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missmandikat
12th February 2019, 22:57
Hi everyone,
Can anyone give me advice on something I have noted with my husband in last few days.
He is getting much weaker and now I have to help him in the shower and drying himself. I noticed unusual skin marks on his back just at the top of his bottom. He has also become very uncomfortable sitting, says he is sore. Tonight I tried to look closer without hurting or being too personal and the skin marks go into creases of his bottom, skin is not broken but rash like.
I hope this isn't too personal I`m just not sure what to do to make him comfortable.
I will check with the doctor tomorrow for advice too,
Amanda X

Kayleigh
12th February 2019, 23:46
Hi Amanda,

I don't know if there are any skin conditions particularly related to MND, but if the rash is itchy it could be something like eczema.

I think you are doing the right thing by getting advice from the doctor tomorrow, because there is probably more than one skin condition that it could be.

Hopefully the doctor will able to prescribe some medication to clear the rash up.

I hope all goes well tomorrow.

Best wishes,
Kayleigh

Ellie
13th February 2019, 12:25
Hi Amanda,

Things to look out for with changes in skin include pressure areas and fungal infections.

If he is now sitting down more and not changing position, he'll need a good supportive cushion which relieves any pressure points. The OT can assess him for this.

People who can't dry themselves fully, then sit for long periods in the one position, can get fungal infections particularly in areas where sweat may build up. These areas can get quite sore, but are treatable.

I hope the GP can help but you might find his Community Nurse more knowledgeable if it's a skin integrity issue.

Best wishes,

Love Ellie.

Terry
13th February 2019, 13:15
Hi Amanda;

I have a area that gets very sore and itchy under my ribs where the skin folds when I'm sitting. I now use "Bepanthen" they use it on new tattoos and for nappy rash. It could work.

As Ellie says, get a OT to try to make sure his sitting correctly and on a suitable cushion.

My shins have discoloured but my other skin seems to not have.

Love Terry

Lynne K
13th February 2019, 14:28
Hi Amanda. I had the same eczema type rash in the same place. Mine was caused by how I sit with a cushion on our settee. I put the cushion low down in a particular place that supports my dodgy spine. I scrunch the cushion in exactly the right place then sit wedged against it. It saves me getting a very bad back pain episode (that can last weeks). I've had eczema elsewhere over the years, unrelated to MND. I improved my rash with less sitting down and some eczema cream. I have to keep an eye on this, not literally :) Lynne

missmandikat
13th February 2019, 19:47
Thank you everyone for replying, I have the OT coming tomorrow afternoon and I have a doctors appointment in the morning so hopefully will get some medical advice too. Thank you all for your time in replying xx

missmandikat
14th February 2019, 20:37
So the doctor today gave us some cream for Richards problem, which thankfully he says isn't a pressure sore. Hopefully it will clear the problem up and make him more comfortable in the next few days. Unfortunately things are moving on and we now have a bed being delivered for downstairs as it is becoming unsafe for him to navigate the stairs. All this change is hard to deal with, the upheaval of the house to accommodate things, but you do what you have to do. I`m the well one so in the scheme of things I shouldn't get sad with what Richard has to deal with, but its hard :-(

Deb
14th February 2019, 21:15
Aw Amanda .. Every change is really hard to deal with but it's good that it's not a pressure sore.

Don't feel bad if you're having a low day... As a carer, it's hard for you. I have MND and my husband always says we're in this together but I know he gets down too. It's hard to see someone you love struggling.

Make sure you look after yourself. too.
Love Debbie x

missmandikat
14th February 2019, 22:32
Thank you Debbie, love to you too xx

Terry
15th February 2019, 00:37
Hi Amanda,

I am sure that it is equally hard being the carer as well so don't be too hard on yourself.

Hugs Terry

shrew
15th February 2019, 06:53
Hi Amanda, hope the cream does the trick. I hope the downstairs arrangement works out for you, that's my worry, we dont have a loo downstairs

missmandikat
15th February 2019, 13:01
Thank you Terry. :-)

missmandikat
15th February 2019, 13:09
Unfortunately our stairs could not accommodate a stair lift, so it is great we have a toilet downstairs too. I hope that when the time comes Shrew, hopefully a good time away, you are able to sort something. When I think where we were 2 months back I don't know how we have sorted what we have, but you just do don't you. So I expect the next few months will be the same, in that whatever is thrown our way we get through it. x

Ellie
15th February 2019, 13:16
Hi Amanda,

Good to hear Richard's skin issue isn't the start of a pressure sore - did GP say what caused the skin discolouration?

You're right, upheaval and change is hard on both of you, but physically it should be easer for you both from the get go, psychologically, hmmm, that takes a while...

Given Richard's progression, if he hasn't been recently assessed by his OT, it's worth him having one.

I hope you manage to have some quality "me time" - MND is an intensely selfish disease, it's too easy to let it consume you, so a break from it is very important for you, even if it's a few hours. Your health and wellbeing are equally important to Richard's.

Love Ellie.

missmandikat
15th February 2019, 21:54
Thanks Ellie, yes we were glad it wasn't. Not sure what the rash is maybe some reaction to medication, was vague but said this cream would make more comfortable. The OT has been this week, we now have a bed downstairs and a commode, and she is chasing the people who do the assessments. Thanks for your kindness, next week I hope to visit a very good friend of mine for a few hours, maybe get a stroll on the beach which I enjoy, love Amanda

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