Yes - businesses are crafty 
Do the hard sell, promise the earth and take your money âŚ
⌠now I bet you didnât expect that end of sentence 
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Mich, thank for reply. When younger I made the most of my birthdate by claiming to be a Witch of the New Forest Coven. I said I could remove warts and could give half an evil eye on anyone who offended me.
I actually joined the New Forest Coven by buying a ticket in one of their raffles many years ago when they were trying to revive their following in an amusing light way. Actually Witches covens were banned by the church in the fifteenth century!
Deigh
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Hello @ManjiB i wanted to know if your ohp hypothetical person canât speak because the person had a left hemisphere stroke thus affecting the speech centre or because your hypothetical person had a trachiostomy? Are they getting SALT?
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Hi Michelle - So the OHP is actually my Mum as I am sure you have now worked out.
The stroke is the culprit - it damaged a huge part of Mumâs brain possibly 3/4 of the brain and left her right side paralysed, unable to speak and they (experts) have kept her nil-by-mouth and not managed that making things worse whereby she now has a buried bumper (so original PEG is useless) which they will not operate on as she is deemed to be too fragile and it might kill her.
Everything she has had has been superficial/minimal and she has never been given the chance to satisfactorily demonstrate her true potential. So the SaLT gave up on her after two or three noddy attempts to see if she would respond leaving us with instructions to keep trying to give her water and if she responds to contact them (SaLT). That was four or five years ago and following a bad experience with a hospital nurse who tried to forcefully clean Mumâs mouth, Mum clamped up and nobody got anywhere near her mouth for a very long time. Even doctors couldnât do the âopen your mouth and say aaaaaaaaaaahâ.
As a result, her mouth has now got thick layers of plaque, but mother nature and Mum are great pals and so somehow, her mouth is very healthy apart from the plaque and no brushing for nearly five years 
The left hemisphere stroke is what is affecting her speech, but she is trying to speak. She says things but we canât make out the words. She listens and responds to a lot of things which leads us to think she is fully aware of what is being said and what is going on (maybe not 100% but certainly the basics).
Her story is quite remarkable, she is remarkable and her story continues.
In the main, she has had to endure all this purely because of her age, even though we keep telling everyone and all the time, her biological age is at least 30 years less than her chronological age and her physical condition is quite remarkable for someone who has been âimmobileâ for the best part of six years.
Right now, and sadly, as someone else on this forum answered when asked a similar question âWe (Mumâs family) are her care teamâ. We are the doctor, nurse, PT/OT etc. Now, you might think that arrogant of me to say that, but there is another saying I recently came across and which I like very much, âNo brag, just fact!â.
Today, I gave Mum a full glass of water and she drank it.
About two months ago (I lose track of time as it is now irrelevant) she accepted a spoonful of water which I offered her - this was the first time since she clamped up as mentioned above.
Next day, I repeated the exercise and then the next day and the next âŚ
⌠gradually building up and so from a tablespoon of water she comfortably manages a glass.
Do I want to call the SaLT?
Not particularly. Why waste time when Mum and Mother Nature are doing it themselves.
If I may say so, this remarkable story has a long way to go. Luckily, quite a bit of it is now posted in this forum. One day I may collate it and write a book on how a nonagenarian survived a stroke and lived to tell the tale - which she will
Sorry of this is coming across as bombastic or arrogant. It is not meant to be - we are on this forum for 1) to see how we can learn from others and 2) how we can help/inspire others.
We believe in ourselves, we have confidence in our abilities and we listen to all that others have to say and then we do what is right for us.
A wise man once told me âSon, listen to all, do as you see fitâ - it is translated from another language but it is probably as close as I can get That wise man was none other than my Dad
Namaste|
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Thank you @ManjiB your mum ohp, theoretical person sounds indeed like she is remarkable. And so are you for looking after her so lovingly and diligently
Sheâs fought against all ods and that tells me how much she loves you and your sister, sheâs not ready to give up and wants to be around you both for as long as possible. I hear your frustrations. As parents sorry you havenât mentioned if you are one we teach our children to eat, walk and talk with no 'expertsâto guide us but we manage nevertheless. And i proudly now have three adults who iâve taught everything they know, i homeschooled them. And if i had done it under the watchful eye of todayâs soceity i would have been terrified by risk assessment etc.! Be brave with your mum sheâs moving forward thanks to you. And donât you forget it!
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I had moved away from this site purely by accident, My computer crashed and on re-building this site was not on my Bookmark list. I have a need to keep in contact with other stroke victims and found some satisfaction using StrokeNet mininit chat. It wasnt till you mentioned my absence that that a message was sent to me and replying to it has got me back to trying to keep up with communications.
I seem to have forgotten how to get the best of the site and today would like to answer a question by someone who is planning early retirement to help his wife survive a stroke.
Trouble is the my memory wont let me get back to that enquirer. Can anyone help me with this?
Deigh
Hi @Deigh
Good to hear you are doing well. IT is great when it works isnât it. I find that if it breaks these days I am less able to cope with it than prior to my stroke â although to be fair I always found it to be a nightmare. I had been thinking about you a lot recently as we hadnât heard from you for a while and am pleased to hear that you are well.
You can do a search on the site using the magnifying glass and putting in some key words / or a key word. I have had a search through and come across this post:
Is this the one you mean?
Hope all good in New Zealand.
Best wishess
Ann
Thanks for that. Yes, it was the right one and Iâve replied to it.
One of the reasons I stopped using this site was because I found navigating it was tricky and I do not need extra problems!
regards
Deigh
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It has been good to see you back regardless, take care.
My daughter is in this position now but unfortunately private physios in our area are ÂŁ80 per session. And we just canât afford it.
Itâs heartbreaking
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Have you used up your community care allowance physio? If not, get a GP referral for it.
Or, you can try and get a GP referral anyway. Explain your daughter has made improvements and would benefit further from some more physio.
Private is expensive (it ranged from ÂŁ100 - ÂŁ120) here and some offered a small discount if you took more than 10 sessions.
We tried it, and were rather disappointed. For us, it did not work out for a number of reasons:
- Mum really needs someone exceptional with a neurophysio specialisation, which is what we bought, but they did not live up to expectations.
- Being in her mid-90s the physios are âscaredâ to âpushâ her. We got the sales pitch, but when it came to delivery it fell flat pretty early on. We persevered and took 13 sessions and I would suggest the last ten were a total waste of money and possibly the whole package was a waste.
- Communication between physio and patient was difficult as Mum needs an advocate and the physios struggled to fully understand the needs.
Never mind it was an experience.
If you can get something from the NHS, you can then get printouts from them so that your daughter can do these by herself with help from family/friends as appropriate - that is pretty much what we do now.
Also, social media outlets such as YouTube, Instagram, Facebook etc. have videos that you can watch and follow - they are not going to cost you anything, just time, so I think if you can find a few good ones for your daughterâs needs this is a very good way forward.
I wish you and your daughter all the best.
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Community stroke team have said she hadnât met their goals so canât give any more physio.
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Sadly this happens too often 
We had this with Mum and most of it was their own doing because they did not provide the initial PT in a timely manner which meant Mum got weaker and then they did the assessments when Mum was tired or they would wake her up from her sleep and expect her to be ready for assessment - this was still in hospital. Then once discharged to home care, it was the same as in the community PT would come to do a token session and then report back that Mum did not respond or was not alert enough etc.
In the end we did what we could based on what they had left us (some printed sheets with exercises - you might be able find some on your councils website). Then after 6 months we asked to GP to make a new referral. We got pushback initially based on telephone Q&A which we challenged and then we managed to get 6 sessions - not enough but better than nothing.
Maybe you can do the same. Do some strength building etc. and then after 3 months or 6 months when your daughter is stronger try again.
sheâs in care home physio left some stretch exercises to do in bed. For carers to do but donât think they have time to do them regular I try to do them when I go in but itâs her balance she needs physio for
She didnât get much physio the 6 month she was in hospital either
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Hereâs what we did to help Mum with her balance.
We sit her on the edge of her bed and let her work out / get her bearings and as she sways, support her to upright.
Mum is now able to sit (balanced) on the edge of the bed for up to 40 minutes, self supporting and self adjusting.
Also, when Mum is sitting in Riser recliner chair, we tilt it to the max so she is almost standing and then itâs a matter of getting used to position and sensory awareness.
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With her being in care home this wouldnât be allowed to sit her on bed Incase of accident. And we couldnât either as would need to hoist her on without experience it would be to dangerous
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Since the last time I was here life became a disaster. After Xmas there was a lot of uneaten chocolate in the house. Being a choconut I decided that as long as I took it easy I could solve the problem. Started off with one piece a day as well as the two cubes of dark nut chocolate that I take to help with my pills! Got away with it so increased to two and disaster hit me. couldnt concentrate or sleep and brain kept adding 1 + 1 and making it -2 so life was like being in hell and I was hoping to die. In the rare clear headed time I had I discussed it with Valerie and we decided to cut out the extra chocolate and also change the order I was taking some pill. This made no difference but I carried on hoping a better idea hit me. This morning I had to rise at 5am so my son could drive us to mid town hospital for Rituximab treatment. I woke at 2 am and to my surprise was having a dream, something Iâd not had for months. Wondering if my problem was solved, I checked and found I could actually concentrate. Taking a gamble I took a sleeping tablet and when my wife woke me at 5am I found that I was back in the land of the living! This was staggeringly exciting since Iâd not expected to survive the problem at all. The rest of the day has been a bit of a dream but I darent go to bed for long or that will spoil tonights sleep. So Iâm feeling great knowing that I still have two lives spare to catch up with my cat.
Deigh.
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Itâs so good to read something like this - life is full of surprises.
Thank you for sharing 
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Brilliant, been looking for this answer for days. now can use it on the daily chat programs I share with other stroke victims.
Thanks again,
Deigh
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