Pain/Agony

[MNDConnect]

Hi Lynne

Not everyone with MND has a PEG. Some people choose not to have one and for some people they don't experience any swallowing problems and so don't have one.

People often have a PEG fitted quite early on or as soon as swallowing symptoms start to appear. Having the PEG doesn't mean that you have to use the PEG. You can have a PEG fitted and carry on eating and drinking. This means that the PEG is already in place if and when it is ever needed. People often first use the PEG for medications as it takes away the difficulty of struggling to swallow tablets.

If you are having some swallowing difficulties then it's worth mentioning a PEG to your healthcare team. They could tell you more about the procedure so that, should you need one, you can make an informed decision about it.

Best Wishes

Rachel

[Lynne K]

Thanks Rachel. I'll speak with my neurologist when I see her next month. Lynne

[Ellie]

Hi Chrissie,

So glad your Gran has recovered well and is back in the nursing home.

Ellie- I read up about feeding tubes and aspiration-related chest infections/pneumonia and it said that PEG doesn't decrease the risk- in fact, it increases it!

In ALS/MND, a feeding tube is not associated with an increased risk of aspiration, but it does decreases the risk. As Rachel said, giving feed or liquids through a tube should NOT be done when the person is laying flat or almost flat.

I saw the link in your post discussing feeding tubes and it's not really appropriate to compare PEG placement and use in a person with MND who cannot safely swallow, with people who are failing to thrive, have cancer or GI issues etc.

But yes, as with all surgical procedures, from the removal of a toenail to cardiac surgery, an elderly person is more at risk of complications and that goes for a PEG procedure too.

It is a complex decision for your Gran to make and I wish her well.

Take care (hope your stress levels are somewhat reduced!)

Love Ellie.

[Ellie]

Hi Lynne,

Sorry for butting in !!

Maybe ask your SLT for a videoflouroscopy swallowing assessment ?

It's a live X-ray video of you eating, for example, barium infused yoghurt, crumby biscuit and drinking water and will pick up on any subtle difficulties on how you swallow different textures - it's also pretty cool to watch

That way you can keep track of what's happening and give you an idea on whether or not you'd benefit from a feeding tube.

Love Ellie.

[Hayls]

I feel like my pain tolerance has become super hypersensitive since having my feeding tube fitted, any pain makes my breathing become erratic and that can make my EL start up which in turn causes more pain, is it known that stress or trauma can impact on the speed of MND, I’m certain that seeing my Dad at the end of life had put a huge toll on my mind and body and all my MND symptoms started shortly later, since having my RIG fitted my mobility has dramatically deteriorated to the point I’m waiting for a wheelchair to get out more, I’m now in desperate need to move home and I’m terrified that the stress of moving will make me deteriorate more, if it is known that stress can make MND worse could someone let me know or am I just going crazy, wish I could make sense of it all

[Ellie]

Dear Hayls,

(I know I'm not MND Connect but it's Sunday so I'll reply today)

Please remember just how much you’ve been through in the last 18 months - your beloved dad died; you were diagnosed with MND soon after; you got married - now you’re trying to adjust to living with a progressive disease and all of its challenges. It’s no wonder you find yourself floundering and I’ll bet you haven’t had time to grieve for your dad yet. So, cut yourself some slack Girl you’re not expected to be a Superhero and cope on your own - please, please ask for help.

Are you taking anything for your EL? Many people take an SSRI antidepressant and find it helpful. What other meds are you taking? And, with the tight stitches out, are the doctor and nurse happy with how you’ve healed post-RIG? (Soz for so many pesky questions)

Is there anyone you can talk to? If you’re linked into a hospice, avail of their services - counselling, nursing and complementary therapies, as well as physio and OT - if you’re not linked in, it’s a good thing to do. Is your GP any good or your MND nurse maybe?

And, if you don’t mind me asking, where are you if you’re not at home?

Sending you a big hug.

Love Ellie.

[Hayls]

Awww Ellie, hubby and family are right by my side but I worry telling them how I’m feeling incase I’m over reacting and they are dealing with their emotions of seeing me change so quickly that I don’t want to add to their challenges! Docs have changed me from Sertraline and now introduced Citalopram which has caused me to have panic attacks which I’ve never experienced before and never realised just how powerful and real they feel, I think I’ve realised when they happen and can calm myself down, I have a palliative care nurse and a team of people but I wonder if anyone has noticed a significant change in their condition after stress or Trauma, I remember reading that some people developed MND following accidents which I wonder if MND is affected by stress or trauma, I’m sure it’s linked, thank you Ellie for your reply, your a superstar

[Ellie]

There is anecdotal evidence that prolonged stress can speed up progression of one's ALS/MND Hayls.

If a person is stressed, they are more likely to have poor quality sleep and not eat well, both of which are important for overall physical, emotional and mental well-being. Trauma, including falls, can similarly take a toll on progression. It's the whole package of stress and/or trauma which can speed up progression of MND.

I believe it takes a while for SSRIs to kick in and you may need a higher Citalopram dose to control panic attacks or to try a different med. I'm sorry you've had panic attacks, they must be very frightening.

Great to hear you've good support and I know what you mean about not wishing to worry your family, but you shouldn't have to keep your worries bottled up I had counselling so could off load all my worries onto a complete (professional) stranger. Are you able to ring MND Connect? And talking face-to-face is really helpful.

Love Ellie.

[Hayls]

Unfortunately my voice isn’t understandable face to face to people who have known me all my life, nevermind on the phone lol
Oh Ellie you are the voice of reason, Im still in discomfort from the RIG procedure so my body and usually strong mind has a lot to deal with at the moment, I think I’m so shocked how this procedure has had a negative impact on my quality of life, when I thought it would give me a better quality, thank you Ellie, I’ll remember your advice and snug up for the evening and tomorrow will be a new day to try and shine, Ellie you are inspirational

[Lynne K]

Hayls, I won't butt in to your chat with Ellie, but wanted to send you an electronic hug, Lynne x

[Sheila]

Hi Hayls, sending you lots of hugs. Your story sounds alot like mine, my mum died 2017 the grief hit me very hard. I wonder if this brought on my Mnd. I had my peg done in December and it certainly has taken alot out of me, mobility poorer, mood low, and my voice has gone. I don't think stress helps at all, and I have suffered panic attacks for years. My husband and son have been brilliant, let's hope tomorrow will be a brighter day.
Sending hugs
Sheila x

[Ellie]

Oh Lynne, please don't ever think you're butting in The more opinions and discussion the better

Love Ellie.

[MNDConnect]

Hi Hayls

I'm sorry for the delay in responding to your post. It looks as though Ellie covered everything (thanks Ellie ).

There is anecdotal evidence to show that stress might impact on the progression of MND but I'm not aware of any official research that has taken place regarding this. I think the impact of stress on the progression of MND is believed to be minimal so please try not to worry too much about this.

As Ellie mentions, it takes a few weeks for SSRIs to take effect. Sometimes they can cause various side effects, such as panic attacks, when you first start them. If you are still experiencing these then please speak to your GP as there may be a more suitable medication that they can change you to.

Best Wishes

Rachel

[Hayls]

Good morning everyone, awww Lynne that hug is doing wonders this morning
Oh Sheila, now I’m sending you the biggest hugs I can muster, we have both had a tough time, I feel like a moaning Minnie, I know everyone has had there own journey and more challenging times, I use to be the strong one but I’m such a pansy now, hope it’s a temporary side effect from the Citalopram, Rachel thank you for responding, Ellie is the voice of reason sorry for the late reply, I was admitted to our local Macmillian Unit as I’ve been so poorly and it looks like they’ve got the medication right to help and in turn my mobility has improved since being here, I’m no longer on pain medication Wohoo! And I’m keeping everything crossed that I might be able go home this week, everyone keep your fingers crossed and I’m keeping everything crossed for Terry he gets to go home tomorrow, big hugs to everyone xx

[Lynne K]

Fingers crossed for you Hayls, and Ellie thanks xx