Frustrated

[Drumond30]

Not really sure where to start but I'm frustrated that I feel like everyone is giving up including my Dad. He was diagnosed in December and there has been noticeable decline since then, his mobility is not good, he's speech is bad, he is finding swallowing more difficult and he has recently started to become breathless.

The nurse has suggested a feeding tube (stoma) for when he needs it but I strongly feel this is going to push his decline further, certainly from a mental point of view.

He is on no medication, he can still drive, he can look after his personal care. Noone seems to be focusing on what he can do, only what he can't and what the next few months might bring. Noone is talking about medication to help manage some of the symptoms. I'm frustrated and angry that people just seem to be waiting for inevitable and that's just going to bring it on quicker. I'm I wrong?

[shelly21]

Its an awful thing watching your father decline. Do you know his wishes? Did he decide that he didn't want medication etc. I have a peg as keeping nutrition up is a must .

Will your father open up or is he a private man. I know of other people who have decided not to take medication etc.

[Drumond30]

He was put off medication right at the beginning by the stupid consultant that gave him his diagnosis, 10 mins to tell him he had MND and that the medication is pointless and could give him liver (I think it was liver) failure. The 2nd consultant was better but basically didn't give him much more information than its your choice. He is struggling with saliva which I suspect is not helping his swallowing and speech. I know there is medication for this but it hasn't been offered. It's gone from nothing to a stoma, is that a PEG?

Dad doesn't know what he wants right now, its all too much.

[Hakuna]

I also resisted getting a PEG. I was diagnosed in September and I wanted to carry on normally for as long as possible. BUT I delayed too long and by the time I had the PEG fitted in December I was quite poorly. It took 10

[Hakuna]

Whoops pushed the button before I meant to. It took 10 days in the hospice before I felt better. In hindsight had I had it done earlier I may not have got so poorly. You don’t have to use it but its there ready for when you. I may not have lost 3st in weight had I done that.

[Drumond30]

Thank you for the reply and your honest answer. I'd be more comfortable with this suggestion if I felt they were managing his symptoms now but I don't feel they are. He met his specialist nurse once before she saw him yesterday and suggested a referral for a PEG. Is that even her place? Is that not a consultant discussion? He's only seen his consultant once and I'm not sure she is actually an MND specialist. OT support has been good, the dietician has been useless, she saw him for the 1st time yesterday despite them asking to see her as his weight loss has been rapid despite a good appetite still, speech therapy none existent and the ventilation nurse has been good, she was happy with him 2 weeks ago.

[shelly21]

The specialist nurse would do the referral for the peg feeding tube. I also only saw my neurologist once for diagnosis. However he encouraged me to start riluzole straight away. Yes it can cause liver serums to rise but mine did but then after a few months went down.

I think your father has been treated very poorly re neurologist. There are lots medication that help re muscle spasms, saliva issues etc. But your specialist nurse should be offering this.

[denise]

Hi
I know it isn't easy. For my husband I felt like I was waiting for the cavalry to turn up. But they didn't really to be honest. He started with riluzol, which is the standard medication, and its been like a constant question we all ask if it is worth it. No one seems to know. Stephen stopped taking it as we thought it was adding to his anxiety. It really has to be your dads choice.

As for the things he can do. Yes that's a good thing. That's what I say to my husband ok you keep telling me what you can't do tell me what you can do.

I suppose the consultant will want you to realise what you could be facing but then again no one knows what is going to happen next. It's easy to prepare for somethings others you just don't know. What I don't like is the negative stuff that comes up with my husband sat there and I'm expected to discuss him with him listening. My husband has ftd as well as mnd so that brings up other issues.

Stephen had a peg fitted over a year ago. It was traumatic having it done but it was a very easy operation. The thought of it was worse than the reality. I had it done basically because I wanted him fit enough to recover. It was an option if he had problems eating, breathing or just went off his food. Also gives an option to administer meds. It doesn't bother him.

We don't really discuss my husband's illness. We try to be normal - well as normal as possible. Dont look too far ahead. Take each day one day at a time. Its something you have to accept and live with. I know that sounds heartless but it keeps you from breaking down.

Sorry if I've gone on a bit but it's not an easy call. Love and hugs to you and your family.
Denise xxx

[Ellie]

Drumond30 Did your dad, mum or you look into transferring his care to an MND Care Centre in a different hospital? xx

[DeeH]

Hi Drumond30


It is very frustrating, sometimes you need to read them the riot act. And push symptom control.

There is a patch to control saliva and other things/symptoms but it can cause other issues, everything can have side effects.

It is a travel sickness patch (hyosine) husband said it worked quickly but it dried up his voice which was fading. But better than having the saliva issue.

Some of our first "team" seem to just be quite negative and seemed to think we should just wait for my husband to die.

We had to move to get suitable accomodation. The new OTs have been good, but trying to get ahead of things is difficult.

I wish my husband had agreed to a PEG as we are having problems with nutrition and medication in the last month.

But this was his choice over the last 20 months since diagnosis. He has reafirmed a number of times, he understands the consequences.

It is very hard to watch and support, as he loses weight (we have dietician and just found out that the Speach and Language Therapist SALT has discharged him. I have a support call weekly with Hospice Family Support.

There is alot you can get for symptom control and if you use the search function on here. It will be discussed.

You have to discuss with the team that not getting a PEG is not denial.

It is hard to deal with balancing trying to be normal with this condition.

Best wishes and I have found great support on this forum

Donna

Carer for husband, diagnosed on July 2020. MND of the Fail Arm Type (at age 56)

[TinyLady]

Drumond30 - sorry to hear you are finding it frustrating to get the support you want for your Dad.

I was diagnosed end of November/ confirmed January this year. My mobility is poor, my speech poor and swallowing not great. Plus have lost a fair bit of weight and got sent to the hospice for fattening up....

Met my MND nurse via video chat last week and she was keen for me to have a PEG. But I have decided to wait as there is so much still to do that feels very urgent. I have managed to re-gain some weight too.

I think I had hoped for a plethora of expert help once diagnosed, especially as it was quite a late diagnosis. But reality has been finding things out myself (mainly on here - thank you all !!!), asking and chasing.

Sending hugs to you. This must feel really tough and overwhelming xx

[MMG]

in terms of a PEG we opted to have it fitted before it was necessary. Glad we did as the decline in swallowing was very rapid and had we waited he would have lost a lot more weight.

It was fitted mid November, and by January more or less totally reliant on it.

We were advised that its better to have it done whilst breathing is ok and before its actually required. I don't think having it done speeded up the decline. The SALT referred for it. I think anyone in the MDT team can.

We only see (or speak on the phone) to the
MND consultant rarely, last time 1st Sept and next time 30th March. However lots going on in between by other parts of the eider team, including hospice.

[EvelynMW]

I have already decided I don't want, ever, to be PEG fed. All of you that live with this, you have made the decision, and you have chosen to accept it. We are all different and I shall choose to say no.
I agree that OT are the best, try them before others, that should be concentrating on what opportunities there are for doing more.

I think I saw a comment on Riluzole . I was told it could add 100% to your survival. I think it was Graham that said, 10% of 3 years, is much less than 10% of 15 years. So, I take 2 riluzole a day, and will continue to do so.

I started on 2 a day, had unpleasant side effects, went back to 1 a day for a while, then back to 2. Anything extending my life has to be worth a try

[Banned]

Not me EvelynMW .

I don't take it too. Originally I was not prescribed Riluzole.

Hope it works for you Evelyn.

[Aidan in Shrewsbury]

I have already decided I don't want, ever, to be PEG fed. All of you that live with this, you have made the decision, and you have chosen to accept it. We are all different and I shall choose to say no.
I agree that OT are the best, try them before others, that should be concentrating on what opportunities there are for doing more.

I think I saw a comment on Riluzole . I was told it could add 100% to your survival. I think it was Graham that said, 10% of 3 years, is much less than 10% of 15 years. So, I take 2 riluzole a day, and will continue to do so.

I started on 2 a day, had unpleasant side effects, went back to 1 a day for a while, then back to 2. Anything extending my life has to be worth a try

I started on Riluzole a couple of weeks ago. No side effects at all thankfully but to be honest I would say they are doing nothing to slow down progression of the illness at all.