Jacqui Griffiths – Dietitian MND TeamLucy Hyne- Speech & Language

Therapist MND Team

Overview

• Mr X- 57 year old • PMH: COPD ,alcohol/drug abuse, addicted to

codeine, depression, head injury• Social History: Enjoys betting on the horses,

lives with unstable partner (alcohol abuse, physically aggressive at times with him, hard of hearing) 14yr old daughter

FEB 09 -Elective Hospital admission

Investigation of a 6 month history of progressive dysarthria, occasional swallowing difficulties, weight loss and unsteady gait.

During admission • NG placed (1 stone weight loss over 5 months. Feb 09 -70kg)

• Diagnosed with MND

• SLT Assessment: he reported difficulty with swallowing tablets, taking 10 min to swallow 2 tablets , advised runny honey and soft diet,. Non-compliant in hospital

MND CLINIC MARCH 09

MND CLINIC MARCH 09

Sense of unbearableness

It can be protective to deny at times

“Why me?” ‘' What have I done to deserve this?”

DENIAL Hopelessness

MND being an awful / very difficult condition to deal with disbelief

As a coping mechanism

Terrified out of control

CNS VISIT JUNE 09

DEPRESSION

CNS VISIT JUNE 09

SADNESS

FEB 10---MAY 11

THINKING ABOUT IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

From history what do think is affecting his ability to make a decision following eating and drinking recommendations and taking so long in accepting Gastrostomy tube?

What would you do?

4 1/2 years post PEG

• Enjoys betting on the horses• Continued to eat and drink at risk until Nov 14 (multiple

chest infections and hospital admissions)• Problems with bowels on-going, C.diff, hospital

admissions • Weight 82 Kg• Has a grandchild • Relationship still unstable• Documented that he would wish to be resuscitated in

the event of cardiac or respiratory life.

DECISION MAKING

•Current Practice

•ProGas study

“I was diagnosed with MND (lower motor) in Nov 2012 after 18 months since onset of symptoms and tests. I made a decision to have a PEG fit because I knew my breathing would be compromised at some stage. I had the small op in June 2013 and while my respiratory muscles

were getting weaker I felt if this had been delayed I would have missed my opportunity. I say this because I was using the Nippy machine now and again (mainly on a morning when I suffered

from headaches due to my breathing and through the day due to fatigue). I THINK MAKING THAT DECISION WAS THE BEST EVER DECISION I HAVE EVER MADE because by October 2013 I was on

the Nippy 24/7. If I had delayed the op then it would have been too late. I was very lucky to have gone until now before needing to use my PEG. Up until recently I was struggling with getting

food down and weight was dropping off me. While it has been very hard coming off food (and I loved my grub!), I have started on feeds through PEG and I am putting on weight, am getting all

the nutrients/vitamins I need and I save my energy from struggling to eat and it is less of a burden on my family who would normally have to stand for hours feeding me. I would highly

recommend to anyone who is thinking about whether to or not go ahead to have it done before it is too late. IT’S A NO BRAINER!”