So many obstacles with PSP : Hi friends it's... - PSP Association

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So many obstacles with PSP

Cinderella80 profile image
16 Replies

Hi friends it's been heartbreaking. Just when you think you have found a solution there comes another obstacle on that path. Because my mum has lost so much weight I noticed that skin on her spine looked abnormal and discoloured. I got worried and called the district nurse she wouldn't come out until I told her the bedsore was on her spine. She told me it was at the beginning stage and the skin is not yet broken. She just but a plaster on it and told me to keep mum upright mostly. Mum is always so tired and wants to lay down most of the time. I'm worried. If anyone has gone through the same thing know of any solutions or creams to help to heal the bedsore and prevent them. Also I used to walk mum to the bathroom so she can stay a bit mobile but when she walks it's on her tip toes or her toes are splayed and she walks on her heels. Even her eating has slowed down considerably she gets very tired. It's just so awful to see. It's like everytime I find a solution something else appears in a short space of time. My heart goes out to all of you brave and strong people out there going through the same thing ❤

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Cinderella80
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16 Replies
Abrecheisen53 profile image
Abrecheisen53

Hi! Bedsores are so wicked. I was lucky to move John from his chair to his bed until his last week. I had a body pillow that I used at night and that final week, so I could continue to turn him. I elevated his feet on additional pillows as well. Unfortunately, in the last days before he passed, he developed bedsores on the heels of his feet. Perhaps a body pillow and strategically placed pillows will also help your mom. Good luck to you.

Strength and courage, Alice ❤️

Cinderella80 profile image
Cinderella80 in reply toAbrecheisen53

Thank you so much for taking the time out to reply. Thank you for your helpful suggestions I will get some more pillows and try to move mum around them. Bedsores are awful. Thank you again. 🌷

MRSYafffle profile image
MRSYafffle

Sending lots of love to you both, really heartbreaking 💔 I haven't encountered bedsores but the pillow solution sounds helpful..

Brought me to tears reading this, I feel your journey and I know how painful it is, sending you both lots of love xx

Cinderella80 profile image
Cinderella80 in reply toMRSYafffle

Thank you for taking the time out to respond. Really appreciated. Thank you. 🌷

MRSYafffle profile image
MRSYafffle in reply toCinderella80

I think all our journeys are helping and informing us all here. I hope your mum has found some relief. I've had quite the day here, be kind to yourself, sending loads of love your way ❤

Hi Ciderella80!

This is my information hoping is useful.

Bedsores

Bedsores are pressure ulcers. These ulcers are injuries difficult to heal, and it is the main problem faced by people immobilized for a long time.

The best treatment is always its prevention, especially with scrubs and postural changes.

General care: hyperproteic diet, fluid and electrolyte intake to avoid dehydration, correction of blood glucose levels.

Local care: monitor body support points and apply Corpitol Oil Sprayer by gently massaging the skin. It helps to restore the capillary action of the areas that are most easily necrotic and thus promotes circulation.

Corpitol sprayer composition:

Hyperoxygenated glycerides of essential fatty acids (linoleic and linolenic), palmitic and stearic, phytosterols, tocopherols (Vitamin E).

If the bedsore wound has already appeared, consult a physician.

Use mechanical wheelchairs with seat belt and anti-bedsore cushions (our anti-bedsores cushions: SYSTAM and JAY - Sunrise Medical Ltd or similar).

There are also air bubble mattresses with changing pressure that prevent a certain part of the back from being continuously subjected to the pressure exerted by the weight of the body.

Hug and luck.

Luis

Cinderella80 profile image
Cinderella80 in reply toLuisRodicioRodicio

Thank you for taking the time out to respond. Really appreciate all this information. Thank you so much. 🌷

AliBee1 profile image
AliBee1

Hi. So sorry to hear of your Mum's latest problems. If possible get an OT assessment done again and if they think that your Mum is likely to develop a bedsore they should be able to supply you with a pressure mattress. Good luck. AliBee

Cinderella80 profile image
Cinderella80 in reply toAliBee1

Thank you for responding. We have bought ourselves a pressure mattress. As all the healthcare workers are so busy. Thedistrict nurse said she would order one but I wouldn't hold my breath for that. Thank you again. 🌷

This is go to for it all!! Bed sores cleared out in a few days. We use on face where my loved one is always got a river of drool.

Cream for complications
Cinderella80 profile image
Cinderella80 in reply toStephanielayell82

Thank you so much! And thank you for taking the time out to respond. This is so helpful. I will be looking into this. Someone suggested nappy rash cream for babies. Thank you again. 🌷

Doublereeder profile image
Doublereeder in reply toCinderella80

Haven't tried it for bedsores but sudocream works well on most things. Nappy rash in dim and distant past but sunburn in summer so that may help too.

bichonbear1 profile image
bichonbear1

Hi, my mum gets bedsores on her bottom and heels. We try to place mum in different positions to minimise their development. We use a hoist to move mum into the lounge for a few hours a day, lying in the recliner chair is a different position to the bed so that helps I think. We also have a hospital bed and air mattress. The bed can place mum in different positions and the air mattress helps. An occupational therapist can organise the bed and mattress. It is worth considering. It’s hard and upsetting coping with these things, my thoughts are with you. Hope this helps.

Cinderella80 profile image
Cinderella80 in reply tobichonbear1

Thank you so much for taking the time out to respond. Your information is so helpful. Our OT has disappeared again after providing us with a chair for the bathroom. I was trying to avoid a hospital bed for mum as I wanted her to feel as normal as possible. But looks like with a heavy heart a hospital bed may be the next step. Thank you again. 🌷

AlliD profile image
AlliD

Hello, my husband had horrendous bed sores due to being bed ridden and incontinent due to PSP. His district nurse prescribed Medi Honey which is a fantastic healing cream. He has it on prescription but you can buy it on Amazon. Hope this helps.

Cinderella80 profile image
Cinderella80 in reply toAlliD

Thank you for taking the time out to respond . It is very much appreciated. Thank you I will probably have a look on Amazon as our gp and district nurses are not bothered at all. Thank you again. 🌷

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