h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

In a land of confusion, , , and sort of place... Are you now? So was I, and to a degree, I am still....

As mentioned in my previous entry, I had a good festival, although with no fiddle playing due to tennis elbow ! Well, the last vestige of that didn’t depart until last week, so it is only now that I can use my right hand for with any degree of normality. It has restricted both work and play, especially as my work involves a great deal of PC work. I must admit I have become quite adept at typing left handed!!!

During September I worked a number of extra days in September, as I’d taken days a number of days off earlier in the year, so quite a full-on month with little spare time. Luckily I also had days owing so I grabbed five days off from the 19th of October for a little R & R in Broadstairs, at my Dad’s. It would give me more opportunities to get more photos for my, Uni project, that is taking forever, as it keeps growing!!! Unfortunately the weather conspired against me, and was very and . I still managed some decent ones, but with very oppressive, overcast skies. It was still a good break except for one event. I managed to take a tumble, crack my head open, break my nose and possibly knock myself out. I came to with my Dad standing over me saying ‘What the have you done?’ while I was clasping a bloody hand to the crown of my head. Luckily Dad grabbed a and held it on my head. , like all head wounds it soon stopped bleeding, but made a mess of the floor, and even more of a mess of the . I still don’t know what happened, or how I came to cut my head. Must have been the door handle, but that seemed impossible. The nose took three weeks to settle, but it appears only the septum, rather than the bone, was damaged. So my looks weren’t improved any. to disappoint. Anyway, nose apart, I was right as rain the next day, except from an annoying scab in my hair. My head is, as my German teacher said after breaking a ruler on it, made of concrete!!!
I then returned home , with a nice steady flow of gigs to look forward to, and a party to organise. Imagine my annoyance when I took another tumble. This time caused by some workmen doing repairs to the pavement outside my local... and I did it heading for the Pub, not returning... They had been cutting paving slabs and the carborundum spray was on the kerb and I slipped, crashing onto terra firma. Exit one pair of trousers, enter one bruised knee and a bruised thumb base! . I had to laugh, though, as it must have been a real sight seeing me trying to stand up. I must have looked like a turtle on his back! I certainly needed a after that!!! Unfortunately if I fall over now, without a physical means of support, I cannot get back on my feet, but more on that later...
I’m pleased to say the repercussions were more bruising and embarrassment more than anything else.
Come the week beginning 1st November, I had another week’s holiday. This was spent largely cleaning my flat, ready for my Cousin and her new partner to stay for my birthday bash. They had come down for a day, earlier in the month, so I could meet him, and also tell her what my impressions of him where, as she knew I’d be honest. Luckily we got on very well, and spent a lengthy day walking Kew Gardens before a well-earned and a bite. Anyway, the flat got a good Autumn, although , clean. this incapacity. Everything takes so long, with some things being almost impossible. Enough, it was done to a reasonable standard. My old bike, that I’d always intended doing up, went to the Eco-Scroungers who have set up a squat (they call it an ‘Eco-Village) on the waste ground opposite. At least they use it. I also put up a spare bookcase, so my excess no longer litter the floor! and I get my dining table back!
I also had to visit another at the . no invasive tests, just a general study and overview.

And the verdict? I have lower body muscle wastage, incorporating ‘Core Muscle Myopathy’ with, possibly, genetic Muscular Dystrophy, type unknown. It is getting gradually worse, but slowly. I said I would say what it was when I knew, but that is all I know... Future effects and outcome is unknown, as is the name of it, but I am now registered disabled!!! Not that I’ll admit it!!!

So there it is!

The next chapter regarding the Birthday Bash is to follow, as my arm is aching now, but I hope to get back to entry writing again, now both wings are flapping!!!



MMF

Very dear MMF. big


Oh I am soooo sorry. And you are so young. But of course, if you can bear it, there is always the recourse to a wheelchair. I do know that mine has given me such extra freedom, but of course it depends where you live. In the previous town where I lived people never used to talk to me in a wheelchair - only to the person pushing it. I used to swan off in a fury, But probably if you cope with ab electric one you would be alright.

Gosh you are wonderful to have coped with that muscular dystrophy for so long. I hope your dad is more sympathetic.

Anyway my thoughts are with you and I wish you well.

Take care of your self.

Christiane
Also ran80

Sunday 13/XII/09 6.41 GMT

If I remember correctly, that's what they thought you had when you first went to the hospital - how many, two? three? - years ago.
I've looked it up, and they don't seem to know how to treat it.

Did the doctors give you any advice?

Very sorry to hear you injured yourself so badly.

I hope you're as fine as can be now.

MMF thanks for the update

Being "registered" is good make sure you claim all the benefits you are entitled to, including carer's allowance (even though you live alone, my mother claims this for herself and pays people to do stuff for her with it)

with the bureaucracy

* leaves an ice hockey goal keeper suit on the floor*

Don't stumble upon it, wear it! I think you've had your share of bruises, scrapings and such for a while now.

Take care, mate.

So sorry to hear about the diagnosis, but at least now you know, and others too, which should make life a bit easier. I agree with GB, go for everything you can, you have earned it.

All you can do is take one day at a time and not give in, which is unlikely

with it all,

Websailor

My sons, all being boys, were tested for muscular dystrophy at birth. I don't think that they had a cure for it then, so I'm not sure what point there was in doing the test.

You'd think they would have got a bit further with the research by now.

And All the best to you, MMF - really glad to see you back.

Thanks Folks, for your suppprt and kind wishes.

The MD tests were to find out why I was gradually getting less and less mobile.

15 years ago I was told it was because I was and lazy... this despite 25 years of cycling everywhere, including 7 years covering twenty miles a day! The other possible suspicion was alcohol damage which can also cause muscle wastage, as can be seen with some chronic alcoholics.
both of these have been removed from the equation.

The actual cause, and name of the problem, is still unknown and, without further tests, will remain so. However those tests are expensive, so I am unsure whether they will get performed.

All I do know, for certain, is it will not disappear, and it will get worse. it is progressing slowly, and only appears to be affecting the lower part of my body so far.

I am not in denial as to what is happening, and accept it, but at the same time I don't dwell on it and shall only refer to it when adverse things happen... such as headbutting door handles!

I should really get back to entry writing, which is my aim after the new year. Need something to do with redundancy looming! But that's another volume awaiting writing!



A MMF

>>However those tests are expensive, so I am unsure whether they will get performed<<

Expense be hanged - ensure they're done mate. This your your health and well being we're talking about,and you've more than paid your share of National Insurance contributions

so don't take no for an answer, ok?


(And don't accept "well, maybe, either)



btw... welcome to the elite club of registered disabled. If you can survive all that rigmarole and not sink you're officially indestructable.

Oo we're an 'elete club' now?
I can't quite remember, but think there wasn't a 'treatment' as such for MD last time I was looking at such things : however, its like many such conditions/diseases; yes, its progresssive, and yes it'll eventually get worse, but the rate of progression can vary wildly from month to month, letalone year to year... so whilst it might suddenly take a dive and get a whole bunch worse (which it soudns likefor you it has over recent months/years, it can then sometimes go into effecitvely remission for a simualr or longer period of time )
I remember oo must have veen two decades ago now when my uncle who'd had MS for like forever, suddenly went downhill a big long way... but actually hasn't got that* much more worse in the following twenty years... Not much consulation for a guy who used to be pretty damn active, but at least it has settled down for a bit long may it conintue to do so
And can't remember If I ever got round to E-mailing you to say 'sorry' for myself and Roymondo being so crap in getting too pissed to make it to your birthday That was really very poor form by both myself and roymondo... even from our useually low starting poitn we managed to do even worse than useual

Hi MMF.

I was looking at my Friends List and came across your very special name. I hope that you are feeling a bit better and happier. You have so much to offer and I really think that you should start writing again. I am going to send you an email so that in the New Year you may perhaps feel well enough to come down and visit mel K. is coming back for Christmas.

With much affection and keep up with your courageous approach to life and its vicissitudes. You are a very special person.

Christiane
AR80

Thursday 17th December 2009 8.50 GMT

Sometimes it feels better to be able to put a name to something - even if the diagnosis wasn't one you wanted to hear.
I hope the progress is ve-r-r-y, v-e-r-r-y s-l-o-w

Must get that walk round Kew done when the weather improves!

Folks, thanks.

One thing 'it' doesn't do is get me down... it is a challenge, not a problem.

I can still get around quite reasonably, on the flat, although gradients can be trying at times, and steps with no handrail are a real frustration!

I had to . A couple of weeks ago I came back from a gig, and was heading towards the Underground at Victoria Station, London.
For some reason I didn't go through the main gate but went through the side gate instead. No real problem there, except there were two steps up to the walkway that crosses the tracks. No handrail and tiled walls! Stuck. I had to drop my bag and fiddle to the floor, ease my arm around the corner to get hold of that handrail and pull myself around, all this while others were dashing for the last train. Frustrating but funny. Thankfully I caught it. It certainly won't defeat me.

And, Teuchter, Kew is always on the cards, and Wilma would like to come as well, if it can be sorted... I'll see what specials are organised for the coming year.

Thanks again, everyone, for your support.

In the words of the song: 'Things can only get better'.
http://www.youtube.com/watch?v=ewktFIb4V-Y

MMF

Take care of yourself, Mazin, and don't overdo it! You're always so busy

A walk in Kew with three lovely people - Teuchter, Wilma and Mazin. Do I smell Spring in the air? Spring meet?

Dear MMF,

Ever such a happy and blessed Christmas to you. And everything of the best for the New Year, and your health. Keep your wonderful spirit.

With affection

Christiane and keith.
22/XII/09 13.15 GNT

Hope you're coping with all this white stuff on the pavements, MMF