Recent content by Candle2014

In the UK there's a very knowledgeable chap who has researched all sorts of medication and supplements and says he has managed to slow his progression. Mucus and how to eliminate it probably has a thread of its own. Search MND Forum and his username is Fishmate 12.

I hope you are free of this dreadful disease. Sorry about your aunt. It may not have been MND and even if it was you may still be OK. Thinking of you.

Hi Tillie. Thanks for message. I've been having a wobble (probably because it's Easter, mum's birthday later this month and on the UK forum a man I was in touch with died on Monday and a friend's husband isn't expected to last much longer - she also posts on this forum.) I don't know whether...

Hi Tillie. Thank you for your kind words which made me cry this morning and again just now - par for the course these days. It is as you say difficult to get over watching a loved one through the dreadful journey of MND although so very much worse for the PALS. I was sorry to interrupt your...

Sorry for confusion about wall and conditions of membership. I'm from the UK and mum was 74 when she died last November. Looking back she had symptoms for probably a year before diagnosis in February 2014, by which time she could not walk or talk and was starting to have swallowing...

Is a personal introduction conditional of membership? I note my post this evening is being held back, which is a shame. There's nothing sinister it's just the British way with a need for privacy, which is different to other nationalities. I won't post again.

I purchased the necksofa and as it was so comfortable another MND sufferer followed suit. It has a fairly firm inner support surrounded by memory foam and a removable, washable cover. It was expensive to ship to the UK but they do ship worldwide. Ray Slipatchuk/Florida helped me enormously...

Sorry you need to be here. My mum wasn't keen on a PEG or assistance with breathing but did have an NG tube after quite a lot of persuasion from nursing staff. I was happy to support her decision although it was difficult as no one should have to make them. I'd recommend doing as much as you...

At 16 you shouldn't be googling symptoms for diseases you think you might have. You've seen doctors who've reassured you about one disease so have moved onto one that is so very unlikely it must be near to impossible. You'd be better asking your GP to refer you to counselling to manage your...

Hi Sandra I'm so sorry for you and your mum. However you do need to sleep. As other people are there to keep an eye on her and know how to use the equipment properly then you must take the time. Whether or not you can take time away from work is tricky. Can you afford to do so? Will work...

My mum insisted on spelling and grammar with full sentences too. Even if I guessed the rest of the sentence she would still continue. I guess it was the only independence she had and I learned to stop finishing her sentences for her. I suppose I wouldn't do it to someone talking in front of...

I didn't start posting until after I lost my mum last month but I have been reading this site and one in the UK since February when MND first reared its ugly head. I have been through every emotion possible at different stages and repeated a few, which is normal I'm sure. Some like groups...

So sorry you find yourselves in this situation. You're in the right place for help and support. X

Just for clarification mum used her hand to hold the mouse throughout but as she started to lose movement in her arm she was able to still move the mouse by using her shoulder more than her arm.

My mum used an ordinary Bluetooth mouse on a tray on her lap. First she had to adapt the settings to a right click, then she progressed to using software called "dwell clicker". She was able to use this by directing the mouse from the shoulder most days, although sometimes she struggled and we...