This heat and Moisture Lesion.

[Derek1uk]

Couple of questions:How does everyone cope at night with this heat in the UK? My wife has a fan next to her bed but she's on a B-pap machine to provide her with Oxygen and she has Sleep Apnea (Obstructive and Central). She's developed a water Lesion on her Sacrum (between both buttocks at the top) and has been advised to lie on her side which is difficult due to uncomfortable and not easy with Msa as she normally sleeps on her back at 30 degree angle using a profile bed and airflow mattress.

[Paul_and_Sue_Wood]

Derek

This sounds very much like my wife.

I control the room temperature with a fan or I do have an air conditioning unit.

As some MSA sufferers can not "feel" hot or cold or their system control there own body heat the only thing I can do is make sure the environment temperature is around 20C, which is comfortable.

Sue also has the same or worse sweat issue, as she also doesn't move and sleeps at 45% so we clean the area very regularly. We have district nurses visits every week to help control this along with bed sores.

Regards

Paul

[Derek1uk in reply to Paul_and_Sue_Wood]

Thanks very much for the reply Paul and I'm sorry to hear about your wife having this terrible condition, how long are you both into this journey may I ask??

[Paul_and_Sue_Wood in reply to Derek1uk]

Derek

Sue stopped working in 2008 as she was dropping things, falling over, loosing concentration and more. We got a diagnosis in 2016 and we are still here.

It's all about managing risk and keeping motivated.

Always happy to chat to people on a video call.

Where are you based?

Paul

[Derek1uk in reply to Paul_and_Sue_Wood]

Hi Paul, Greater Manchester UK. We've attended some of the Face to Face meetings that the Msa trust run but now Jackie isn't going out we do the Digital ones instead. Sadly things are going worse quite quickly, we've had the Palliative nurse over and she's put pain/comfort injection meds in place for us to store for the district nurses to administer when the time comes. My wife's also discussed her end of life pathway with the hospice so at least she's got that in place. It's horrible seeing this happen to someone I've spent the last 30yrs with......... heartbreaking.

[Paul_and_Sue_Wood in reply to Derek1uk]

Derek I feel for you as I watch sue face a new challenge...