A couple of issues

[Deb]

Madge. I'm so sorry you're having such an awful time. It's not surprising you feel so low with everything going on and having thrush is miserable.

If I get cold it takes me forever to warm-up again and my legs stiffen up totally.

Warm hugs to you xx😘🤗

[Heather R]

Madge troubles never seem to come singly do they? Thrush just is the icing on the cake when you are run down, I have had it twice, and feeling helpless is so upsetting I find. Hope you are finding solutions to make you more comfortable and supported xxx

[TinyLady]

Madge I've had a repose topper for a while. It was actually a great help at first, but now is not effective enough and I am starting to get pressure issues. Maybe the topper will work for a bit, but like others have said, this really needs sorting and I hate that you are sore, uncomfortable and feeling sad.

Interested to hear how you get on with the neater eater xx

[AngieCanuck]

Madge I’m thinking of you and hoping that you have sunshine moments today. This disease sucks, with its continual loss. Trouble is, we adjust to the loss and then things “progress” and we have to start all over again.
Do you have a nice electric blanket? I find my heating pad is a life saver when my muscles are cramping up.

[Madge]

Thank you all x I have had a good cry today x

[Johnny5]

The loss of muscle changes the circulation to extremities which is going to make one colder. Muscles play an important part in circulation so it is expected that we are going to be more sensitive to the cold. I used to live with a fan blowing on me, but now it makes me so cold. Things are changing...

[Artie]

My hands definitely get more clumsy in cold weather. I wear fingerless mitts to help with this.

[Tony]

Cold is definitely the enemy. What muscles you have perform less well. I’m already thinking about my fleece lined trousers for when I go out.

[Madge]

Thanks Ellie, funny enough I have OT and neater eater rep visiting me next week.
i have a cleaning foam and a cream for the thrush and barrier cream for my blisters.
i can only give the topper a try. Just feeling rather sorry for myself at the moment hey ho x

[Ellie]

Madge Here's a short video of the Neater Eater - if it's something which is of interest to you, ask your OT.

[Ellie]

Madge You poor lady, sorry you're having such a rough time.

Did the nurse give you any ointment or ask your GP to prescribe any?

I agree with Shelly that you need very good pressure relief products. xx

[shelly21]

Madge oh I'm so sorry you are in this state.

Do you have alternating air mattress? Also they do seat cushions that are air alternative.
they really need to address the sores.

I'm not far off re not managing to feed myself.

When I hear re mattress topper its usually the repose type and that just wasn't good enough as it doesn't alter pressure etc x

[Madge]

Thank you all for your responses. I’m now having trouble to feed myself, I can’t get the spoon to my mouth or pick up items 😖 it’s so depressing x palliative nurse visited today, the blisters are on my bottom cheeks, I’ve also had a bad bout of thrush which has been very unpleasant. One blister has burst but the others still have fluid but no infection but she said it could be friction or from the thrush. She is going to get me a mattress topper to make it softer for me and some dressings for me 😢
to make me feel better I had reflexology which was lovely 😊

[Jane]

My MND started in my right hand and one of the first things I noticed, over a year before dignosis, was that I couldn't hold a teaspoon while on a very cold evening on a camping holiday. Even now, two years later, I can hold a spoon when my hands are warm, but not when they're cold. Also holding a pen or pencil to write is far more difficult when my hands are cold. And typing too. But I don't notice the cold weather affecting any other symptoms. They are all getting gradually worse, but that's the nature of MND unfortunately.
No experience of blisters up to now.

[Patw]

the cold is a no go I went swimming in the sea last March couldn't move and my jaw locked. bit different but I'm getting hiccups alot any body experience this ? i have no cough or any thing else