Husband in process of diagnosis

[Gilamon]

Hi My husband was diagnosed with semantic dementia in Dec 2019. He has been struggling with his speech and swallowing too. We're now advised that he probably also has ALS. I'm assuming that would be bulbar onset ALS as opposed to Progressive Bulbar Palsy. Although I'm not sure if they are the same. He has fasciculations on his tongue and arms and a little on his leg. He's no longer able to manipulate his tongue and speech is very difficult. The speech therapist has given us great support.
We've seen a neurologist and are undergoing various tests to discount any other conditions.
He is unable to eat any solids - all food is like a thin soup and he needs thickener in his drink.
We've agreed to a feeding tube but I am concerned that swallowing is such a difficulty, it may not be an easy operation.
Any advice on feeding tubes or anything else will be gratefully received!
Many thanks Gill

[Ellie]

A warm welcome to the Forum, Gill and sorry about your husband's diagnoses.

Semantic Dementia is a variant of FTD (FrontoTemporal Dementia) which can be associated with, or go hand-in-hand with ALS.

If ALS is confirmed, it does sound like bulbar onset but assume nothing! How far is he into testing - has he had an EMG test yet?

Regarding the feeding tube procedure: the fact that his swallow is poor won't impact on the actual placing of the tube - the reason why we with MND need feeding tubes is because our swallow fails, so it's definitely not a complicating issue unlike respiratory function. Although the tube is passed down the throat during the PEG procedre, he'll be lightly sedated and doesn't have to actively swallow the tube. I don't know how much info you were given about what's involved, but here's aan info sheet or feel free to ask questions on any aspect of it. There are threads on it too - put Feeding Tube in the search box.

https://www.mndassociation.org/app/uploads/2019/03/07B-Tube-feeding.pdf

Has his Speech and Language Therapist been involved in the provision of communication devices/apps or does the SD complicate that?


Take care.

Love Ellie.

[Gilamon]

Thanks Ellie
One of my concerns is that he had an endoscopy last year and doesn't want the same experience with the feeding tube. However he does know the reasons for having it fitted and can see that it would be beneficial. He has refused an NG tube but is more willing to accept a PEG or RIG. I have concerns about his stay in hospital as communication will be a problem, both with speech and understanding... especially if I'm not able to be there if covid 19 restrictions still apply when it's due to be done.
We have a brilliant rare dementia team who have supported us hugely. The dietician has explained the various feeding tube processes but no one can really address the worries Dave has. The speech therapist has helped with lots of ideas, a communication book, a text- speech app as well as strategies for us all to apply. The dementia means that he is losing his vocabulary and so communication will become increasingly difficult.

So far he hasn't had the EMG test or an MRI due to the virus... he's had blood tests and quite a thorough physical examination.
Thanks so much for the links xx

[Gilamon]

I forgot to say that previously no one had explained that swallowing is not an issue with the fitting! Thank you

[Ellie]

I understand Dave's concerns about swallowing the endoscope - I had one a few months after my initial PEG procedure and opted for no sedation, so gagged for a few seconds, unlike my actual procedure when I was sedated and was blissfully unaware of anything going on It must be much more unsettling for a person with dementia Does he verbalise his worries?

I wonder if seeing a video of the procedure would be any use to him or perhaps it'd confuse him more? I mean from the point of view that it clearly shows a person asleep, and has no reaction as the scope is passed down the throat. Of course the RIG procedure doesn't involve a scope but being conscious throughout the procedure I suspect causes anxiety for even the most rational person.

And I get your reticence about the hospital stay. I'd get really unsettled if I were in hospital and didn't have instant access to my PC to communicate - I'd feel vulnerable and anxious so, again, it must be 10x worse for Dave. I bring my own 'instructions' any time I go for respite but I get that it's different for Dave. Hopefully between his dementia care team and the PALS in the hospital, he can have the best set-up possible and be in and out as quickly as possible.

I hope you have good support too Gill and can now see your friends again - don't forget to look after yourself!

Love Ellie.

[Lynne K]

Hi Gill, I’m sorry to hear about Dave’s struggles. Ellie has given you lots of advice so the only thing that I’m going to add is for you to look after yourself and find time for yourself in your busy schedule. I hope that you have friends and family to support you. Love Lynne

[Gilamon]

Thank you Ellie and Lynne. That's so comforting to hear of your different experiences with the endoscopy. I had one year's ago with no sedation and can remember that it was very difficult. I didn't say anything to Dave about that and he seemed ok when he came from the procedure last year, so during this current discussion I was surprised how strongly he felt. He does find verbalising very difficult and needs others to be patient.
Thank you for thinking of me too. I have a few good people around me and we're doing ok. I know further down the road things will get difficult but we're taking each day at a time and he is happy
Thank you for being here xx

[Gilamon]

'I had one year's ago' should be... Years ago, I had one... sorry

[Hayls]

I had my tube fitted December 19 I couldn’t tolerate the endoscopy in my throat as my emotional lability was out of control so they did a RIG via X-ray, you get the specialist to explain all options and choose what you think is best for him, you know him better than anyone xxx

[Gilamon]

Thanks so much Hayls
That's really helpful xx

[matthew55]

Hi everyone, I have signed the forms and am due my PEG very soon, I'm getting a breather too and at the moment I can breathe and swallow. I'm not worried because I have already had a camera down my throat at the ENT. I'm not even worried about my week as an in patient as maybe I'll finally get Covoid! ����

[Barry52]

Hi Matthew,

Good luck with the operation and don’t give up the fight.

Barry

[Gilamon]

Wishing you all the best Matthew xx

[matthew55]

Oh I'm still fighting but I do enjoy the feeling of freedom from the fear of anything! ��

[Hayls]

Matthew, I’ve told my family that if I get Covid I don’t want a ventilator and I have a DNR in place, I’d rather day that way instead of being starved or be dehydrated to death, that’s what they did to my dad and said they promise to keep him pain free and asleep, they didn’t, that broke my heart, utterly soul destroying, I swear that caused my MND to activate, I’m thinking if it’s my time then so be it ( strong arm emoji)