Sunday, September 27, 2015

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

Tuesday, September 1, 2015

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 ....................

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

Monday, August 18, 2014

Where did Saturday and Sunday Go

So Here we are on Monday, Where did the weekend go to, I did very little apart from sleeping, resting and some graphic work on the computer, and before you know it we are at Monday and the start of another week so all I can say is.



Turning the clock back to Saturday Morning. Not a bad nights sleep on Friday night, woke a couple of times during the night but was up by 9.00 am. Spoke to Pauline and had breakfast and then just checked on Facebook, apart from that not a lot happening, so a nice restful morning. My Son Gervase phoned to say he will be coming round about lunchtime as he is going to the first home game of the season  for Portsmouth Football Club at Fratton Park and they are having a fans fun day in the stadium car park so he will take me over to see what is happening, as it is within Rollator distance to where I live.
Gervase arrives at about 1.15 and we have a chat and then I walk with the Rollator over to Fratton Park with him to see what is going on.

Fratton Park from the Main Car Park.

Some of the fans at the Fun Day
The Pompey Bus at the Fun Day
The Pompey Shop, Fratton Park
It was not a bad turn out at the Fun Day, and when you think that 2 years ago "Pompey" were on the brink of Liquidation and going out of the English football league after getting into so much debt after some successful years in the Premier league and winning the FA Cup.
It was only through the supporters ands the Pompey Supporters Trust that we survived in league 2 of the football league and is now owned by the supporters.
Pompey won the match against Cambridge 2 - 1, so a good start to the season.

Play up Pompey
After we have been at the Fun day we make Our way back home, we were only out for about 40 minutes once indoors I get myself some lunch ready and Gervase heads back over to Fratton Park to watch the match, as he is a season ticket holder, We have been supporters of Pompey for many years, I remember my Father Taking me to fratton park when I was about 6 or 7 years of age, That would have been in about 1949/1950 and I have been supporting them ever since, through all the bad and good times, I started taking Gervase to Fratton Park when he was about 9 years of age in about 1990.
 After the Match Gervase came in and we had a nice chat about the match, as I listened to it on the radio and then he made his way back home to Leanne, and I settled down to watch some TV and do a bit of Graphic work and then dinner about 7.30 and bedtime at about 10.00, so all in all a good Saturday.


Sunday started with a Thump in more ways than one, I had woken at about 6.30 and as usual I go and make a coffee to take back to bed, Turn on the Radio and Open the bedroom Window to let some fresh air into the room as I get very Dehydrated during the night, and being in a ground floor flat I cannot have windows open at night for obvious reasons, Anyway I must have dozed off because the next thing I know I am awaken by next doors Kitten leaping on to me from the window sill.

I am always being pestered by Cats
Anyway that was the way my day started, Once i had got up and gave the Kitten from next door a drink of water and opened the back door he was happy, he just went up to the end of my courtyard and sat there licking himself and looking at me as if to say " Well that got you out of bed" after that shock to the system I needed a good strong Coffee.

My goodness I needed That 
Well once I had got my self sorted I got some breakfast, Text Pauline to let her know that all was ok with me, Pauline phones back and we have a chat and then I go and weigh myself before getting washed and dressed and settling down to check out Facebook.

Nothing wrong with my weight.
Well once I had got myself sorted It was time to head of down to the paper shop and get my daily Paper, I met one of my neighbours out taking his dogs for a walk down the Park, so I headed of down to the park  with my rollator, we had a nice chat but my muscles soon got tired so after about twenty minutes I headed back home, but it was an enjoyable half hour .

Out with my neighbour with his dogs
Once back home I just spent the rest of the day Resting and listening to the radio.
I got dinner about 7.30 Pm a nice Moussaka,  and then spent the rest of the evening in the recliner watching a couple of recorded episodes of "Highway To heaven"

Highway to heaven with Michael Landon and Victor French.
And so ends Sunday, off to bed at about 10.30 last night and slept through pretty well until this morning


Well This morning started pretty well, It is a lot cooler her on the coast today, apparently we have a cold front moving in from Scandinavia so that will make life a lot more comfortable for me and my walking, I find it hard going walking when it is to hot and humid, a cool breeze makes it far more comfortable for me.

As I said in Fridays Journal, Pauline had made me a Bib for when I am eating.

Franks Bib for mealtimes.
The reason behind Pauline,s needlework skills is that she does all my washing and ironing for me, {She takes The washing home on Wednesdays after she takes me shopping and Gordon takes it on Friday when he goes home to Pauline after Helping me with my Bath etc. And needless to say Wednesday,s washing is returned all clean and ironed on a Friday and the same for Friday,s on a Wednesday, } Anyway as I have to have a lot of liquid with my food due to my swallowing not being 100% and also that my Hand, Mouth and Cutlery co-ordination is not 100% I tend to get food down the front of my shirt, and I think Pauline is getting fed up of having so many shirts to wash and iron, I am all right with Sandwiches, Drinks, ice-cream, cakes etc but Meals are a different matter.

Calm down Pauline
Anyway one I had had my breakfast of cereal (Wearing my posh Bib), I go and get remedy and then head off down to get my Morning Paper, In take a walk around the block and that is enough for me so back indoors to get a coffee and sit and read the Paper and do then crosswords.

Well Today has been taken up on writing this journal and apart from having lunch , I have not done much else, apart from looking into setting up a fun Global Myositis Awareness website, Just turning ideas over in my head at the moment.

Anyway it is now 5.00pm and it is time I got this Journal posted so  as there is not a lot happening today So Until the next Journal on Thursday I will say..................

Friday, August 15, 2014

Another myositis Roller Coaster Ride.

So believe it or not We are at Friday, My last Journal was on Monday so where has the week gone, well it has been one hell of a ride. Good job I know what was happening and go grab hold for the ride in the early stages.

A Typical Roller Coaster ride
For those of you who read my Journal on a regular basis you will see that from Wednesday last week up until last Sunday, I was chugging around like a Formula one driver on my rollator and it was not long before the myositis got really pissed of with me and decided take back control again, ( I think my Myositis is a bit of a control freak),

Do Not Let Myositis Win
Anyway as you will see from Mondays Journal I was feling a bit fatigued, and come Tuesday I could hardly keep awake, I ached all over especially my upper legs and thigh,s and so I decided that I needed to up my Prednisolone from 5 mg every other day to 10 mg a day until the weekend to halt it in its tracks, I have been slowly tapering down on my Prednisolone and am on 5 mg alternate days, but at that low dose I just can not function so I am hoping that when I see my Neurologist on the 18th September that he will allow me to increase my prednisolone back up to 10 mg daily as that is a dose I can function on, and also I need him to arrange a Adrenalin Insufficiency test to see if my Adrenalin gland is producing Corticosteroids after being so long on the Prednisolone and taking my age into concideration.
That Question got my Consultant Confused
The Other Thing I am waiting on is to see my General Practitioner on the 2nd of September to see if she has (1) got the result of the x-ray on my Knees and (2) to see if she has found out why my Calcium Supplements were stopped at the end of 2012, and also my B12 supplement stopped, Both were stopped by my dietician and my GP cannot see why they were stopped seeing as I was on high dose Prednisolone at the time.
My General Practitioner  (GP)
 The dietician stopped my Calcium and B12 when I got back to eating a soft lump,s diet after being almost 10 months on a Puree diet after being treated for Chronic Dysphagia, after having swallowing problems which was the start of the Dermatomyositis Journey, she also stopped my Vit D and Vit C and Strontium Ranelate at the same time.
Could this be a sympton of Dysphagia Doc
I bet you are all sat here intrigued and thinking good grief don't frank rabbit on, well "yes", "yes I do", it helps to pass the time, but seriously it is amazing how Myositis can take you from a high spot to a low spot in a matter of a day, anyway after sleeping through most of Tuesday I slept pretty well on Tuesday night and was feeling brighter on Wednesday Morning, although still having trouble with my legs and so I phoned Pauline to see if she was happy about taking me out shopping as I could not do to much walking so would need to be in the wheelchair most of the time but she was happy to take me in the wheelchair and Gordon came shopping with us as well so in the end it was a nice day out down the city centre, Gordon pushed me in the wheelchair around town and as usual we got a Taxi there and back so it was a good day and we had a nice Coffee in the cascade shopping centre as well.
Gordon and Me sitting in the Precinct in the City Centre.
Mine and Pauline,s coffee,s in Boswell,s in the Cascade shopping Arcade.
so there we are Wednesday was a good 3 to 4 hours out in the Sunshine in Portsmouth city Centre, I think I made the right decision to stack with the wheelchair today. The afternoon and evening went well and again apart from watching Tv and drinking coffee nothing much happened, went to bed at about 10.30 and had a not to bad night, and thursday I was feeling so much better although still feeling achey in the legs and knees, I was not feeling so fatigued, and so I took 10 mg of Prednisolone again this morning and it is obviously doing the trick, again it was a day of rest apart from the phone call to the Council Tax department  This is a long story but I will give you the shortened version, this is where my tolerance or lack of shows up.

Although I consider myself efficient in the use of technology I refuse to be dictated to by Public offices to insist that I use technology to pay my Due,s. I have no issue about Paying my Council Tax, but as I am paying the local Authority for a service I expect to receive a service, therefore I will pay my Council tax Monthly in Advance in Cash at the local Civic Office, some times though I find that it is not possible to get there so I phone up and pay over the telephone by giving details to a person in the Local Tax office, However due to the cut backs in the number of staff it is getting more difficult  to get either connected or to speak to anyone, however that was the case this week, as it happened I missed last months Payment so this week I get a letter saying I am in arrears for July and August so I think OK, I will phone up and pay, and here is where the fun starts and my tolerance wears thin.
Not a Happy Chappy
Well I am on the phone waiting over 45 minutes before someone answers and while waiting I keep getting recorded messages saying " you can contact us on our email @" "You can pay on our automated phone line", etc, anyway eventually I get a advisor who has obviously had a bad day but her "biggest mistake was by talking it out on Me." her reply to me saying that "I had a letter saying I was two months is arrears  and it was because I was  unable to get down to Pay so I would like to pay it now was"well you could have paid it by check, Well if I can not get out to go down to pay at the office, I cannot get out to post a letter. I think that upset her as She put the phone down on me so I will go in and pay at the office on Wednesday when I go shopping with Pauline.

All I wanted to do was pay my Council Tax by Debit card, If I pay online by Credit card they put an extra charge on the card, and I refuse to pay by Debit card on line as you get more protection for online payments by using a credit card.

Oh well I really must not let people wind me up but she started off on the wrong foot and the wrong attitude.
That was hard Work
Well the rest of the day was spent resting before having dinner at 6.00 and going down to see my son Gervase and his wife Leanne for the evening , Leanne,s dad "Dave" was also there and so were 4 of the cats
After a good Evening and I was back home by 9.30, and in bed by 11.00 and had a decent nights sleep and so here we are at Freaky Friday.

Woke at about 8.00 am As Gordon will be down this morning about 10.00 to help me with my Friday Bath , I have my breakfast and then take my 10 mg of Prednisolone, I must say that I am back almost to where I was on Saturday, so I will drop to 5 mg daily for the weekend and then on Tuesday back to 5 mg of Prednisolone on alternate days..

Well Gordon arrives at 10.00 so we have a coffee and then he Gives me a nice Haircut, and I must say it feels so much better to have some of my hair trimmed as it is so fine these days and I lose some every time I comb it.
Thank you Gordon

Once I had had the haircut, Gordon helps me into the bath and also helps me out as well, and then I feel all clean and Sparkly again, it feels so nice after having a nice soak in the bath, during the week I have strip washes, as I cannot get into and out of a bath that easily even though i have a bath step, rails and seat.
Enjoying a Bath
once I have had a bath we have a chat and I get shaved and dressed and then we go out to get a KFC and also some milk and honey and a daily paper, once back home Gordon makes his way home and I settle down to take my Methotrexate and then start to get to work on my daily Journal for the lsat 4 days.
Time for Methotrexate
well that is about it for another week, Back to 90% functioning so time to get this journal posted and then a nice restful night of listening to classical music and reading a bit about Portsmouth in World war One. so until the next time I will say