View Full Version : Is it too late?

11th March 2015, 04:18
Joe was diagnosed with ALS in Nov '14 and things have progressed very quickly. We had a trip to Manchester just over a week ago and it really took it out of Joe. He slept for days on end after we returned home. The district nurse called last Friday and said she had never witnessed such a rapid decline in an MND patient!! I asked about peg feeding as Joe occasionally chokes when eating, she said she doesn't even think that's an option for Joe! You can imagine my dismay! Then when I thought able things logically I remembered the man in the bed next to Joe in the Royal...aged 78, with breathing problems. He had peg fitted last month so how can it not happen for Joe when his breathing is not yet a major problem? An over cautious nurse perhaps? All advice greatly appreciated.

11th March 2015, 07:35
Hi Ciara,

I would suggest you ask your GP or somebody medically qualified, which i'm not..but here's a pennies worth,

Iron deficiency is associated with swallowing problems,..and fatigue,..both you've mentioned,
It's unlikely to do any harm, to boost his uptake,..give him more energy,..maybe avoid pipework,

The most ocurring essential nutrient is iron whose major function is to combine with protein and copper in
making hemoglobin and bind oxygen in red blood cells for the delivery of oxygen to body tissues.
It is part of hemoglobin, the oxygen-carrying component of the blood. When deficient we tire easily, partly
because our bodies are starved for oxygen. It is part of myoglobin, which helps muscle cells store oxygen.
Without enough it, ATP (the fuel the body runs on) cannot be properly synthesized.

Iron is called the "energy giver". It attracts oxygen and builds blood cells. Along with manganese and copper it
is necessary for healthy blood chemistry and is essential for recovery from illness.
Iron stored in the blood, bone marrow, liver, and spleen, with trace amounts in every organ.
Iron is one of the most common deficiencies in men and women.
Although, women require more iron than men (because of there menstrual cycle).
Without sufficient iron the body cannot manufacture enough hemoglobin, (the red cell protean that transports
oxygen in blood ) Iron helps the body rid itself of carbon dioxide and keeps liver tissue soft.

It must be soluble type,..and optimum dose is believed to start at 18 milligrams per day

Good luck

11th March 2015, 09:25
hi ciara,
you need to speak to his GP asap and get a referral to a gastroenterologist, they will give you the right info either way. there are other ways of helping your joe eat for now if you contact your SALT they should also help.
i hope things can improve for you both,

11th March 2015, 09:41
Hi Ciara

The link below takes you to the MNDA Information Sheet that gives details of Tube Feeding. It might be worth you reading through this before you speak to your GP. Poor breathing does not stop a Feeding Tube from being fitted, it just means a different procedure and type of tube. Good luck.


11th March 2015, 09:41
Mum was considered unsuitable for a PEG but we didn't push for reasons as she didn't want one anyway. She did however have an NG tube (fed through the nostril) for several months to the end so there are options.

11th March 2015, 10:07
The leading joint top GP in my Palliative Care team told me Friday that there was no evidence that PEGs bought more time. I found that most surprising as I assumed that 'feeding' would mean otherwise. Breathing machines are found to prolong life a tad.

Thank you to Ray for that Iron info. It's usefulness extends beyond MND.

11th March 2015, 11:26
Hi Ciara, I think good advice from Mik get on to your GP asap, also have you thought about ringing mnda connect for advice also, they may be able to steer you in the right direction. I am so sorry Joe is showing such rapid deterioration you must both be feeling lost. Take care and here's a hug for you both

11th March 2015, 11:29
Thank you all for your advice. I'll get on to it now. Very little sleep last night, boys are at school and Joe is fast asleep �� breakfast and I'll be ready for another round!

11th March 2015, 11:44
Hi Ciara:

I would not think that a feeding tube is out of the question even if his general health is not great. Breathing is the main problem and that can be over come by have a different opp to a PEG called a RIG or a PIG. They are all quite small opps, normally less than 30 minutes.

Take the advice of the others and see his GP and any specialist that he has. The info sheet should give you an insight to the different options.


11th March 2015, 13:21
Thanks Terry

11th March 2015, 17:29
Hello ciara
I would take ray's advice first as you can start it now an costs pence per day
I have found most Dr's pretty much isles for mnd.
Good luck

11th March 2015, 21:13
Hi Ciara,

My husband was unable to have a PEG or RiG fitted due to previous abdominal surgery however when swallowing became unsafe he was fitted with a nasogastric tube. That was last July and since then everything goes through the tube, fluids, feeds and meds. His weight has remained constant and his face has filled back out a bit. The tube needs to be changed every three months ( initially they had said monthly however NG nurse had a different type of tube which lasts longer) and he doesn't like the change over however over very quickly and the NG nurse comes out to the house to do it so no hospital visit required. It is usually described as " short term " however I think as with most things and MND there are always exceptions. Def speak to your GP who will get the ball rolling.

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