Finding comfort

[Sheila]

Good afternoon kayleigh and everyone on here!

I am going to see what the specialist says and recommends in May. Like you said Kayleigh, it's all about research at the moment. By any chance, were you ever asked about having a peg fitted?

Yeah! Feeling pretty shattered today. Had a guy come round to fix some handles up this morning. Should be a good help.

Sheila x

[Ellie]

Hi Sheila,

Two important things about having a feeding tube fitted/PEG procedure:

It's entirely your choice and, if you decide to get one, have the procedure *before* you need it, as in before you start struggling to swallow or lose weight and/or your breathing weakens.

The procedure itself is straightforward but recovery is quicker and easier the healthier and fitter you are.

When it was suggested I get a feeding tube, I thought it was bonkers and too early, but it turned out not to be, and I was glad I had it done as it enabled me to take extra fluids and calories easily, without a family member having to worry about me.

If one has swallowing difficulties, having the tube removes the stress of having to cope with food or liquids going down "the wrong way", which not only is distressing for both the person and the family member/carer to witness, but can lead to aspiration pneumonia.

You don't have to use it just because you have one, apart from put some water through it daily - it's an insurance policy, there for if and when you need it.

Please feel free to ask us any questions between now and May, so you have the knowledge to question the SLT / Dietitian at the appointment!

Love Ellie.

[Kayleigh]

Hi Sheila,

The subject of feeding tubes hasn't been discussed with me yet. I have got a good appetite now and am managing to eat and drink enough to maintain my target weight. However, I am mindful that if my ability to swallow gets worse, it might become more difficult to get all the calories and nutrition I need. Your post has been a very helpful prompt for me to learn about feeding tubes, just in case I am offered one in future.

It's good to hear that you are getting some handles fitted in your home - I hope your OT is being supportive, by supplying any equipment you need to make your life as safe and as comfortable as possible.

I hope you are getting on ok with the nutrition drinks and that you are getting more of your appetite back. You are a lovely lady Sheila, and I worry about you not eating enough. I know from experience that its not always easy, but please try to a little eat more each day, if you can xx

I'm so glad that the stormy weather has subsided! I went out with this morning with Eliza, to give her some exercise (Eliza is my electric wheelchair) and we popped into Sainsburys to buy a cheeky chocolate mousse or two I have noticed that there are Easter eggs in the shops already. With Springtime approaching, hopefully the flowers will soon be blooming in my garden and the warmer weather is on its way!

I hope you are having a relaxing afternoon,

Kayleigh x

[Ellie]

Hi Kayleigh,

I know you don't need a feeding tube now or likely not for a while, but if you get a sixth sense that one may help you but none of the healthcare professionals have mentioned it, you could initiate that conversation, which I'm sure you know - teaching Granny to suck eggs!

Sometimes the changes are so subtle, only we know they exist.

As I said, it's in the future or you may never need one, but like lots of things, don't necessarily wait to be asked.

Love Ellie.

[Kayleigh]

Hi Ellie,

Many thanks for your very useful and helpful advice about feeding tubes/PEGs.

Love,
Kayleigh x

P.S who are you calling a Granny?? LOL. As far as I am aware were all 'Spring Chickens' on this forum! Joking aside, it's very useful to know that 'sooner rather than later' is advisable, if going for the feeding tube option - thank you for always being so kind and thoughtful with your advice!

PPS. In my experience, healthcare professionals are often re-active rather than proactive with their support and advice. Thank goodness for the information on the MNDA website, and many thanks to you, and everyone else who contributes to the forum, for kindly posting such useful and helpful advice xx

[Sheila]

Hi kayleigh and Ellie! Thank you for all your advice and information. I think having a speech therapist and dietitian both coming out on the same day was a bit too much really. Too much to take in for my brain lol! I suffer badly from anxiety and when she started going on about pegs etc, I was lost and shattered by it all. I am trying to keep my weight up by eating more, but I think I have alot of nervous energy, I have always been a big worrier which burns down my weight unfortunately.
I have seen lots of Easter eggs in the shops, I saw a marmite one the other day!!! Don't fancy that flavour lol. Did you both flip any pancakes today?

Best wishes to you both and speak soon.

Sheila x

[Ellie]

You poor thing Sheila, that must have been overwhelming for you. It is such a lot of information to take in and much of it wouldn't have made sense.

Have you been put in contact with your local hospice yet? They have Counsellors available if you wanted to chat, which might be of help to you.

I'm sorry you're an anxious person, that can't be easy - as I often say, MND is a hungry disease, so keep an eye on your weight (don't know about Marmite chocolate though )

No pancakes for me, that texture is beyond me now. I can eat chocolate though

Take care.

Love Ellie.

[Kayleigh]

Hi Sheila and Ellie,

I'm not surprised that your anxiety levels were raised Sheila - you were given a lot of information to process in one day plus they were both people you hadn't met before, coming into your home - it would have been better if they had both been gentle introductory meetings. The subject of PEGs would have stressed me out as well, if it had been broached with me so soon after my diagnosis!

Marmite Easter Eggs - I like Marmite and I like chocolate, but putting them together sounds like a bit of a crazy combination to me.... and when I looked at the list of ingredients, I found that they also include garlic powder (even more random!). On the Asda website it says that Marmite Easter Eggs are 'not available' - have they totally sold out? - a lot of children might think 'what the heck?!!!', when they bite into one of their eggs from the Easter Bunny this year!

I haven't flipped any pancakes today, but I have been very well looked after by my hubby who made them for me. As well as the traditional lemon & sugar, I also like them with mashed banana & cream.

I have been thoroughly spoilt by my hubby today - he also made me a stir fry with noodles, sauce and vegetables. Many thanks Ellie, for your great 'noodle stir fry' suggestion (on the 'PEG feed advice' thread, started by Sarah).

Love and best wishes,
Kayleigh x

[Sheila]

Thank you Ellie for your reply! Yes the hospice is going to send someone out soon for a chat So that should be ok and they know I suffer with severe anxiety. But my husband and son have been a great help and support. I like to read this forum and everyone seems nice and have a great sense of humour. We have to laugh don't we!

Thanks again Ellie!

love Sheila x

[Sheila]

Good evening Kayleigh! Yes, there has been alot of "strangers" visiting me on a almost daily basis. They are all quite young as well (especially the dietician!) You are spot on. This peg discussion has came round way too quick. I'm still trying to get my head around my diagnosis!

My son would absolutely love the marmite Easter Egg!! He loves the spread.

Your husband sounds like a good man. He spoilt you Today with all that nice Food! I use to love pancakes but I'm not so keen nowadays. My mum use make lovely pancakes when I was much, much, much younger. Lemon and sugar on Top!

Anyway! Good night for now. Speak Soon!

Love Sheila x

[Kayleigh]

Hi Sheila,

My mum used to make me pancakes too. I remember that, in those days, meals and cakes were homemade from scratch - the only ready meals were take-away fish & chips from the local chippy. I often used to help her with the cooking and baking. Happy memories of childhood!

It's great to hear that you have got such a lovely family.

Goodnight,
Love Kayleigh x

[Devonmaid]

Hi Andy

My husband's arms as well as his hands no longer work - would these gloves help him in these circumstances?

Thanks

[Devonmaid]

Hi Sheila

My husband Tony was diagnosed in October 2017 with MND which started in his arms. I know a lot of people are relieved when they get an actual diagnosis, but we were devastated. My mother died suddenly of sepsis the same week, so it was very hard. It sounds like your family are very caring and you will need their support.

My husband doesn't really like the supplement drinks, but he loves cream in his coffee, with puddings and on Weetabix. He also has a lot of grated cheese and scones with clotted cream - so not everything with MND is bad!

It does seen overwhelming at first, not only do you have the speech therapist, but the MND co-ordinator, the OT, the neuro physio etc. I feel like I am my husband's secretary at times with the constant updates, visits and new equipment etc. But everyone is so helpful. It may seem full on at first, but due to the nature of MND everyone is different. Some people progress a lot quicker, so I guess the professionals want to make sure that the process of getting equipment etc sorted happens sooner rather than later.

I agree you need to get your PEG decision soon as if you have one you need it done whilst you are relatively fit and well.

We found that although we tried to keep on top of things, sometimes things caught us out. We started organising a wet room soon after diagnosis. We had to self fund, which is quicker than going through the NHS, but we still didn't get it all done ready for when my husband needed it. When diagnosed in October he could still walk and get in the bath to have a shower, by the following January he couldn't manage the shower, so we had a few weeks when he could only have a strip wash, so get things in as soon as practical.

As for not sleeping and the anxiety, perhaps your amitriptyline dose could be upped?

The forum is a great help, support and comfort. I have found almost immediate answers to any questions I have posted. Take Care

Karen

[shrew]

Hi Sheila,
Although I'm shrew on here I am a Sheila too! My Husband was diagnosed 17/7/18, he was asked about his rig feeding tube in Dec and had in done in Jan. We only put water through it at the moment

[nunhead_man]

Hi there,

My husband's arms as well as his hands no longer work - would these gloves help him in these circumstances?

I have some weakness in my arm but my shoulder still works, so that is how I can use these gloves

It is difficult for me to say If they would help your husband without knowing him and understanding quite how much his arms do not work.

Do you have a local occupational therapist to help you who could advise?

Warmly

Andy