First day back at work for Hub. Our Son started working at
seven this morning. Crazy, but he is packing in as much overtime as he can. I really
don’t want to see this as I want him to have a life other than working. No one
could ever say he is lazy that is for sure. I’m constantly worrying about him. It’s
so not good for me. I really wish I was a hard parent who could with ease, chill
and not care so much.
Sham came around last night. She’s been away for the weekend.
Stayed at a hotel with her parents and sister. Visited family and seemed like
she had a great time.
Now cat lovers, is this fact true that I was reading today? Siamese
cats are white bodied with black ears, tails and socks. But, when they are
cold, they turn totally black? Really? Well, I guess we turn blue, haha.
And did you know, that mail seahorses, give birth? Oh, the
things we learn together… Or is it just me who didn’t know that?
Last week I called our collection people to get rid of some
internal doors from our house. We have taken two out of four so far down. The other
two are coming down tonight. I hope. All of them to be put out for the
collection tomorrow with loads of boxes. Well they take ten items. But today I called
them to ask if they will take my microwave and air fryer. They said no, because
I had to call before 12 today. Mid-day. Well I checked the time, it was five
minutes past mid-day. I asked could they not just email the collectors? No, because
it’s a list written and it has to be done by mid-day. I explained that Hub and I
are blind, we can’t take the stuff to the tip and they won’t go in our bin as
there would be no room for our rubbish. A phone call to the collectors? An email?
She said no, it had to be before 12. Well
she went away and came back reluctantly and said that they will try their best
but they can not guarantee…
Our bin people drive me mad. On top of our recycling bin for
paper, was a box a few weeks ago. The box was in the bin but sticking out. The man,
took his time to remove the box and leave it on our drive emptied the bin and
brought it back but left the box…
I can remember the days when the old bin men used to open
our gate, walk right down the side of my house lift the bin on his shoulder
empty it manually and bring it all the way back.
Now days, bins have wheels on. They have to be at the end of
the drive. If inside the drive they won’t take them. And there are so many
rules and regulations now, it’s getting so bad. Like last time I had what’s
called a bulk collection, they refused to take a full box of bathroom tiles. Brand
new by the way. They don’t take tiles… why? I thought they recycled? They won’t
take polystyrene in the recycling as I believe you can’t recycle that, fair
enough, but they even won’t take it for the bulk collection. So, how are we supposed to get rid of that? Some
boxes you get from Amazon for example, are full of the stuff. And some of it is
solid. So, it can’t easily be crushed to go in the bin.
Well grump over. Enough of that rubbish talk. And onto the
year ahead.
Firstly, news on Retinitis pigmentosa.
The gene therapy Luxterna has won European regulatory approval
for the treatment of inherited retinal dystrophy caused by mutations in the RPE65
gene. Now this is where we need to know what gene we have. I wish that was an
easy process.
Luxturna is the first and only gene therapy
available in Europe to treat inherited retinal disease. It’s already been approved
in the United States.
And before we are allowed to get this therapy if this is the
right one for our type of RP, they will Internationally have to decide on pricing.
And of course, the time line for this decision, is difficult to predict. Come on
guys, this is peoples lives you are talking about, how long can it take? A rough
idea?
We have to have hope but I admire those of you who can just
get on with life and forget that one day you may be able to see. Personally there isn’t a day goes by when I don’t
pray to see. But at least it hasn’t taken over my life for some time. Some years
in fact. I have to tell myself that no
matter how much I need to see, how much I wish life was easier, how much I need
to have vision to make life better for us all, a cure or treatment won’t come
along any faster because of my wishes. It will happen when it happens. And when,
if, it does, there will be a huge party. It would be lifechanging not only for
me but for my Husband and Son. For his future children too!
For those who can see, I think the above one-off injection,
will prevent those from losing more vision. For those of us who are blind, I think
we will get some perception back.
Scientists have placed a gene from a rabbit into a plant
called Devils Ivy, gave the plants a boost in breaking down airborne chemicals
like benzene chloroform, they want to add a protein to work against other
household pollutants too!
I don’t like this. We are modifying plants and mixing them
with animals. It’s just not natural and I do worry about the rabbit. Why not
produce more natural cleaning household items. Some plants already have a
natural way of cleaning the air without interfering in with nature.
We are to have 5G network apparently. Now we have 4G. So faster
internet…
And inventors are turning scooters into a robot by adding
sensors in them.
Nothing mind-blowing for this year, so I guess
we have to make our own excitement and news, right?
It’s been lovely to hear some of my Bloggets plans for 2019.
They are all very positive. I get the impression that a lot of you are glad to
see the end of 2018!
New Year can be all about facing new challenges with a new
perspective. So, here are some quotes to try to inspire you and if you have
anything inspirational to tell us all, then please email or message me to let
me know… email address will be at the bottom of this blog
“Experience is simply the name we give our mistakes”” Oscar
Wilde
“Let January 2019 be the first page of 12 in your book. Let
it be an interesting read.””
© Fiona Cummings
2 comments:
RPE65 is the only gene Luxterna is used for. It's an Usher's type of RP.
Very strange question you may be able to answer, if this helps people who have this kind of RP which also affects hearing, Will this also bring back hearing for those who have lost some of it.
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