Update on prospect study

[Mamapiggle]

I went to the LGI last Tuesday and was seen by a neurologist. Who asked me lots of questions about the history of my condition. she gave me a full examination, she told me that that everything would go back to the hospitals in London for the study . Unfortunately it will be a few years down the line before anything will ever come of it , which was what I was expecting anyway. Then she handed me over to the nurse who said she was going to test my cognitive skills. The first test was easy as I had to name animals that she showed me pictures of. The second one was more difficult she asked me to draw up a clock face with all the numbers and set time to 10 o clock. I looked at her and said are you having a laugh? 🙄🤔

The next thing she asked me to do was drawer and copy shapes which I struggled with as I cannot write well. After all on the tests they took some blood so they could test it. I have bruises 😣 on another subject I've been trying to do the voice banking , which isnt as easy as it sounds. I haven't got past the first hurdle yet . Your voice has to be a certain level. I struggled to do it last week so the nurse is coming back tmorrow so i can have another go. I have been practicing so hopefully the recorder will pick my voice up tomorrow. On a lighter note my youngest daughter is back from her travels from Australia now and instead of typing those we decided to speak to my tablet so it can write what I am saying. Sometimes it hasn't always picked up what I was saying and changed it so we have had a good giggle at the words it has typed. thinking of everyone, especially those who lost loved ones recently. Jeanette xx

[raincitygirl]

Dear Jeanette - I just love the sense of humour underlying your post

..and I really admire your perseverance in the face of this disease! G, my hubby, is trying to use speech technology (though not voice banking - his voice is too far gone) and at first we thought "its the answer!" ..but of course it only supplies some of the need and you do have to keep at it to make it useful for you.

Have fun with your daughter, and keep us posted!

Anne G.

[Mamapiggle in reply to raincitygirl]

Thank you Anne I wil xx

[Yvonneandgeorge in reply to Mamapiggle]

I also love your sense of humour, I bet you are happy to have your daughter safely home. Yvonne xxxxx

[Mamapiggle in reply to Yvonneandgeorge]

Hi Yvonne thank you. My daughter has moved back home after living away for over 2 years it's lovely to have her back but I forgotten how untidy she was saying that she did bring me a cup of tea in bed! I'm bit worried she fully understand what happening or she chosen to ingore it I don't really know the answer only time will tell. Jeanette xx

[Mamapiggle in reply to Mamapiggle]

Hi Anne, I managed to get past the first hurdle which meant I could do move on to do some recording I had to do ten sentences which I managed to do quite easily. I'm just waiting for a an email from the company who are American see they can understand my Yorkshire accent if they can it should be all all systems go! Jeanette xx

[Katiebow]

Dear Jeanette, Ben was also part of this study but only managed to attend twice, we were waiting for the next call up but he would have been to ill to attend. At least they got umpteen blood samples and a measure of cognition from him. He declined the lumber puncture in the end just a step to far for him.

Well done for taking part.

Love kate xxx

[Mamapiggle in reply to Katiebow]

Hi Kate thank you for getting in touch. I am so sorry that Ben has lost his battle with cruel disease. It's heartbreaking and scary to read every day the struggle that people are going through. I just hope that my family are strong enough to through this. I don't think I will be called back for the study I was told that one off visit so I don't know about lumber puncture! Thinking of you and family. Take care. Love Jeanette xx