Choking and forward planning

[Lynne K]

Hi all, any advice or comments will be gratefully received on the following:

I had my worst ever choking event today when drinking tea. It was very scary. Thankfully Steve was here with me. He suggested that in future I take little sips instead of big gulps.


I'm still eating ok dependent on my dodgy fingers so the inevitable slowness and often cold food.

Is it the time to forward plan and explore having a feeding tube before it becomes necessary? Or, should I wait?

Thanks, Lynne xx

[matthew55]

Feeding tube all day long. I have given up trying to eat and am close to not trying to drink. Get the tube BEFORE you need it. x

[Ellie]

Sorry you had such a scary experience Lynne.

Steve ... suggested that in future I take little sips instead of big gulps.

For once he's correct 🤣🤣 You may need to focus on what you're doing now every time you drink - tuck your chin into your chin when swallowing liquids and drink like the Queen, not like a builder 😁

You should have a swallow assessment by your SLT, but I don't know if your Clinic is back doing these? The SLT can give you tips on drinking & eating as well as telling you if your swallow is affected, that will allow you make an informed decision on a feeding tube.

As to the when to get a tube, well there is no definitive answer - many of us get it 'too early', others get it 'too late' and have a much tougher and longer recovery.

The usual advice is to do it sooner rather than later and have an easier recovery - the fitter and healthier we are for the procedure, the better. But of course... who on earth feels they need a feeding tube when they're relatively fit and healthy!!!

Matthew is a good advertisement for early intervention but we're all different and in different situations. Your progression seems slow and steady and you've spinal (limb) onset, not bulbar, important factors to consider (with your Neuro & SLT)

In the meantime, take good care.

Love Ellie.

[Barry52]

Hi Lynne,

choking is a scary experience as you have witnessed but you can learn to minimise and manage it. I choke often and it is apparent that liquid is worse than solids for me. I have tried several brands of thickeners which help but I always find the drink is affected by the flavour even though the manufacturers say tasteless. Drinking through a straw helps if you have enough suck.

when we choke our breathing is compromised and we panic which makes things worse. Try to take a breath through your nose. I know it’s not easy but it will come with practice.

love Barry

[matthew55]

You should have seen the nurses at my covoid test. I was choking and they were convinced I was dying! 😊

[Lynne K]

Thank you Mathew, Ellie and Barry.

My Speech Therapy nurse about 8 months ago and gave me thickeners to try. I couldn’t get on with them. I bawked.

I'll email her with my query,

Love Lynne xx

[Ellie]

I didn't like those thickners either - much prefer sipping my coffee through a straw

[matthew55]

I use a thickening but just one scoop and find it better in hot drinks. I use a beaker and cold drinks can get congealed and stuff up my spout 😊😂

[David R]

Hi Lynne,

Yes choking is scary and thats where my MND all started, I hated the thicker but in the end had to give in to it because I love a cup of tea but it still takes me about 15 minutes to drink one cup in very small sips. I find concentrating very hard on drinking the best way to handle it, don’t be looking at a laptop or TV or trying to communicate with someone at the same time. I almost shut down in my own space to manage a drink. I would say definitely have a Tube fitted so you're ready, I can’t eat at all now and only 1 year ago was still eating quite normally, as they say every one progresses differently. I had my RIG fitted just before lockdown, so glad I did as it would have been very difficult to get it during that period, we could easily have another escalation of Covid so I’d book it in asap

Regards David R

[DeeH]

Hi Lynne,

Husband has only been diagnosed 4 weeks, affecting his hands and balance. OT suggested a travel mug, got a tall silver one at Home Bargains for 1.50. It keeps the tea hot and because the hole is small in the lid (which screws on, so I need to do it), controls the rate of liquid. It may help, he is a fan now so I bought another for cold drinks. Mugs and cups are a little short and he has to dip his head to drink out of them.

Donna

[Lynne K]

For David and Dee:

Thanks David, I’m grateful for all comments and suggestions.

Dee, we already have the kind of cups/mugs that you were referring to. These are from when we regularly hill walked and did camping. I used to take the tops off because they kept the tea boiling hot and would burn my mouth. I wasn’t having much milk then and have non now, so there’s nothing in the tea to cool it down. But I could cool it down first with the top off, then put the top on to keep it just right. I’ll speak with my husband about this. Many thanks, Lynne x

[jd58]

I chocked on Tea and water but only when im tired or somethings makes me laugh. So everyone knows now in my house so they respect me when im drinking.

[Lynne K]

Hi all. I ought to have posted this after my last clinic appointment 2nd September I think that it was. My Salford Neurologist said that I’m not at the stage for a feeding tube yet. I put it to her that I’d read about other MND peoples experiences about the timing of getting a feeding tube is sooner rather than later because of the better recovery. But she said that they do it at the time of it being necessary and can do it even when breathing is compromised. She’s the gate keeper so I’m in her hands. I haven’t had any choking as bad as what I described earlier since that time. But I’ve had lots of near misses.

I took all of the advice suggested. Thanks again folks, love Lynne x

[Ellie]

Are you happy with the Neuro's stance Lynne? You might see her as a Gatekeeper, but she doesn't sit in an Ivory Tower.

I’ve had lots of near misses.

You know how your swallow is and one of those "near misses" may end up causing you difficulty. Would you ask for a swallow assessment - then a SLT professional can give you an expert opinion.

I hope you're not stressed by her approach to feeding tubes.

Love Ellie.

[denise]

Hi everyone
Stephen has just had a coughing episode. It's not the first they seem to be getting more frequent. One night he was in bed with his breathing mask on and he started. He frightened the life out of our son. It starts with a little cough and then he seems to take in a huge wheezy breath. He thumps his chest and seems to be trying to take more air in. I never know what to do. He hasn't eaten or had a drink so I don't think it's a choking episode. I just don't know how to react. Do I hit his back or let it take it's course. It doesn't last long but it's quite scary. Any advice would be helpful.
Denise xxx