I wondered if anyone had experience of severe dysphagia as a result of a brain stem stroke and if they could share their recovery path? My husband (60) had his stroke about 9 weeks ago, he now has a feeding peg and will be discharged back to community therapy in the next couple of weeks. The hospital SLT team have given him some exercises and pretty much left him to it advising that progress is typically slow and that most of the work will need to come from him to try and improve his swallow. I would be interested to hear of anyone who had a similar stroke, swallowing is the main issue affected by brain stem strokes and the SLT team haven’t really explained what the path to recovery might look like or what we can expect by way of timescales. Once he is home we need some hope to keep him motivated and upbeat so if anyone has had this experience I would love to hear it. We are going to independently supplement his NHS therapy and I would also be interested to hear if anyone has done this and if the results were different/quicker/if it made any difference.
Hi @June22
Welcome to the community, I’m sorry to hear about your husbands stroke and the difficulties he’s having with dysphagia.
Have you seen the information we have on our website about dysphagia, this may have some helpful information for you.
I’m sure there will be others along to also offer some advice based on their experiences.
Wishing your husband well on his recovery journey and if you need anything whilst you’re using the Online Community please don’t hesitate to tag me using the @ symbol and my username.
Anna
@June22 hi & welcome to the community. Sorry to hear of your husbands stroke.
I don’t have any experience of dysphagia but recovery for anything after a stroke is different foe everyone. No one can really give you a time frame as it is different for everyone. A lot depends on how much work we as individuals put in. Stroke recovery really does require lots of determination and patience. In time there’s every reason to believe there will be improvements.
Wishing you both all the best.
Ann
Hello @June22 - Welcome to the community.
I am a carer for my Mum and she too was discharged home with a PEG tube following a stroke in circumstances similar to your husbands. I am not clear from your message on how well your husband understands his condition and how well he able to communicate and do things. Mum was totally dependent on others and her communication was extremely poor (small hand gestures at best). The SaLT was not at all helpful and did pretty much what they have done for your husband i.e. leave us to sort it out.
The good news is as long as you and your husband work on it, and follow what the SaLT has suggested, there is a good possibility to improve. As Ann, @Mrs5K says, stroke recovery pretty much depends on how much work individuals put in, or are able to put in.
My Mum is swallowing safely now but she is still being fed via a PEG tube because the SaLT and Community team have not signed her off to be able to swallow safely. This is a long story and I have posted more information on this forum about Mum’s story and her PEG tube trials and tribulations which you can read for yourself if you so wish.
As you mentioned the SaLT has effectively left you and your husband to get on with it and that is what happened with Mum. Whenever we tried to get them (SaLT) back in to get Mum signed off it was difficult as Mum was never able to demonstrate to the SaLT’s satisfaction she can swallow safely. We know she can, we see her doing it all the time - her mouth produces saliva and other fluids and in the main she swallows them with no problems and occasionally some dribbles out.
Your husband can try taking spoonfuls of water to build up the swallowing reflexes etc and water is safe (I expect your SaLT has said something similar).
In summary, over time, Mum is able to swallow safely, no problems whatsoever, but something in her brain is causing her to refuse food or drink when offered. We have a theory on that, again documented but I suspect things will be different with your husband if he is able to communicate with you.
Wishing you and your husband all the best.
Namaste|
Additional reading on PEG - type in “PEG TUBE” in search bar (top right corner) and several previous posts will come up as shown below.
thanks very much for these replies, very useful. I will post update as and when it happens.
I had a total of four brain stem strokes…the most recent was just over a year ago. Initially I couldn’t talk or walk, but I can now although my speech isn’t good . I got pneumonia in hospital through inhaling food and wasn’t expected to live. I lost three Stones,gave up drinking alcohol and I’ve exercised every day and take lots of walks. You get a lot back early on but it takes longer later… Im 64 and can’t drive, I can cycle and I had to retire early… I live on a boat and take a lot of meds…I spent 12 weeks in hospital in total.
hi Jeff thanks for your reply. Did you get an explanation as to why the brain stem stroked occurred? I live in fear of it happening again but we have been told not to fixate on it (easier said than done), and that it was just one of those random things that could happen to anyone. Its so good you can now walk and talk thats wonderful. Was your swallow also affected and can you now eat and drink? Take care, cycling by the river to your boat sounds like a nice relaxing part of your rehabilitation and I wish you well. J