it is important to me that I get some exercise in while I can.

So Did I lose any weight ???????

It will take more than one day of exercise to get that much weight off 

The Answer is NO, well what did you expect I will try again tomorrow.

So until my next post probably at the weekend I will say ....................

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