Hydration and adapting

6

Think about your daily routine. So many things you do. I rely on the carers, family and friends. With MND my needs evolve, and this means we have to make changes together. Here is a current example related to hydration.

Andrew’s water bottle

I can no longer suck water when the bottle is attached to the back of the wheelchair, and when it is attached to the bedrail. This means we need to do things differently.

Daytime –
Either put the bottle on the table by the TV, or
Hook it on the headrest arm
When the bottle is half full, you can hang it on the bar where the computer is attached.

Night –
Hang the bottle on the back of a dining room chair, and put the chair near my pillow.

 

I drink by biting the mouthpiece and sucking the water. To make this easy, please can you –

Ensure that the bottom of the tube is about 1cm from the bottom of the bottle.

Ensure that you put the mouthpiece to my teeth on the left hand side of my mouth. If it goes further in my mouth, then I can choke

Put the tube to my teeth, with the long, flat side of the mouthpiece for me to bite on

Make sure that the tube is clipped to my shirt or sheet, so that it doesn’t push into my throat or so that I don’t have to pull on it

Watch out for the AIR LOCK in the drinking tube. This is like a long bubble, and it makes it harder for me to suck the water. If you see me struggling, pull the tube out and put it back in. Thank you.

I enjoy the challenge of finding solutions to make daily activity easier and faster. I have made a change related to the night routine, which is already making a difference.

Andrew Knowlman

I am a 50-year old father of two children, married to Jane. I live in Hertfordshire, UK. I was diagnosed with Amyotrophic Lateral Sclerosis in April 2015.

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