A monkey on his back: An MND Milestone

Our visit to Westminster was exciting and you will read in future blog posts about further adventures to come, but closer to home, we are facing some changes.

Those of you who meet me on facebook will know that we recently attended an appointment at the Royal Brompton Hospital. Here we meet members of the team who monitor his breathing closely. At each visit, they check Roch’s blood gases to see if the oxygen level in his blood is okay and they check his breathing. The results last Tuesday held no surprises for us. His FVC (Forced Vital
Capacity) is lower now and measured at around 58%. Many factors can affect a reading and if taken again now or tomorrow – the reading could be higher or lower. But it gives them an idea of the rate at which it is decreasing. Oxygen levels are still good.

They have advised that now is the time to begin using the nippy (non-invasive ventilator) at night. The idea is to improve quality of life during the day, as Roch is feeling more fatigued in the daytime now. We haven’t started this yet and yes there is a reluctance to make this change – it’s a bit noisy and having a mask on your face all night isn’t going to be too conducive to sleep, but they say he’ll get used to it. I hope I can sleep through it. We’ll see. I’ll let you know.

We have also come to another MND milestone – the dreaded PEG (Percutaneous Endoscopic gastrostomy). I’ve mentioned it in these pages before. We don’t have a date yet, but sometime in the New Year, Roch will be going into the Royal Brompton to have a PEG fitted. It’s important that the procedure is carried out whilst he is still relatively fit. They don’t like to carry out the procedure in people with a FVC of less than 50%.

Roch isn’t experiencing bulbar symptoms (problems with swallowing etc.) but as his breathing is compromised and he is losing strength in his arms, it is becoming more difficult for him to eat. Lifting the food to his mouth is tiring for him – he doesn’t really like being fed by me or anyone else, although occasionally I help him to finish a meal. His appetite has diminished somewhat and his weight fluctuates. He weighed 12st 7lbs when he was diagnosed – now he weighs 10st 5lbs. It’s been a gradual decline, and some of it is muscle wasting but I’m sure other carers will sympathise when I say it’s a constant worry to me – am I feeding him enough? Is he having enough nutrition?

So the idea of the PEG is to introduce nutrition in some other way than through the mouth. This usually involves passing liquid nutrition, which has been specially formulated, through a tube into the stomach. This tube is inserted directly into the stomach through the abdomen.

Tube feeding doesn’t necessarily eliminate oral feeding. Roch will probably go on eating his favourite foods by mouth. He may not even need to use the tube for some time. He will have to stay in hospital for a few days, they told us – so that they can monitor him. It’s because they are extra careful and that’s got to be a good thing.

I’ve been reading up on it on the MND Association website and they say swimming is possible after a PEG is inserted. This is great, as Roch hasn’t been able to swim for about three years now. (Groan – I think I’ve made that joke before but I felt the need to inject some humour).

Here is a helpful diagram, which comes from MND Association Information Sheet 11, about PEG feeding. If you would like to read more about gastrostomy and MND, follow the link below: