For the first time in 21 months I had a shower, this morning! Normally I’m strip washed by a carer on my commode. This morning, however, I went into the shower. We’ve got 2 shower chairs and 3 grab rails. The heat was full on, but it still felt cold.
Anyway I look forward to the next shower. Onwards and upwards.
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Its all good progress well worth a little celebration 
It must feel weird though if you can’t feel the heat of it on your stroke…assuming you can feel it on your good side 
Lorraine
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Apparently the water was very hot. Since my last stroke the right side of my body has felt very cold. However, I wasn’t expecting hot water to feel cold! Anyway I hope my experience encourages others to never give up. I feel envigorated for just having a shower. Finding out how to get in and out the cubicle was a learning curve, as was using the soap and flannel!
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It’s also an exercise in itself 
Keep up the good work, onwards and upwards😁
Lorraine
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What a wonderful post - thank you 
I imagine it will indeed as you hope, inspire and encourage others to never give up.
I wonder if there is any need for caution with regards to the temperature of the water?
If you are not able to feel the actual temperature of the water, is it possible you could burn your skin by having the temperature too high?
I ask because as carer for my Mum we always have to be careful with things as she bruises so easily and so we can’t apply too much pressure or when washing the water temperature should not be too high.
I have been trying out “ice therapy” by rubbing ice cubes on any inflammations to cool them down and notice she might not be aware of the cold ice whilst the skin is getting red, though it does return to normal as blood circulation increases (btw this leads me think “ice therapy” might work).
Talking of showers, which we are, I actually also had a shower today, though mine was unexpected. I was out walking in the sun and before I got back the clouds had gathered, and I was walking in a shower. It was quite nice actually -spring showers 
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My stroke has left me with left sided partial numbness and loss of temperature sensation. I don’t feel the temp of the water down my left only the water hitting my skin. Cold water is painful though. The worst part is not knowing you’re not fully dry afterwards. You start getting dressed and then clothes are sticking to you because you’re still damp. You don’t actually feel water only the temperature difference it creates on your skin.
Darren
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Luckily my wife dries me, so I don’t have that problem. My wife also reaches into the shower to wash the parts I can’t reach!
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Thanks for your concern. No, the boiler outlet temperature is set hand hot, so the water never burns. It just feels freezing! It’s my sensation since I had my second stroke. I sleep with a padded eye blackout mask around my face to keep it warm throughout the night! I have to have it washed every 3 nights because of the dribble. I have to spit out all the time because I’m on a PEG and am unable to swallow. But hey, I’m using the toilet upstairs, I’m sleeping upstairs, I’m showering and I’m going out on my electric wheelchair. All within 21 months of being written off and spending my limited days in bed in a care home! Onwards and upwards!
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Thank you for your kind words. The water wasn’t as cold on my good side, but it wasn’t as freezing as my stroke, right, side.
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Shes a good one!
My dad said after his TIA you don’t want sympathy of everyone, just their support.
Darren
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I hate my wife doing anything for me. However, she assures me that she does it for one reason, only. My wife loves me! We’ve been married 41 years. Apart from that she says that she married me in sickness and in health!
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Great to hear you’ve had a shower, I’m sure that must feel amazing - apart from the water feeling cold. I’m sure this will help to inspire others to not give up! 
Thank you. I hope it will encourage others not to give up. 17 months ago I was sleeping downstairs, getting out of bed on an Arjo, having a strip wash and being house bound. Slowly I’m surmounting these issues. I’ve had some pretty dark times where I wished I was dead, but I’ve got over them. Now I feel alive again and can’t wait to see what the day will bring.
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Hi Philip @PhilipS
Good to know you have things under control
It’s so nice that you have a lovely and loving wife helping you.
41 years married - my heartiest congratulations
Well done you for not being written off
Looking forward for an update from you on the 2nd anniversary of not being written off and maybe the highlights of that time?
If I may, I’d like to ask you about your PEG situation.
I am a carer and my Mum has been PEG fed (and watered and medicated) ever since she had her stroke (well since 2 months after her stroke). Her stroke was severe and destroying quite a large part of her brain, possible 2/3 to 3/4 and she wasn’t given much of chance. Nevertheless, she is still here but whilst we have managed to rid her of some of the other things that were enforced on her, she “refuses” to give up the PEG.
I don’t know what it is, but whenever she is offered food, water or anything by mouth, she simply refuses. She never seems to feel hungry or thirsty (which I believe is down to the strict dietary regimen whereby she gets her meals and fluids to a fairly rigid timetable e.g. breakfast, lunch and supper etc.) It appears she is always satiated.
Whenever the SaLT (Speech and Language Therapist) tried to see if she was OK to take food and water by mouth Mum always blanked her out and so the SaLT never signed Mum off. Sadly, Mum was not given much help in any of the things she needed for a good recovery, but like you (also having been written off) she fought on and as proved them wrong and continues to prove them wrong, though it gets harder as they [still] keep closing the doors 
We looked after the PEG as per text book instructions i.e. clean, advance and rotate, don’t give fizzy drinks etc. etc. but despite all this, we have had problems especially after the 2 year time elapsed. PEG site started to get infected and then advance and rotate became difficult.
The Abbott’s Nurse who was the expert on the PEG used to visit when we called him but he never expressed concern or made a referral to the hospital specialist. Then one day the PEG tube became a “buried bumper” - we could not advance it or rotate it and it got blocked. We ended up in A&E and to cut a long story short we have been told, this is it. We have to live with it.
I have documented this in other posts on this forum and so for now I’ll not go into more detail at the risk of losing your attention
I would like to know
- how long you have been on the PEG?
- how you have managed living with the PEG
- any problems you may have encountered and how you overcame them
- how you feel about being on the PEG
- have you had any support/follow-ups related to the PEG
I have numbered the above to help me in case I need to follow-up
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Well done! This time next week we will hopefully be reporting that my husband has had his first shower. Workmen were supposed to start removing bath and putting in new shower and cubicle etc tomorrow but it is now Wed.
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@PhilipS that’s amazing & I bet that shower felt great even if you couldn’t feel the temperature. You might find the more you shower that the temperature feeling starts to improve. You just never know.
Considering how you were after your stroke & the fact that the professionals didn’t give you much hope of progression you have come a long way & I have no doubt you have the determination to go further. Won’t it be lovely to go back to the sytoke ream & say look how well I am doing.
Best wishes
Ann
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Hi @ManjiB I don’t mind answering your PEG questions.
1 I had my stroke on my 63rd birthday July 2023. I was nasally fed at first until the September 2023 when they decided to fit a PEG. I’ve had one ever since. I’m fed water, feed and medication through the PEG. It’s surprising how many drugs my wife has to grind up!
2 I’m fed through the PEG for 12.5 hours at 100ml per hour. I was lactose intolerant and so the initial feeds were lactose free soya. When this was improved by adding fibre , I was sick. So I’m stuck with soya feed, no added fibre. I’ve thought of being fed through the night, but we mange to go out throughout the day with a backpack on my wheelchair pumping away. So I’ll stick with daytime. I spit out once every 2 minutes. I use a large green Tupperware cup, for which I take a lid when we go out. My wife prepares me a side plate of her evening meal which I chew and spit out. I can still taste everything! The Speech and Language therapist signed me off because a video fluoroscopy showed that I couldn’t swallow. I’ve seen a specialist surgeon and he said there was nothing he could do at present (March 2024).
3 I did have a redness develop around the tube site, so I was prescribed an anti thrush cream. That appeared to solve the problem. My wife uses boiled water to clean the PEG site first thing in the morning, 7:45am and last thing at night 9:45pm. She also cleans and rotates the PEG every week on a Monday.
4 The PEG seems here for good but if it only takes 5 years to swallow again, hey ho. I still taste food and there is the hope of neuroplasty!
5 The dietician has kept in touch. Nutricia have kept in touch. I have lost 8 stone in the past 21 months. I hadn’t lost any weight since having my first stroke in 2016! Surprising what not eating does to you! I’ve had to buy an entire wardrobe. I’m down from 4XL to XL/L now. My reflection has taken some getting used to. Especially my turtle neck. lol.
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Hi @Mrs5K it would be nice, but I doubt it’s the same stroke team!
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Hi @trisha2 we waited over 18 weeks for a joiner to come and reverse a bathroom door for the toilet!
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