wingedwarrior

23! That is old my cat, Bob, he is up the thread a bit, is only 15!

I am like you ambitiousturtle24, I think I have a full on beamer and the corner of my mouth turns up……. a little bit.

Are there any exercises that strengthen the mouth muscles its effects?
Or even being able to show a little smile, at the mo my smile is a straight line getting saggier and saggier.

Any suggestions.

WW

you read it everywhere, it is like trying to get blood from a stone.

There are incideces of people with cancer being declined esa.

My uncle had cancer and I looked at some of the internet boards and people wherte getting turned down on the simplest things!!!

WW

When people sommetimes doctors as well say that there is no pain in MD I show them this, I have many copies:

http://www.mdausa.org/research/080314fshd_mmd_pain.html
http://www.ncbi.nlm.nih.gov/pubmed/10093064
http://health.groups.yahoo.com/group/fshsociety/message/13925
http://www.google.co.uk/#sclient=psy&hl=en&biw=1366&bih=617&source=hp&q=pain+and+fshd&aq=f&aqi=&aql=&oq=&pbx=1&bav=on.2,or.r_gc.r_pw.&fp=d9ff0d1b43456339
http://www.google.co.uk/#sclient=psy&hl=en&source=hp&q=pain+and+muscular+dystrophy&aq=0&aqi=g1&aql=&oq=&pbx=1&bav=on.2,or.r_gc.r_pw.&fp=d9ff0d1b43456339&biw=1366&bih=61

They are soon quite quiet!

WW

A few months ago I started physio on the NHS. The person who seen me seemed to know a bit about muscle disease and the way FSHD impacted the upper back and shoulders. I have very limited range in my upper body, as I have severe bilateral winged scapula which means my arms have not been above shoulder height, even less, for a very long time, so I was very stiff.

She passively moved my arms above my shoulders, it felt, well good and damn sore at the same time! . After the session I could not move for a day or so even though it was only basic stretches that I was doing. Next session was 2 weeks later which I was a bit miffed about.

She gave me very simple stretches to do. Basically try and sit up straight keep your neck tall and then pull your chin to the neck. Do this 3 times a couple of times a day. The first few times I was in complete agony but it then got easier to do, still very sore but I could feel the benefit. I was not so tight in my upper back.

The other one was to try and use the muscles I have left in my back to try and pull the shoulder blade back into the body. This is where it got really hard. I literally have no muscle in my upper back and the ones I do have are so overworked that this was near impossible to do. I thought the neck stretches where hard! I could not do this exercise without intense pain and fatigue so I stopped.

The next session the physio said she could see that the shoulder blades where sitting better. The ROM in my left shoulder was marginally better but the right side there was no change. Once again she stretched my arms above my head, I cannot describe how good this feels, if also sore. Now for the next stretches I have to use one of those gym balls, a big ball filled with air. Put the ball on a bed or the sofa place my hand on the ball and move my hand and arm backwards and forwards and to the side. This is where things get complicated. The amount of pain after doing these these stretches was unbelievable.

I think that when the pain is that bad the stretches are doing more harm than good. As we know there is a fine line between doing good and doing damage. I had to stop doing these stretches all together and because now my next appointment is not for another month I can not really talk to anyone about what I should be doing! I thought that I would be having physio every week so I could be monitored, but it seems like they are treating me like I will get better after I have done there standard amount of sessions that a person with a sprained ankle gets.

The other thing is that the physio is only focusing on my upper body but my stomach muscles and left leg muscle are experiencing muscle wasting. I have started to get foot drop and finding it extremly difficult to go up stairs, even walking on flat surfaces I seem to trip up over the tiniest thing. I did mention this but I get no response really about my foot. :evil:

Nearly finished, sorry for the long post
I have a leaflet about the Neuromuscular Center and was interested to see what the outcome of Morgan’s visit was. My regional rep from the MDC also recommended the center but I want to wait and see if it is worth going all that distance. I was also recommended hydro therapy but the nearest hospital that does it is nearly a two hour drive away and an hour in the car does my back in and cant walk for days.

Just needed to sound off thanks all
WW

Pearl Jam Unplugged is the order of the day.

http://www.timsah.com/Pearl-Jam-MTV-Unplugged-State-of-Love-and-Trust/eTdTQwJlKJa

To watch the full show go to http://www.totallyfuzzy.net/ourtube/pearl-jam/mtv-unplugged-full-show-video_52c69369b.html

If you like Nofx and the like (80’s 90’s punk) then there are a lot of free mp3s you can get of there website. You cant dowload them but can listen online:

http://www.fatwreck.com/audio/
http://www.fatwreck.com/media/

Dischord records radio player (70’s 80’s and 90’s punk)
http://www.dischord.com/media

Dance music with a slight twist:

http://www.wrongmusic.co.uk/wronglab

just click and listen

Hi there Felicity, welcome

I don’t have Beckers, but there are a few people on here that do and are best suited to answer your questions. But regarding the specialists appointment, I would take that appointment if only to put your own mind at rest. That is what they are there for. They can rule out one thing and send you, if needed, to the right/next place.

Take care WW

Nice sunny day today and for some reason feeling nostalgic so I am Listenig to Alice in Chains

http://www.youtube.com/watch?v=qNf1hRkVnM4

Had some good times listening to this band.

I am also mixing in a bit of Aphex Twin, just to keep me awake :twisted:

http://www.youtube.com/watch?v=5Az_7U0-cK0 this video is worth a watch, but be warned it is slightly scary! :twisted: