As I’ve told everyone here before I’ve just learned to eat normal food.i’m yet to learn to speak.my ability to speak was taken from me when doctors inserted a tracheostomy tube:a plastic tube that goes through the neck into the trachea to aid breathing. A quick google tells me 15,000 to 17,000 adults who have had a stroke are fitted with a tracheostomy,but I’ve met stroke survivors here in the uk who were not and therefore maintained the ability to speak,which a tracheostomy takes away from you because the vocal chords are cut off from air by the procedure. I’m hopeful that like a baby I will learn to speak again as I’ve learned to eat again.
Your situation did resonate with me. I had an Ischemic Stroke affecting mainly my Cerebellum over 6 years ago. After life saving surgery I had a tracheotomy fitted. This was removed after about 6 months. I spent 9 months in hospital. Initially I couldn’t speak at all and though I can now form words (I suffer from Dysarthria) my speech is very difficult.
Unfortunately I cannot eat or drink (nil-by-mouth) and am peg fed through my stomach. My swallow does not work and Consultants are unsure whether this and my speech are related to the tracheotomy. Or just part of the Stroke?
I continue working hard in the hope they will return. Keep fighting.
Hello @Hayeam.if you had a cerebellar stroke you will know that your coordination is affected, i’m utterly convinced even though no medical ‘expert can confirm, that the trachiostomy took my voice not the stroke or aneurysm. I began eating even though SALT’s were reluctant about 4 months ago and this was a huge game changer for me as the PEG dehumanised me making me feel like a robot or device that needs charging. Your ability to swallow without aspirating will return, mine has. But am eating with knowledge of the risks. Eating is not just about taking on nutrients there is a psychological component as well as an element of ear helth because chewing contracts the muscles around the eustatian tubes moving ear wax. My quality of life has improved exponentially since starting to eat again.
Great that you’re eating again. Yes last time I went for a videofluroscopy I was told there was no change to my ability to swallow. I’m happy to take risks and try.
Did you just eat gradually to start and could you consume fluids?
Any recommendations on what to eat first and how often. I realise I will have to consult a medical professional, just to let them know what I have decided to do.
I am sorry the PEG has made you feel as above and hopefully you will feel better once it has been removed which I hope is now on the horizon. I can’t say for sure how Mum feels about her PEG as she has not been able to verbalise, but she never tried to pull it out or even look at it in a curious manner. My guess is she understood what it is when it was explained to her post insertion and on subsequent occasions. It’s a massive shame it has become a buried bumper and may never be removed now as the consultants thinks the procedure would be too risky for us.
Despite the reservations and negative connotations about it, we are grateful that it was something that was offered to her way back when as without it we would not have had our Mum to be with us as the stroke nearly took her from us. I think inserting the PEG was one of better things the stroke team did for Mum.
I wish everyone using a PEG a successful safe swallow recovery and removal of the PEG tube and to feel humanised again.
Just thought I’d slip in here regarding drinking fluids for the first time. I coughed and spluttered and choked on every sip of liquid I took in the beginning. Mine wasn’t a severe stroke but my speech definitely went after it, and every bite or sip was always a risk of coughing and chocking. But because my stroke was only supposed to be mild, that issue was never addressed. And because I couldn’t communicate I couldn’t query anything.
So I very quickly learned how to manage the issue myself or starve. Such as, small bites/sips, be sitting comfortably upright when consuming anything. Do not even attempt to talk with food in your mouth. Mealtimes were always a rehab exercise.
You can get thickeners for liquids which would make them more comfortable to swallow without chocking, but I’ve never tried them myself. It can take a long time to get over the coughing and chocking stage but it is doable.
The main risk you need to aware of at all times, is the risk of getting any food/drink particles into your lung from the windpipe. Which can happen if you can’t clear your windpipe through coughing. That always runs the risk of chest infections.
So, if you are going to test this out, can I suggest you try it with something like dissolved to liquid jelly cubes or something similar that will slide down easily without coating any part of your mouth or throat. Also it would be better if it is at least the same temperature as your mouth or a lttle warmer as opposed to cold tap water…a little less breathtaking
Hello @Hayeam i still aspirate a little with all fluids butmy cough is strong and i bring up whatever i aspirate, those around me get afraid and rush to call nurses, hit me on the back etc. One nurse refused to allow me to eat toast. But i have a couple of carers/HCA’s on my side, and say she has mental capacity she can make decisions for herself. I found thickened fluids disgusting I strengthened my chew/mastication muscles with bread, toast, mashed potato steamed fish. Yoghurt is great for swallow issues and gives you the delight of flavours and of course contributes to your gut microbiome. At the rehab hospital a wonderful SALT used to put fizzy cola bottles in gauze and let me chew that i got the flavour of the sweet but no risk of swallowing it because she hung onto the gauze. This was the beginning of building up my mastication muscles. I can now manage just about any food and this morning enjoyed croissants with my three daughters for breakfast
2 months ago i couldn’t chew anything my muscles degraded/atrophied by sarcopenia. I’m happy to continue to give you advice, it all suddenly falls into place with persistance.
Thank you @ManjiB for now the dietitian doesn’t want to remove it so i will endure. Is your mum eating anything? Soup, yoghurt, i remember reading that you were giving her the odd teaspoon of water?
A small glass of water is as far as we got before the unfortunate events of her stomach lining being damaged and requiring repairs, which in turn has led to further problems, pushing her back a few more steps than she would have liked. But Mum being Mum, she soldiers on
The doctors are challenging her even more now by prescribing medications she doesn’t need or at least no diagnosis has confirmed they are treating what they think they are treating. The “one cap fits all” rule has been applied again and it’s please vacate the bed so we can meet our targets. The fact it is an unsafe discharge and you might be back within 24 hours does not matter as the case is closed and a new one will be opened !!!
I am sorry your dietician is not agreeing with your view that you can now safely swallow and do not require the unnatural extension. Hopefully you will be able to convince them soon.
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I strengthened my chew/mastication muscles with bread, toast, mashed potato steamed fish. Yoghurt is great for swallow issues and gives you the delight of flavours and of course contributes to your gut microbiome. At the rehab hospital a wonderful SALT used to put fizzy cola bottles in gauze and let me chew that i got the flavour of the sweet but no risk of swallowing it because she hung onto the gauze. This was the beginning of building up my mastication muscles. I can now manage just about any food and this morning enjoyed croissants with my three daughters for breakfast