I don’t want anyone else to go through what i’ve been through. For 4 long years i haven’t been ‘allowed’to eat but thanks to communicating on ths ipad which i use as an AAC communication device, i have got across my need to eat real food and not just be PEG fed. I was dehumanised and I want all those who are PEG fed to know that with some basic exercises you can build up your chew muscles and tongue quickly. Please get in touch if you need any advice or encouragement.
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Hi, it’s posts like this that make this such a useful community and hopefully you will help lots of people who are being PEG fed. Thank you for sharing.
Regards Sue
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Thank you for speaking out (via your device) Mitch.
It is so important to be heard.
In fact isn’t that the very first thing a newly born baby does?
That first cry yelling out “I am here” “Notice me” “I have needs” is the most important first stage.
After stroke
The analogy between the effects of stroke and a rebirth goes to show how important it is to heard, to be recognised and for one’s needs to be addressed.
In the series Breaking Bad there is a villainous character, Hector Salamanca, who sits unable to speak and disabled in a wheel chair.
He communicates with his mobsters with a bell, I don’t suggest imitating his villainy but having a means to gain attention is an essential item.
He is an anti-hero for me. A villain with a purpose.
keep on keepin’ on
Another anti-hero Andy Pipkin who gives me miles of smiles
I do love the politically incorrect 
stand up for yourself !!
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Glad you are now being listened too and are making progress with your eating. I am sure it has made a massive difference to how yiu feel.
Thanks for sharing your experiences it will definitely show others that there is hope.
Best wishes
Ann
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Thank you Anne @Mrs5K i feel more human and less like a device that needs charging. Eating is inherently human, and i was dehumanised for 4 years not’allowed’ to eat my mental health has returned to ‘normal’ and i’m glad to be alive for the first time in years! Yes i live from one meal to the next but i lack purpose now that i’m unemployable.
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Hang in there Mich ; you think therefore you are !
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Thank you @pando i often feel invisible and dehumanised. Nobody seems to understand that my iPad is my voice and without it I can’t communicate.just this afternoon I went to a very important ENT appointment and even though I asked for the iPad charger I wasn’t given it and it died in the middle of the consultation so I gesticulated that I needed to write,so I was given pen and paper.
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well done - keep fighting until you are heard - your readers here are listening
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This is a nightmare type scenario and one that used to worry me - in my case it was the phone battery running out (I had an old 3G phone and the battery was old and held charge for only a couple of hours). Though I did not need it in the same way as you need your iPad, I used to worry that I would not be able to make or receive calls.
To address this I did two things:
- Carry my own charger with me
- Turn off the phone when not in use to preserve the battery and turn it on to check for messages.
After I started doing this, I no longer worried about being uncontactable.
Is it possible for you to carry your charger with you?
Also, you can buy “Portable Power Banks” which as I understand it are like external portable batteries for Mobile devices.
Below is a link to an example that might be suitable for you, but depending on your iPad I am sure you or someone will be able to check to see which one is suitable.
Power chargers - External “batteries” for mobile devices
This might be a worthwhile investment for you as you are using your iPad as a communications device.
I hopes this helps.
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