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Tuesday, 2 January 2018

RP FILES BY FIONA CUMMINGS


 Good day Bloggets. Gosh parts of the US are having really cold weather I think I read it’s the coldest in a hundred years. Here, it’s just raining hard.

 

I always wait for the Spring at this time of year. I love winter and can’t imagine living in a hot country over Christmas, but as soon as December is over, I look for better weather but unfortunately in England now, we have to wait a lot longer than weeks to see better weather, possibly four or five more months.

 

In our house it feels bear though in reality, it’s far from that, but without our decorations, it feels empty. My neighbour Di said our house looks naked now from the outside as all the colourful lights and statues are away. Of course, we left two decorations out, in our hall. We always leave at least one decoration out. It’s most annoying. But I think for two people who are blind we do good. Our best anyway. Two straw bird houses were left out this year. Hub spent most of the day putting the boxes full from decorations and trees in the loft. We took everything down yesterday the outside things went in the garage and the inside in the loft, I am sure never to be seen again. But Hub says he knows where everything is for next year, that’s fine, but by the time next year comes, will he remember?

 

As for my straw bird houses? Hmm.  

I must admit yesterday when I was putting the decorations, beads, tinsel, lights and many standing decorations away, I did ponder on the idea next year to just not bother. In fact, there was a part of me that thought, let’s go away next year. To the depths of wherever and beyond! For the first time in my life I understand why people do go away at Christmas now. something I just couldn’t comprehend before. I have been extremely disillusioned by people this past few weeks. And I think this year will see a new me. Watch out…. Haha. Possibly some home truths in my blogs coming at ya. I have been restricted for a while I feel. Time to let it all out again.

 

And, I have just heard some really shocking news. The Nepal tourist board have decided that blind people, cannot climb Everest

Oh, I’m furious. Firstly, they wouldn’t clime it without sighted assistance If I’m wrong then no one who has a disability can clime right? Or, is it just people who are blind? If so, what a disgrace and I hope organisations like the RNIB will sort this out. We can’t see, we can walk and there are fitter blind people out there than some sighted people… Don’t count me in on that though. I’m happy to read about people achieving such an experience but really angry to think it’s something else that we are prevented from doing.

 

ErikWeihenmayer from I believe America, is the only blind person I have heard of to reach the summit of Everest which he did in 2001.

ArunimaSinha from India was thrown off a moving train in 2011 by muggers who wanted her gold and she ended up having to have both of her legs removed. Two years later, she climbed Mount Everest.

 

Sad news today a Safari park in England has had a fire and 13 Monkeys have died. So awful.

 

There is some good news for stem cell research for Retinitis pigmentosa every month now there seems to be something new, we now just need to push it further and get to the people faster with bigger results. Mice need to be in the past now. a horrid memory that we once used mice for research. No more need for animals because we have got to the people already. I must say, I feel last year was the biggest so far for the vast amount of new news about RP. So, let this year be the biggest year ever so far for discovery and end answers.

 

, clinical trials in the UK, US and France.  Of gene therapy for the early onset RP meaning childhood retinal disease, Leber congenital amaurosis, Usher Syndrome and Stargardt disease

 

Gene therapy is really important too. The first gene therapy trials were started in 2007 in England and now in the USA and Europe there are more trials a harmless virus will be injected into the retina and replace our faulty genes.   

 

   Two gene therapy trials are ongoing in the UK now and a third trial will hopefully commence in the USA this year.

 

Hang in there let’s see what this year brings us. I don’t want anyone to go through what I went through when I woke up blind. At least by reading my blogs, you will learn what not to do and what to try to do to make your path easier.

Remember if you have any questions about RP or any subjects in my blog, just email me at


 

Hub has started his fitness again by entering the big bad gym… OK, garage. And, getting on the treadmill.

I need to start tomorrow. He loves his new Apple watch as it tells him how far he has walked and how many calories. But when he told me today he lost or burned 242, I thought, that will be the nuts from the top of that huge chocolate gateaux love…

 But it’s more than what I, have done.

 

 

On that note, time for me to cook my Sons dinner. It’s after eight in the evening. Just pasta tonight with peppers and mushrooms and other things I may find in my fridge…  that will mean I can have some left over for his lunch at work tomorrow. So, I won’t need to think about cooking that later on.

 

Since Hubs been off work on holiday, I must say I have been eating less food. Normally I would have my dreaded four slices of toast but for two weeks now, I have been skipping breakfast.

 

I guess that will go towards making room for the chocolate I am having, to eat… Well I’m saving others from it. If it was laying about there, my boys would eat it…

 

Let’s see what tomorrow brings. I have a blog to write for one of you, as in one of my Bloggets has asked me to write about something. Something that is rather interesting.

 

So, for now I shall leave you and love you. X

 

  

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