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Sunday, 12 August 2018

RP DIARY AND THOUGHTS BY FIONA CUMMINGS


Good morning Bloggets.

 

The charity RP fighting blindness has received 14 million British pounds since 1976 to spend on research into finding a treatment for the eye disease.

An yet still on their website, I read. “There is currently no cure for Retinitis Pigmentosa and apart from one or two very rare forms of Refsum Syndrome and Bassin Kornweig syndrome, there are no proven treatments that slow or stop the condition worsening over time.) This isn’t good news. But there is real optimism and ongoing clinical trials indicate that treatments may, be come available over the next ten years. Gene Therapy, stem cell therapy, transplantation and artificial vision. There is also talk of implanting brand-new rods and cones rather than try to bring back to life old. I do wonder if we are barking up the wrong tree. There are too many minuscule attachments from our eyes to the brain. And they are tangled it’s too difficult to define good and bad, so, why can’t we just cut all those ties for example and totally introduce something like a battery that does all the work of everything behind the eye and give us the same vision as we would have if we had normal eyesight? Bypass everything and just invent the one tiny charge that will make everything work. We can be in America and through our eyephone or even a watch on our wrist, we can turn on our heating at home or turn on lights. Some cars we can work from our iPhones. We can stand in our kitchen or in a shop and make our horn on our car beep, turn on the car lights or check if our car doors are locked. All through an App. I do wonder if the technology is there just there hasn’t been anyone who is passionate yet to do research into such tech.

 

I know the body has to except whatever we are putting into ourselves, and you old readers will know my opinion on that subject. For all the prisoners who are in for life or having to face the death sentence, then practice on them rather than animals who have done no crime then we will get to treatments so much quicker.

 

The first human trials commenced in the UK in 2007 LCAGene Therapy trial.

11 years ago.   

 

I was talking yesterday to a friend about how much we hate the words visually impaired. If we tell someone that, what does that mean to them? Are we partially sighted? Or, totally blind, or almost blind as in we can’t see enough to see features read or walk without the use of a white cane or guide dog. Bring back the days when we were blind or partially sighted. Then we won’t get stupid comments from people who just don’t understand what we mean. I mean, who could be offended by saying we are blind? Or partially sighted? What is there to be offended by? As for my Husband, he has never had vision, so there is nothing to impair. Nothing has diminished. Nothing has gone. He’s never had anything! So, he is blind. End of. But that is an offensive term, an yet I’m yet to meet with anyone who feels uncomfortable about telling people who need to know, that we are blind or partially sighted. Just odd. I still tell people I’m blind. My friend the other day was saying she hates it when people say they are blind an yet they take photographs and enjoy what picture they have taken. Also, they say they are blind an yet they can see things like bus numbers. Or their face in the mirror. No, that’s not blind that is partially sighted. And whoever made that stupid rule up about not being allowed to say if we are partially sighted or blind, should have thought about how we feel when someone uses the terminology (Are you blind or something?) in other words, are you stupid? So that is OK to say that? No, it’s not so when the politically correct police are out there, I hope they read this blog and think for a minute rather than having never talked with us ticking boxes and sending those emails out. Walk in our shoes before fastening the laces.

 

    Yesterday we spent the day with a lovely dear friend. The kind of friend we feel so sad when we say goodbye. I wish we had more time together.

 

I have a busy day tomorrow. Yoga in the morning. Walking in the afternoon with Waggatail. And to the cinema in the evening with the girls. I think there are 12 of us going. Hub wants me to get the audio earphones but I’m not. Why? As it would make the experience much better for me. Because I just want to blend in from the outside. Obviously inside I won’t know everything that is happening on screen, but so be it. To get the earphones it’s such a fuss. Though they are amazing, I would have to ask for them, then go to another place in the cinema to collect them. Wait for minutes until they get them started for me by this point all the ladies will be sitting in their seats. So, I shall laugh at the appropriate places and put a sad face on when I feel its time. Smile….

 

My Hub still not well. He has promised if he is still not right by the end of the week, he will see a Doctor.

A few more things to think about before I go. Would you rather be alone for the rest of your life, or always be surrounded by annoying people?

Would you rather die in twenty years with no regrets or fifty years with many regrets?

Would you rather be transported five hundred years into the future or five hundred into the past?

My first answer. Alone. Second answer, fifty years. Third, past. Now, how about you?

  

 

 

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