The daily dribble

[mik]

hi trevor,
hope all goes well, or as well as it can. thanks for being a guinea pig, hope you get the benefit.
mik

[Trevorhb]

Thanks Mik, I am up and about waiting for the results from last night. Hope to be discharged by midday.

[joed]

Morning Trevor

hope all went well and you got a half decent nights sleep funnily enough I have just been looking on the research pages on here and wondering about whether to volunteer for trials or not , I expect its a lot more involved than I imagine , hope your results help you take care.

jo xxx

[ccinjersey]

Good Morning Joed, All

I just want to say something about giving a drug trial a go. A while back John PM about the drug GM6 drug stating it was here starting clinical studies and maybe something for my dear friend to look into. I did the research and it turned out her neurologist in NYC was heading up a study for it.

I contacted the doctor’s nurse regarding the study. She pulled my friend's chart, and told me it looked like she would be a good candidate for the study, but she needed to be seen by doctor again to be reevaluated. When I told my friend all about it she wanted no part of it.

A drug that there is now the petition to try and fast forward it to make it within reach for all, was right in her hand. Who knows how much she could have benefited from it today! In my opinion if you have the opportunity to try something you think might benefit you, give it a go!! Nothing to lose. What’s experimental today becomes routine tomorrow.

Lets hope GM6 proves to be something that really works for all

[Trevorhb]

We thought we would be coming home today, but no. The consultant wants me to stay at least one more night so they can get the dose right with the drug which hopefully will finally control my drooling. The sleep study found my CO2 level at night is quite good, so no pressure to use the Nippy for long periods. They are certainly going all out to help me at Papworth, they do seem to have an understanding of M N D.

[willsandco]

To know that they do have an understanding of MND is in itself so comforting. isn't it? - and I am pleased about your CO2 levels too. Professor Shaw asked me to stay for another night and that was fine because I was so relaxed, no pressure and you have Nettie with you as well. You will be right! x

Love

Joycie x

[joed]

That's good about your co2 levels trevor and that they are trying to get it exactly right and not just rushing you in and out , everytime I see my neurologist the main thing he always says to me is that he doesn't want me stressing ( easier said than done ) and to let others sort everything ( again easier said than done ) but I am trying , thankyou cc I will definitely take what you said into consideration , we're off on holiday friday so will think about it while we're away and talk with my doctor when we get back .

jo xxx

[Lycanthrope]

Just wanted to keep the daily dribble going Becky x

[ccinjersey]

LOL it is a great thread Becky, maybe Mik can pick another topic to dicuss to keep it going....

xox

[Lycanthrope]

Lol CC yes it's my favourite thread title. Too good to lose xxx

[Trevorhb]

Had another fall last night. Bent over to pick up a cat's toy,overbalanced and fell back stricking my head on a glass panel door. Luckily it was slightly open and swung back with the force. A bit shook up for a minute or two, then okay, no harm done. Annette did have a problem getting me up though and I am hardly heavy.

[willsandco]

You should take more water with it , Trevor! Ha! Ha! x

[willsandco]

Seriously though, balance is a major issue with me. It is so frustrating because all the everyday things you do without thinking are obstacles now! I know I have to really concentrate with most things now and I don't like that one bit! But I have the lovely Peter behind me watching everything I do - which is lovely but I wish things were back to the way they were before. The only place I am safe is in the car driving and he will let me do that - except he worries all the time in case I break down and have an accident and cant speak and explain to anyone what I want. But, in the Kia Picanto, I have enormous laminates with emergency phone numbers on, and an IPAD with Predictable by Therapy and copious pads and pens. Adapt and evolve, they say! But seriously, Trevor, take special care - the last thing you want is a fracture! Love Joycie xx

[Trevorhb]

Annette has gone shopping and I have my orders not to move, so i am in my recliner watching the tennis. Great match.

[Terry]

Likewise Trevor;

Hope the doors OK. Decided against going to the meeting today as it's snowing so much.

Warm, in armchair, feet up, love Terry