It’s almost one in the morning. I have been to bed, even fell asleep. Gosh shock horror as I never sleep before at least two. Have I had my hour’s sleep? I feel so fresh. Haha. I’m not normal. I have come downstairs because I had to check the front door. Boy wonder has just took Shamrock home and I do get concerned that he has not locked it as Sham lives around the corner, so he may think what is the point? Well, he had locked it, well done but hadn’t closed the lounge door, or had he? Well I say that because our new doors were put on before Christmas, lovely, perfect, but then our painter came to stain them took the handles off and they have not closed properly since. So, one little Wagga nudge and they open. A smile on her face and she is happy on the sofa. So here I am, with a very warm cushion behind my back!
BW just come in and I asked him where on earth had he been? He has been away over half an hour. He said talking with Shamrock. Well what funny kids they are? They fall asleep by nine in the evening and on the way home after the pumpkin hour, they talk? We really do live in an upside down world.
Hub has some days to take off work before the end of this month so tomorrow is one of those. We don’t have any plans so far. We may go for a walk in the morning before the rain comes to visit. It won’t be anything exciting, just our normal walk to the shops and around past the monkeys in the playground and back home the long way.
Oh, I was cross when our online shopping came yesterday. Apparently, there was one item missing, so an item they couldn’t replace with anything, so something really unique, right? A one off? No other make like it? So, what was it? Blooming dish washer tablets. So only one make and one pack in the full supermarket? I couldn’t believe it.
I haven’t got any of my admin jobs done this week. I have so many to do as well. I don’t understand it, I used to be so organised like this. I think it’s because I simply can’t be bothered with people now companies are so unprofessional and it takes so long to get through to who you need to speak with. Also, my filing isn’t half as good as it used to be. Why? Not sure. I used to be very anal about filing. So, to look up what numbers I need then addresses?
I received my PIP forms yesterday so that is on my mind. Hubs just got sorted with his tax and now my PIP form. This should be fun?
Looking up trials for treatments for RP, here is what I found, if you live in Spain, A clinical research study of Intravitreal injection of Autologous bone marrow Stem Cell and Subconjunctival injection of saline for the treatment of Retinitis Pigmentosa
In El Palmer, I hope I have that spelling correct?
Italy, A clinical trial seeking patients for a research study for the treatment of Outer Retinal Degeneration or Retinitis Pigmentosa
Camposampiero
United Arab Emirates Stem Cell Ophthalmology Treatment Study
In Dubai
There are loads of places in the US and in the UK Moorfields hospital in London too. At least there is news that we have moved on from mice, though sadly we still study them. But there is a lot of trials going on and even starting phase II.
I believe Japan is the country to look out for. They are doing trials with three hundred people and are even up to phase 3. Gene therapy is so exciting. Personally, I can’t get so excited about artificial vision like microchips but something to restore sight as a fully sighted person would see gives me hope. One day I hope I’m writing not about hope for the future but how hope changed our lives!
Phase I is done with just a few people, phase II more and phase 3 hundreds of people. Then there is phase 4 and I believe that is the last phase before we have lift off. Most trials are phase I some two and as I said, Japan has phase 3. Each phase takes a few years and these trials are years after the animals. All it takes is to work with the animals, then if phase I goes wrong, back to the drawing board starting all over again. It’s not only frustrating reading about the trials, but it’s very confusing and sometimes I think one needs a degree in medicine to even comprehend the wordy documents.
Each morning I reluctantly open my eyes to receive a slap in the face as my dark day begins. At nights, I look like a fool, in the bathroom mirror to try to see my face. I mean, why would I suddenly see? I guess it’s because I believe in miracles. I believe in some kind of higher being and I have hope that one day my life will be part of the sighted world. In the meanwhile, I shall continue laughing crying feeling excited and devastated as well as love and be loved!
To close this blog for now, some quotes.
When there seems to be no hope, dare to find some?
Life isn’t about waiting for the storm to pass
It’s about learning to dance in the rain.
And last but not least
“Never give up on something you can’t go one day without thinking about.” (Winston Churchill)
Nighty nighty Bloggets. X
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