First visit

[Doug Carpenter]

Hi Polly

Welcome to this marvellous community. You'll understand I'm sure when I say I'm really sorry you've found us, but I hope the Forum will be a source of information and comfort - as it has been to me.

This is a link to a brief description of ACT therapy that is at the heart of the COMMEND project.

https://soundcloud.com/commend-ucl/introducing-act?in=commend-ucl/sets/act-online-materials

I wouldn't bother too much about it now - but just to remember it's there. What has emerged from the study so far is that it seems more difficult to engage men in therapy than women. No surprise there then!

Big hug

Doug

[Wailywoo]

Hi Polly,

We experienced exactly the same overwhelming information / advice about what interventions might be necessary. The PEG was the first and the most consistently advised intervention and every time we see anyone that is what they mention, almost obsessively no matter what denomination - doctor / nurse / therapist - they are.. Hubby was diagnosed in January although we had been going to the doctor since August last year and the symptoms started at the end of the previous year - December 2017 (I ended up making the doctors appointment in the end as he wouldn’t). He has been resisting the idea of a PEG as he loves his food and now that he can have a few more calories to keep his energy up, he is enjoying food even more with puddings every day instead of once a week treat. I apparently am enjoying the puddings too and don’t seem to be putting any weight on either, probably due to having to do most things now that hubby used to do. He is slowly coming around to the fact that it may be a necessary intervention, but isn’t ready even yet. We have been told that there is around a 10 week waiting list for the procedure and he is feeling the pressure to decide. It’s not easy is it when everyone else knows what’s going on and what you will need but you are still coming to terms with the shocking diagnosis? I feel for you, Polly!

Well, thank you for being part of this wonderful forum and I hope you will find lots of useful information here to help you and your husband.

Wailywoo x

[Polly]

Wailywoo, I totally get that it is easier to fit a PEG early, before it is actually needed. It’s just that I did feel quite intimidated, especially as it wasn’t a one-to-one conversation, as there were several people in the room. They said if you have it early, it’s a day case. Later on you might be in hospital for 2 weeks. Or even have to go to a specialist hospital 50 miles away. No wonder my poor husband didn’t want to think about it! And at the moment, he’s not having problems swallowing, has a good appetite and has even put on a couple of pounds, so he can’t see the need.

We are in the process of being referred to local community therapists, and I’m hoping speaking to them individually in our own home will make it easier for him to accept what is happening.

[Sheila]

Hi Polly, I have had the same thing about the peg. The very young dietician was trying to say it was the best thing since sliced bread. I don't think people should be forced into anything. I felt intimidated too.
Take care Sheila.

[Gillette]

Hi Polly, hi Wailywoo,

I was diagnosed in November 2018 and, although I accepted the diagnosis, I was in a very dark place inside my head. I decided that I didn't want any invasive or life sustaining treatments. However, three weeks ago, I found myself on here reading about PEGs. The following day my Speech and Language Therapist came to see me. I realised I had changed my mind about having a PEG and told her so.

I am sharing this with you to show that your respective husbands may have a change of heart, especially when they have become more familiar with being a person with MND. Obviously, they may not change their minds, but 'no' today doesn't necessarily mean 'no' tomorrow.

Sending hugs to you both.

[Ellie]

Dina, I just want to thank you for sharing the above - very honest and open of you.

Love Ellie.

[Gillette]

Hi Ellie,

Thank you. I hope it will go some way to reassuring others.

[Olivia H]

Hi Polly
There is a huge amount of support and care for people on this forum. I wish you and your husband well. I completely empathise with those who feel the process just takes over their life. I didn't have a peg 7 years ago and still don't need one now. The important thing it is personal choice, knowing those things are there if, as and when someone needs and most importantly wants them. It's about feeling you are in control, and good medical professionals respect that. And there is always hope, I am nearly at 8 years now and still living life
Best wishes
Olivia

[Sheila]

Hi Olivia H,
Your post was very interesting and positive. I am so pleased you are doing well.
Best wishes
Sheila.

[shrew]

hi my Husband had a rig feeding tube in January. he currently eats and drinks normally and hasnt lost weight. I just put 50
ml of water in each morning.

[Kayleigh]

For anyone who would like to find out about feeding tubes, the following information might be useful:-

MNDA Factsheet 7B Tube Feeding:-

http://https://dbsy278t81889.cloudfront.net/app/uploads/2019/03/13120457/07B-Tube-feeding.pdf

'My tube' website (information and videos):-

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

Best wishes
Kayleigh