Words of encouragement

[Rubyray]

Hi, my mam has bulbar onset and this week she’s been told she should be considering a feeding tube which she is reluctant to have she’s only just agreed to careers morning and night to help with personal care she can’t drink without using a teaspoon her nurse has also said her breathing is starting to be effected as she’s not sleeping so has been being referred to the ventilation team you lovely lot have always been great with advice, she’s seems scared and I don’t know what to say.

[TinyDancer]

Hi Rubyray,
sorry about your mum. My mum also has bulbar onset but has declined the feeding tube. However, so many seem to find relief when a PEG has been fitted because it takes the pressure off eating and reduces fear of aspiration. Your mum may feel everything is coming at once. It must be so overwhelming for both her and you. It sounds like all the wheels can be in motion to help her keep the best quality of life. Although scary, I hope she can move through to a more stable stage of the disease. Thinking of you both x

[matthew55]

I have a peg and I forget I have it. I use a catheter holder that tucks it away neatly and doesn't damage it. I get peg food free which is great. Oh and I am going to a special hospital to get Non invasive ventilation which means wearing a mask to sleep in. The truth is often less scary than fiction. 😁x

[denise]

Hi rubyray
my husband was dead against having a feeding tube fitted. He really didn't like the idea at all. He didn't like the idea of the hospital, the tube sticking out of his stomach or the whole idea of being fed. He can still eat but the other day, for the first time, I fed him through the tube. I was worried he wasn't eating enough. This was so easy. It hasn't been a problem. He's not bothered by it. At least i know if there is a problem with him not wanting to eat I can get something into him even if it's just water, a liquid feed or a liquidised meal. Most people on here have the tube fitted and find the food, that's free in UK, is just so convenient. I would recommend having it done.
Denise xx

[matthew55]

If Covoid never happened I would be visiting new MNDers to show them my PEG in action. 😁x

[denise]

What a thought! Like belly dancing 😄

[Ellie]

Rubyray It's absolutely normal that your mum is scared - there are big changes happening in her basic functions, that would be frightening for anyone.

If she has information regarding what having these interventions might mean to her quality of life, she might find making a decision a bit easier. These sites are good to get info on what is involved in both having a feeding tube and non-invasive ventilation (NIV)

http://mytube.mymnd.org.uk/

http://mybreathing.mymnd.org.uk/

She might find that reading and watching videos about real people with MND makes these topics more relevant for her. The decision is hers to make, as you say.

Love Ellie.

[Rubyray]

Thankyou, I will tell Mam what everyone has said so she knows she’s not alone. Ellie I will see if she will watch the videos there a great idea. 🙂

[Rubyray]

Matthew you alway make me smile 😀

[Lynne K]

Rubray, as Ellie said, it’s perfectly normal for your mum to be scared. I hope that she agrees to watch the videos that Ellie put a link to and that’s she then feel sad better about have these. Lynne

[nunhead_man]

Reading this thread has prompted a question from me about this area because I'm wondering about asking for a tube as my arms decay.

I'm just wondering whether I ought to wait until I have some difficulty swallowing or whether I can justify asking for one just because I can no longer feed myself because my hands don't work?

[matthew55]

Personal choice but why the heck not get a tube? 👍😁x

[Ellie]

I'm just wondering whether I ought to wait until I have some difficulty swallowing or whether I can justify asking for one just because I can no longer feed myself because my hands don't work?

I was offered a tube on the premise Andy. At the time I thought my Neuro was bonkers as my swallow was still good, but I was (habitually) thin so the worry was it wouldn't have taken much for me to lose weight if food prep and feeding myself became onerous.

In hindsight, the Neuro was 100% correct.

Love Ellie.

[David R]

I felt exactly the same about the tube fitting but couldn’t recommend it more now I have one and it definitly needs to be done whilst your still fit enough to recover from the procedure, you will have to have it if swallowing is deteriorating, I think the professionals should be being more honest and pushing it rather than just keep saying we suggest it but its your choice! which it is but it is so important, I've had mine a year now and am sure I'd be gone by now had I not of had it fitted. I heard of someone with Bulbar local to me who totally refused it and then when they finally had to have it fitted as an emergency it was basically too late and they didn’t recover or survive. I know this all sounds a bit blunt but just trying to get the message over.

[denise]

I agree with David. Stephen had his fitted before it was required. He can still eat with his mouth but due to his hands being almost useless feeding himself has become difficult. At least now there is the option. Also free food and the calorie counting is so much easier. I'd recommend getting it done.