Search:

Hi

Thank you all for your comments. We are not with Sheffield anymore and haven't been for about 3 years. The journey was too much for Adie and there was nothing new to be told apart form he was...

Hi All

G60dubber - Adie is beginning to have problems with swallow. We need to look at having a PEG, however his FVC is prob down to about 25% now. We are very nervous obviously as Maria had it...

Hi Springtime

Please have a look at postural drainage post I wrote on Living with MND. Hope this helps.

Thanks

Kiran
xx

Hi Terry

Yes Adie been on a Nippy machine for the last 2.5 years

Kiran
xx

Hi all

Just had to share this...

Adie had a mucus plug which was too big for him to cough up.. after 4 ambulance call outs and 2 stays in hospital we discovered postural drainage... its...

Thanks all. Hope you manage to get somewhere lovely Gerald :-)

Would have loved to have you as a noisy neighbour Terry!! Adie loves his music :-)

Was great to me you too Joycie. We broke even...

Hi all

For those of you missing G60dubber on the forum.. he is keeping well, considering the ups and downs!

I just wanted to share that we booked a holiday through the disabledholidays.com...

Hi

Adie has Mucodyne Carbosisteine tablets in the morning and the liquid before bed at night, together with a humidifier and that works well. He was also prescribed the Scopoderm TTS...

Hi Sarah

My lovely husband Adie was diagnosed at 38. He will have been living with MND 4 years this year. It was a complete shock as he was very fit and healthy. Wishing you well.

Kiran

xx

Hi

We are using Primapore padding which we get from the district nurse, or you can buy from chemist. I usually cut it into strips and cut the corners off so it does not poke into eyes when it is...

Hi all

Adie, me and our daughter who is nearly 6 need a family break away. If we go we need the bipap machine, shower chair, profile bed, hoist, wheelchair accessible and wet room..... so it is...

Hi Sarah

Thanks for that. Will let you know :-) we need an Interim solution...

Hope you are keeping well.... still loving my picture you did :D

Xx

Perfect....come on fellas...you can design something... there is definitely a gap in market!!! I never realised I would be sooooo intimate with adies ' itchy and scratchy' in my life! Lol...
...

Hi Roy

Lol... adie uses kindle for reading and I hang it on hoist, turn the reading out function on as it turns pages over automatically, then the monotone woman reads book out with no...

Ahhh there goes my husband proving the floppy hand comment!!!! Very funny :rolleyes: xx

Thanks Arthur for your reply.

Adies weakness in fingers means he cannot generate enough pressure to press the mouse button to click it. As in prev post he cannot lift hand to use keyboard keys...

It is so difficult...once adies hand is on table it stays there so he can't move it left or right. We have a samsung galaxy tablet and he can't use it and the pressure pad on laptop is hard to use...

Hi all

Thanks for all your replies.

Sorry I wasn't very clear... adie cannot lift arms so can't use touch pad or tablet... weakness is stopping finger from clicking the button. Got the head...

Adie is losing mobility in fingers and is struggling to click the mouse buttons when using computer. Can anyone suggest any different type of softtouch or sensitive mouse we can use? He controls...

We were so worried about them both and obviously they were dreading results, esp knowing Adie and what we are all going thru... so it was a happy day when they told us. :-)

X

Hi laura

A bit of reassurance if it nakes uou feel a bit better.....a couple of my friends - one is 33 and one in her 50s and lost her husband to MND - had twitching and some jerking. Both of them...

Hi Lou.

Welcome to the forum. You will be so glad you did join as there is so much valuable, realistic information from both sufferers and carers. My husband was diagnosed 2 years ago when he...

Go, Go... Go... we went and have met some great people and gone to some good events that are organised. It gives carers a chance to talk to other cares about things that make life easier.. we learnt...

Hi Magic

I changed my hours to 16 a week and have been working 4 days a week for the last year and a half. Have got to the stage where it is too much stress to try and get into work and when I am...

Hi All

I know what you mean Louise, Petal, Magic.

Adie was diagnosed Sept 2010 and I was OK but recently am feeling really down with everything. The deterioration does not seem to have slowed...