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Catsparkle
26th August 2019, 20:26
Hi all, I've got quite a bit worse in the past 6 months. Have bulbar involvement now,and what a bugger it is when you cant go to the loo by yourself anymore! I love having the carers in though. And my beloved ex is working through my bucket list with me 😁
So,yes, peg consultation this Thursday , i know its sensible, my swallow is going as is my last arm, but ive been finding it very upsetting..

Lynne K
26th August 2019, 20:43
Good luck with your Peg consultation. I'm sorry about your deterioration Catsparkle. Take care. Lynne

Gillette
26th August 2019, 20:49
Hi Catsparkle,

Sorry to hear that your condition has worsened. I am in a similar position and am due to have my PEG fitted next Monday .

Do you have NIV? I have recently been told that the NIV will be in use during the procedure. If you don't have any breathing difficulties I imagine they would use regular sedation to insert the PEG.

All the best for your assessment on Thursday.

Catsparkle
26th August 2019, 20:54
Thankyou, my breathing was checked and was fine, so they'll sedate me. Good luck with your procedure Gillette, lots of love x

Terry
26th August 2019, 21:08
Hi Catsparkle;

It's a big step in your mind but a short small opp carried out with local anesthetic normally.

It is there for a back up if needed.

Love Terry

Catsparkle
26th August 2019, 21:24
Thankyou Terry x my consultant mentioned i could need it for meds, and there is no way in on earth i can do without my antidepressant! Im still putting on weight, so presumably it will be a bit til its used, but i know physically it's better to have it in earlier.

Kayleigh
26th August 2019, 21:26
Hi Lisa,

I can relate to what you are saying about how upsetting it to lose our ability and independence to do some things. It can take time to get used to needing help but Its good you have got some carers to help you and hopefully you are happy with them.

Sorry to hear you have problems swallowing. I don't have experience of a feeding tube but it sounds like a good idea so that you can still get all the nutrition and any meds you need.

Its great to hear your ex is being helpful with ticking things off on your bucket list. I hope your lovely daughter is ok and everything got sorted out concerning your housing.

Love and hugs, :)
Kayleigh x

Catsparkle
26th August 2019, 21:32
Two weeks to go Kayleigh! We've had to stay at my parent's for almost six months which has been challenging, but the flat is shaping up lovely 😁
The daughter is starting secondary school soon !

Kayleigh
26th August 2019, 23:56
It's great your flat is nearly ready Lisa. I'm sure it won't take long for you and your daughter to settle in and add your finishing touches to make it comfortable and homely.

Not long now before your daughter starts secondary school. I hope she enjoys her time there and her first day goes really well.

The Summer hols will soon be over but at least the weather has been good and hopefully you've had some sunny and enjoyable trips out with your family.

I hope everything goes smoothly at the consultation on Thursday.

Best wishes to you and your daughter and I hope everything in the coming weeks goes well for you both.

Love
Kayleigh x

Catsparkle
27th August 2019, 10:57
Thankyou lovely, i appreciate it xx

Ellie
27th August 2019, 12:58
Hi Lisa.

Of course it's upsetting for you - it's a brutal reality check isn't it :(:( At the same time, you know it's the sensible thing to do, and, once it's done, it'll take one bit of stress away.

If I can suggest something to you? It is always best that children know exactly how and why equipment and aids will help you, so maybe have your daughter give you a "drink" of water through your PEG so she will understand more and the tube is nothing to fear.

My own kids used my PEG from a young age and I often was a "Show & Tell" subject as they revelled showing their friends how to give me food and water!! The concensus was it was "so cool" :D:D

Hope your daughter enjoys her next big adventure of secondary school.

Love Ellie.

Catsparkle
27th August 2019, 19:06
Thankyou ellie, i really really appreciate that advice. And yes, i definitely need ti have it, but i dont want to neeď it! But we've planned in a trip somewhere nice afterward, and my nutritionist is going to hold my hand (or see i don't back out,haha!)
Lisa x

Sheila
27th August 2019, 19:42
Hi Lisa,
I am going through the same thing about the peg as well. I somehow need to get over my anxiety about it. The nurse said to me, you can always back out. Which dosent really help. Let us know how you get on Thursday.
Sheila x

Ellie
27th August 2019, 20:15
Hi Sheila,

It must be really hard for you with your anxieties to go through the whole thought process of whether or not to get a feeding tube, then to have the procedure - I'm sorry.

I'm glad you've a supportive hand-holder :)

Do you think there's anything that would make you even a bit less anxious? Is there anything about the whole thing that particularly increases your anxiety?

Love Ellie.

Sheila
27th August 2019, 22:55
Thanks Ellie, I think it is the thought of tubes going down my throat and into the stomach. Even thinking about it makes me gag. I know I am being silly, but it is a major thing for me. I don't mind so much about the hole they make into the stomach, if they could do it all from outside I would feel calmer. But there you go I have to get it right in my head and over come these anxieties. Also I fear choking during the procedure and bleeding. The list goes on. Thanks for listening Ellie you are very kind and have lots of knowledge,
Speak soon.
Love Sheila.

Terry
28th August 2019, 00:42
Hi Sheila,

They might well recommend that you have a RIG, which is a very similar result but carried out from the outside. You do have a little tube put down through your nose but I hardly felt it, like you I was scared of gagging.

I don't think that a RIG is quite as good as a PEG but they will advise and hopefully listen to your concerns.

If you want to know more than there is a information sheet on the subject and I can sort out a link tomorrow.

Love Terry

Ellie
28th August 2019, 14:21
Sheila, you are not being silly - everyone is terrified of something and, no matter how irrational that fear may seem to others, to the person with the fear, it's very, very real.

This will sound odd but, do you think if you watched a video several times of doctors doing a PEG procedure that it would 'desensitise' your fear of having the procedure? This would, in theory at least, lessen your anxiety over the procedure by exposing you to very thing causing your fears. It's maybe something to think about...

And just to stress to you that you will be sedated for a PEG procedure, so you will be asleep and oblivious to any tubes or scopes - you will wake up and everything will be done. You can make the endoscopy team aware of your anxieties.

Anyway, I won't go on about it. I really just want to say please don't think you're silly re your feelings.

Big hugs to you.

Love Ellie.

Sheila
28th August 2019, 15:50
Hi Terry,
I did mention the rig to my nurse, but she said there was a alot of mucus involved and didn't seem keen. But I see on here quite a few people have the rig. I think it could help me, seems a better way maybe.
Thanks Terry.
Love Sheila

Sheila
28th August 2019, 16:02
Hi Ellie,
I have watched on you tube the peg procedure, it didn't help much. The nurse at the hospital said I would get a throat spray and that's all. She must be wrong because no way I could get through that without sedation.
Thanks again Ellie for your help.
Love Sheila.

Ellie
28th August 2019, 16:33
Hi Sheila,

If your breathing is good, the preferred method of fitting a feeding tube is by the PEG procedure, if your breathing isn't great, the RIG procedure is preferable.

In the PEG procedure, patients are given intravenous sedation. This is because they must be relaxed for the endoscope to go down the throat.

In the RIG procedure, patients are not normally sedated, but get a local anaesthetic nasal spray for the tube that goes up the nose and into the stomach, through which air is pumped so the stomach is inflated.

Love Ellie.

Sheila
28th August 2019, 19:44
Hi Ellie,
Thanks for explaining all that to me. Now I know the different ways for the peg and rig. I see the breathing nurse on Friday. It was ok last time. But I have noticed a strange breath comes out, usually after sleeping or a nap. Maybe nothing to do with Mnd. But I will mention it.
Thanks again Ellie
Love Sheila

Catsparkle
28th August 2019, 21:22
That's good to remember , the sedation.. good luck sheila xx I'm worried about the cut and tube i think, ive still got to get to grips with that. But then i thought people helping me to the loo would be awful,its just normal now.

Ellie
28th August 2019, 22:18
Hi Lisa,


I'm worried about the cut and tube

The hole is very small, only about 5-6mm wide.



i thought people helping me to the loo would be awful,its just normal now.

Very true!! It's amazing what becomes "normal" isn't it??

Love Ellie.

Catsparkle
28th August 2019, 22:37
Haha, going to the loo has brought me and my ex closer i think..it's the massive pants wot dunnit 😂

Kayleigh
30th August 2019, 12:00
Hi Lisa,

I hope everything went well at your consultation yesterday.

Love Kayleigh x

Devonmaid
30th August 2019, 17:44
Good to get the PEG in early. Tony is now using it for all meds and lots of fluids and x2 meals a day. He is now on thickened fluid and a pureed diet. He had no real problems post op. Take care

Catsparkle
30th August 2019, 20:11
Thankyou x the consultation was pretty horrible actually, a summary of my current and near future frailties including respiratory-although I knew Id been cleared , because I'd had to redo my night oxygen (the finger grip slipped off) she didn't have the respiratory data so had to go through that too. I don't know, I'm diagnosed autistic, so i loved the accurate information but yeah. Waiting on resp to decide peg or rig .

Kayleigh
30th August 2019, 22:41
Hi Lisa,

Sorry that the appointment yesterday was unpleasant. I expect you were glad to get lots of hugs from your lovely daughter afterwards!

I hope you have a relaxing and enjoyable weekend.

Love Kayleigh x

Sheila
31st August 2019, 11:52
Hi Lisa,
Sorry your appointment didn't go to well. It's one thing after another isn't it. And I hope your cold gets better soon.
Love Sheila.

Hayls
31st August 2019, 21:26
My MND started with swallowing and voice and has started to go to my limbs, luckily my breathing is still unaffected, my consultant has referred me to have one fitted ASAP as Iím struggling to drink enough, I wish you lots of luck, Iím looking forward to mine so itís less of a worry further down the line, I hope it all goes well, big hugs

Catsparkle
31st August 2019, 21:30
Thankyou x youre from my part of the world i think, Bournemouth way?

Hayls
1st September 2019, 00:24
Hello Cat,
Yep, I live in Bournemouth but my Fiancť lives west Dorset so Iím half and half, what part of the neck of the woods are you;)

Ellie
1st September 2019, 11:19
Hayls, you won't know yourself once you have a feeding tube!! It takes the daily stress away re drinking enough etc. and it'll be a relief for your fiancť too, not to see you struggle.

Best wishes to you both.

Love Ellie.

Catsparkle
1st September 2019, 12:05
I'm I'm lymington way,other half lives in southbourne. Do you go to soton MND centre or is there a dorset alternative? Anyway, feel free to pm me:)
Everyone does say the peg/rig helps ease worry, just like my Walker does , there's always that bit of adjustment before you see it prevent something or make things easier and really rate it..

Hayls
1st September 2019, 21:50
Awww thank you Ellie, your so right, heís always checking Iím OK and every slight cough I have, heís a rabbit in headlights, heís worrying about me and Iím worrying about him worrying too much lol, we are a right pair ;)
Iím dreading the drinking more and more, Cat, Iíve had similar concerns about the procedure but I must admit my worry multiple times a day of wondering if this mouthful will cause a spasm and make me block my airway/ throat or aspiration that gives me a chest infection, Iím so fed up of feeling like this that Iím ready to do whatís necessary to ease the pressure off myself, fingers crossed.
As Iím newly diagnosed, Iíve been told there is a group locally and there was no meet in August so first meet is the 24th September, my Speech and language therapist explained that many members are not near my age however I explained that some days I feel 100 and some days Iím 21 again so Iíll love to meet anyone of any age because I believe we are as young or as old as we feel, I have no idea how to PM but itís nice to meet you

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