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Steve
24th April 2015, 12:13
Any Bulbarians got any drinking tips?

I am now using McDonalds straws as they are the widest I can find. Does anyone have any creative tips?

I have tried all the different types of straw recco by my SALT but don't get on with any.

Pam S
24th April 2015, 14:15
Steve, just Google extra wide straws, there are plenty of sites that do these for, milk shakes, bubble tea etc., All the best Pam S x

pete
24th April 2015, 14:20
Any Bulbarians got any drinking tips?

I am now using McDonalds straws as they are the widest I can find. Does anyone have any creative tips?

I have tried all the different types of straw recco by my SALT but don't get on with any.

Hi Steve,

Yes me too, I found making them oval instead of round helps with the seal to the lips ,and making sure the end is towards the roof of your mouth, not just in your lips.
Hope the family are ok.

Pete

Terry
24th April 2015, 17:32
I know some people use metal straws. I use a safesip rubber top as it holds the straw in one place so that you only have to hold the glass, it also stops any spills and makes the glass have a grippy top.

One person did get frustrated as the bottom of the straw would be pushed to the bottom of the glass and as he could not use his hands, he could not drink. If you get the bottom of the straws cut at 45 degrees this should stop that happening.

Terry

Steve
24th April 2015, 17:49
That drives me mad!

The safesip thing is a great idea, will look into that.

Family are well ta Pete, Baby, 20mnth old, dog, nan and gramps all asleep at the mo, it's nice and quiet.

Terry
24th April 2015, 18:40
Hi Steve;

What drives you mad? The safesip's look expensive but they do last more than three month as long as the misses does not put a nail through them.

Steve
24th April 2015, 18:46
People jamming the straw into the bottom of the glass.

Terry
24th April 2015, 19:25
Get your wife too cut all the bottoms at 45 degrees in the whole packet, she will think you mad but it will stop your frustration.

Just don't tell her it's my idea, love Terry

Night walker
25th April 2015, 05:59
Hi

You guys are the nuts, this is such an excellent tip. We need a tip list as these golden nuggets can often get lost. Wonder if the forum admin people can come up,with something? Your both Amazing thanks
Sylv

Jock
25th April 2015, 07:36
I'm not a Bulbarian, but I use straws. My wife got me a wee baby cup from Boots for my wine yesterday. It has safety lids and all that. That's a very practical 45 degree tip Terry. Cheers.

Queenie
25th April 2015, 08:51
Hi my hubby isn't Bulbarian but found the straws from Ikea useful very wide when there not I use your tip Terry.

njm
25th April 2015, 10:30
Great idea. The MNDA publishes a MND recipe book. What about publishing a Practical Tips book?
Hi

You guys are the nuts, this is such an excellent tip. We need a tip list as these golden nuggets can often get lost. Wonder if the forum admin people can come up,with something? Your both Amazing thanks
Sylv

Claire McArthur
25th April 2015, 14:24
What a great idea, will pass this onto our information team.

Claire

Terry
28th April 2015, 11:38
Drinking thicker liquids are easier, you can get thickener on prescription and there are two different makes. They can be added to most liquids.

Hot or cold drinks can be easier too as can highly flavored and carbonated ones such as coke.

If the senses are triggered, the drinking and swallowing is normally easier.

Terry

Cath51
28th April 2015, 15:31
Mic liked his Tetley Bitter, I found that metal straws with a bend in them worked best as they didn't float back up the glass like plastic ones. I got them from eco-straws.co.uk they also supply the cleaning brushes.

Terry
28th April 2015, 16:47
Hi Cath;

A safesip cover would hold the straw and stop any spills. Just a thought, Terry

Tikitiboo?
9th June 2015, 10:06
Dear All

Info please! I now cannot suck through a straw. I have a cup with a spout. A bit like a baby cup.

Is this another step in this cruel disease?

Hugs
Anna

Dude
9th June 2015, 10:48
Hi I couldn't suck my Ensure through a straw, but can still pick glass up using 2 palms of hands. Couldn't do it with baby cup.
Where did 'Bulbarian' come from 'cos that sucks. Lol Dude

willsandco
9th June 2015, 11:00
I ordered both safesipcoverand straws only to find I cant
use a straw any more? I would imagine that Steve used the word Bulbarian for those like me and a few others who are suffering from bulbar onset mnd. I quite like it! Joycie

Dude
9th June 2015, 11:05
Joycie I too, have bulbar onset. Couldn't we be called 'Bulbies'. Dude.

Terry
9th June 2015, 11:10
Hi Anna;

You could try a hydrant bottle. I think they do require normally to be sucked a little but someone might be able to set it up so it siphons, it has valve type thing that you open by gently bit to open. I have know people that have used them but believe that normally require some suck.

More info here:-

http://forum.mndassociation.org/showthread.php?2345-Drinking-cups&highlight=hydrant

Whether you could use a small pump such as the one used for PEG feeding and set it up with an on off switch.

There are things that could be adapted and made but don't know of anything. Wider shorter straws are normally easier.

Love Terry

jasimons60
9th June 2015, 11:49
Hi, I have Upper Bul Bar MND and I was able to eat and drink normally in March 2014. I was properly diagnosed in July 2014 and started using thickener (Nutalis) and having puree food around August 2014. I started to find out that some liquids where going down the wrong way and had a few choking episodes. In December 2014 I had a feeding tube fitted (PEG) as a precautionary measure. I was still eating puree food and using drink supplements but In March 2015 I was finding it very hard to swallow without choking so I now use my PEG for all food and drink. Because this disease affects people at different rates I thought I would share my experience as I did not want to have a PEG fitted but in hind sight it was the right decision for me.

pete
9th June 2015, 11:56
Hi
Anna,

That's a new one on me !, is it because your lips don't form a tight seal, ? Or if it's because you can't suck period, maybe a syringe would work ,though it would hold less fluid, do you have a speech therapist they are normally quite good at suggesting methods that help, the smaller bore the less effort unless your drinking thicker liquids,then a larger bore is easier , if all else fails a squeezy drinks bottle from push bike days might work .i hope you solve the problem ,there will be a way it's just finding it.

Pete
X

Dude
9th June 2015, 12:18
https://www.abilitysuperstore.com/index.php/dining/drinking/straws

Dude
9th June 2015, 12:22
This looks cool Anna. Can be suspended. Good luck. Dude.https://www.activemobility.co.uk/cups-mugs-straws-c223_53_160/hydrant-p-1883.html?gclid=CjwKEAjwndqrBRC16IyeqPicp3ASJAB-vB-cFcixbH4_rokLTVKPNgTPgu8rx6XYOvHI_sTft5NqqBoCSbPw_ wcB

Terry
9th June 2015, 17:01
Thanks Dude;

The Pat Saunders one way straw looks quite good. Here is the blurb:-

These best selling straws contain a one-way valve so liquid stays in the straw even if the straw is moved from the user's lips.

Suitable for people not able to suck strongly and the straws prevent air being sucked into the user's stomach which can cause pain and discomfort.

Terry

Tikitiboo?
9th June 2015, 17:47
WOWEE!!!😀😀
I left a request at 10 ish on this wonderful Forum. Only to come back at 5 pm and see so many helpful responses.

Thank you all so much.

Hugs
Anna

Terry
9th June 2015, 17:51
It would be nice if they are helpful to you Anna.

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