Ataxia is such a lonely disease

I've had this disease for six years now, at the very start I could still walk unaided albeit a little shakey but I could still walk. People are always telling me to stay positive and how there are people out there who have it a lot worse. I am always thinking about that yet it doesn't mean that I can't be a little sad about my situation. When people say that to me what I hear is that I have no right to be sad and I should just stop whinging. These people have no idea how it feel to gradually lose control of your body and know that things will never get better. Just remembering that I could just go for a walk whenever I felt like it is the real punch in the gut, now if I want to go somewhere I have to make sure someone's free to take me, I can't go out for long because I'll get tired and i have to make sure someone is available to pick me up, so basically I have to plan any social outing around someone else's timetable. And that is why I hardly go out, that and... what can I really do??

Sometimes I even struggle to wake up in the mornings because in my dreams I can walk even run! And then I fall getting out of bed. Sometimes I really struggle, to stay motivated is a daily struggle that no one really knows.

There may be no cure for this but you can slow it down, staying active is one way and the way I do that is by exercising like mad. Mind you, you still fall and stumble even if you do exercise and it all seems rather pointless and at times I have almost given up, but then after I have a good cry I get up because when it does get worse I have no one who can really help me. No one in my house really understands what I'm going though and this is not a very sensitive household!

I don't have much to look forward to, my sister has been dangling the prospect of a holiday but she wont settle on when and she could just change her mind whenever, plus we don't really talk or have anything in common. I remember last time we went away and we barely said 10 words and most of it was about the weather! I am just so scared of what the future may hold for me. I feel my life just slipping me by, at 35 is it already over?

Transfer heartbreak

This is the time I like to call " the silly season", players come and go it's just part pf the game and we have to accept it or so you are led to believe. Paulo Dybala has previously been labelled as " the next Del Peiro" yet it seems Juventus are done with him. Dybala joined Juve in 2015 and at just 25 one would believe they would let him prove himself, but not in the world of football, if you have a bad-ish season your neck is on the chopping board.

After bringing in Ronaldo last season who is 34 by the way, La Joya was going to struggle a bit.... but that doesn't mean he's a bad player and we should get rid of him. Juve have also gotten rid of Kean who at 19 was the future, it does make you question the thinking behind this all... getting rid of youth and potential??

This transfer policy reminds me of AC Milan a few years ago when they were selling of there youth for "has beens" and just look at what has become of a once great club, I'm not saying that the current management have lost it but it does make you question things.

All being said they have done some good things like bring in Ajax sensation Matthijs De  Ligt at 19.the centre-back is a wise addition to a steller defence and should learn a lot from Chiellini, Bonnuci and Buffon, the later has returned after a year in Paris. I like most fans am overjoyed yet I do feel for Perin who has been sent away. Anyway if De Ligt is given the time he should be a great addition.

With a new manager in Mauricio Sarri everything looks like it migt change and change can be a good thing... sometimes!
#HANDSOFFLAJOYA #

Greetings!!

I know I haven't written for a while, ever since I was diagnosed with Ataxia I have just been spiralling into depression... not that anyone would know!  Not a lot is known about the disease and there in lies part of the problem. Not knowing a lot means uncertainty and that in turns creates a fear of what may happen. All that I know with certainty is that the worse is to come and that there is no getting better. Not only that but it is not that well known

, some GPs don't even know about it so there is little support out there

Ataxia can best be described as a mixture of MS and Parkinsons, it is a horrible progressive disease that robs you of your independence, every second of the day is a struggle not to fall flat on your face and it gets worse everyday. A few years ago I could walk with my cane but with no extra help, now I cant even walk down the street on my own, my confidence is down the toilet!!

What really scares me is not being able to do or see things I could before, for example I want to see The Basilica Di Superga in Turin Italy but it's not as if I can go myself while I still have my legs and can walk a little, I have to wait around for other people to be free... and I fear that by the time they decide they can go, my legs will decide they cant and I'll be stuck here in my room forever just waiting for things to get worse.

I guess what I'm trying to say is... I fear lost opportunities. 

The Cave-man rears its ugly head.

Society has begun to eat itself. The things that make us human are being driven out, things like compassion and empathy have all but left us and have been replaced b celebrity gossip  and narcissism and looking out for number one. It starts with the top, politicians are more heartless, I mean the PM wants to get rid of free school lunches! The Government is also prone to knee jerk reactions and scape- goating without any real facts. It also doesn't help when the UK's media is extremely right-wing. This has meant that rather being a check on power, the media has become somewhat of an " echo- chamber" just repeating and agreeing with the "powers that be".

This has led to a huge swathe of people who are ill informed, and when you get leaders that like to fan the flame of hate, suspicion and mistrust you will often get violence and even fatalities. How did it get this way?? Well Fascism doesn't just occur overnight, it happens in stages... and we are all guilty of ignoring it.  The following are the early warning signs which are taken from the Holocaust museum:
1. Powerful and continuing nationalism

2. Disdain for Human Rights

3. Identifiction of enemies as a unifying cause

4. Supremacy of the military

5, Rampant sexism

6. Obsession with national security

7. Religion and Government intertwined

8. Corporate power protected

9. Labour power surpressed

10. Disdain for intellectuals and the arts

11. Obsession with crime and punisment

12. Controlled mass media

13, Rampant cronyism and corruption

14. Fraudulent elections

Now one simply has to have there eyes open to realize that nearly all the boxes are ticked. Mrs May has already shown her hatred of Human Right as she's planning to criminalize protesting and as soon as we leave the EU she plan to remove us from EU human Rights. The Tory party may not call themselves Fascists but if you just pay attention to what they do and say.... it's pretty damm close they do value profits over the people.Also the treatment of workers now is as close to slavery without calling it slavery. The worker is exploited to breaking point and has very little to show for it. Nurses have to work long hours while using food banks to survive and apparently this is acceptable by the PM!!

 Like I said before the media in this country is glaringly right- wing and so agrees with the Government  but if a news organisation dares to think about things another way they get bad mouthed and then shut down. This has already happened to the Iranian Press TV and know they are attempting to do the same with Russian Today, One of the steps of  a closing society is to make dissenting voices feel like criminal, which they have begun to do especially after the referendum to leave the EU by calling the opposition " remoaners" and how they should stop complaining and accept it.

If I were to list how this country is corrupt, I would never finish but let me just remind you that the PM's husband hasn't paid any corporation tax for the last eight years and Osborne and Cameron are to make a huge windfall when we leave the EU!

This country should rename itself as Mediocre Britain because a great country doesn't treat its citizenry like this.... But I forget, we aren't citizens we are mere subjects!

With countries like the US Italy being seduced by the rhetoric of blame everything on the other and Italy for Italians, it does make me fearful of the future but also curious at how future historian will judge us all for letting it happen again.

It's here....