Riluzole, Sleep & Ventilation, OT/Physio and PEG

[Wailywoo]

Hubby took two - yes two - riluzole tablets last month and had such a severe reaction to it that he couldn't take any more. He seems to be having such a bad time of things.... So sad watching him getting worse. I think what the riluzole actually did was to give us a glimpse into the future with his MND. He was in such a state I wrote down everything he went through in case he decided to take any in future. We have a sleep & ventilation visit in about 10 days so let's hope they can help him and his getting up / walking is getting so bad that he has had a couple of falls in the last week. Each time it takes a long time to get him up again and into a chair. He is so frightened now to get up and walk anywhere. We are expecting OT & Physio to visit soon - they've not been for a while. I also think his eating is getting worse with choking fits and a persistent tickle in his throat, so we have a dietician visiting tomorrow to discuss PEG. It is all a little much at the moment and I only seem to post on here when I find it difficult. Sorry....! I seem to be helping him with more and more tasks and am not sure how much more I will be able to help him with. I don't mind doing anything at all, just that he is 6'2" and I am only 5'5" and although he has lost a lot of weight, he is still heavy for me. He spends most of his time in tears. I feel so useless as I don't know what our options are. We were advised last week to get a wet room, but I am not sure that by the time we have it all sorted that it will be any use. We had a step built outside the front door for him to go out and that is where his last fall was - it seems more of a liability than a help. He is so frightened now.

Sorry, just wanted to let off a little steam. My heart breaks for him.

Wailywoo xx

[Barry52]

Hi Wailywoo,

You are welcome to let off steam here as we all understand what you and your husband especially are going through.

Some people have a severe reaction to riluzole but most tolerate it quite well. Did you follow up on Ellie’s suggestion to contact Red Cross about the loan of a wheelchair? They normally deliver to you and they should have a suitable one for tall people. Falling is a serious issue for us and whilst we can be stubborn to accept mobility aids I know to my cost that it is wise to swallow your pride and be safe.
It was suggested in previous posts that you enlist the help of MNDA connect to pressure the health and social services which are clearly lacking in your area.

Best wishes,
Barry

[Wailywoo]

Hi Barry,

Thank you for such a quick reply. We bought a wheelchair to keep in the boot of the car, but the last couple of times we have tried to go out, hubby has taken a tumble. He doesn't seem to be able to get out of the door any more. The wheelchair we bought is quite comfy for him, so he is happy with it. The OT said when I asked about a wheelchair in the house that his muscles will waste if he doesn't use them. That was the reply...

No, I didn't remember about the MNDA connect for pressure for the health & social services. It just seems that we get visits and they just sit there telling us the same things and not really coming up with anything to help that we haven't tried. They are very nice.... the wet room suggestion I think was a little belated. I am not sure where to go and have tried contacting a place where we went to have a replacement kitchen who do bathrooms and bedrooms with no answer...not sure why... Must do some research. It seems that they come, they go and forget about him.

Hubby is having a difficult time looking ahead in any way which makes it difficult to plan anything. He doesn't want anyone else but me to look after him. I don't know how his condition will progress and it seems he is going down hill again, although he has been doing so slowly until lately. He hasn't had a fall for a few weeks, but two now in a week. It seems that everytime something is suggested he says he doesn't need it yet. Just really feeling at a bit of a loss I think. Nothing anyone can do I guess...

Wailywoo xx

[Gillette]

Hello Wailywoo, I'm sorry you and your husband are having such a difficult time. I imagine it breaks your heart to see him so often in tears. Have either you or he asked for access to a counsellor or a mental health referral?

You say you are expecting a visit from OT and physio soon - have they actually made an appointment? If not, it would be a good idea to ring them and ask them to visit. It would also be worth asking for the Speech and Language Therapist to visit to help him cope with the choking and coughing.

[Terry]

Hi Wailywoo,

I feel your pain. Don't worry about riluzole,

Do you know why he falls?

Sounds like he needs urgent help with mobility aids before he does some serious damage. As others have said, ask Mnda Connect to see if they can speed up the OT.

Many of us take Antidepressants, whilst it's not too good to take them, it could makes him a bit better.

Don't listen to him if he doesn't want things that would help you and him. Get them for later. It is a good idea to try out things before they are needed.

It would be good to go to the local hospice as they have another group of specialists that will help you two live life better.

Yes it's good to use muscles but safety. You can't use them if you have a bad fall. Again, the hospices have exercise classes and support for you.

It's not a nice journey but there are people, places and things that can help.

You shouldn't have to buy wheelchairs and most items although you might buy better and lighter ones.

Love Terry

[Ellie]

And, my heart breaks for you Wailywoo - you must be desperately overwhelmed by having to cope both physically and emotionally with caring for your beloved with his relentlessly progressing MND

Having recently lost a lovely Forum member through a fall, safety is his top priority. You said the OT & Physio are "expected" to visit soon - if you haven't a date for their visits (OT especially) contact them and request an urgent appointment. Your husband needs mobility aids, be it a rollator, wheelchair, foot braces/supports or a combo of these.

Loathsome as these may be, they’ll actually make him more independent as he’ll be able to get from A to B safely. When I got my powerchair, I had a whole new lease of life - zipping around in the wheelchair, not terrified to shuffle around in case I fell!

I am glad the Dietitian is visiting re feeding tube. And remember, just because he has a feeding tube doesn't have to mean he has to stop eating orally completely (unless his SLT tells him not to). Having a feeding tube relieves a large chunk of stress re eating, drinking and getting meds.

Is your husband linked into a hospice? They are a great source of support for both him and you - maybe counselling for you both? - and provide Nursing, OT, Physiotherapy, Complementary Therapy & a Social Worker. Is he taking antidepressants, many people with MND find them invaluable.

As for Riluzole - sorry it didn't work out for him, but it's no miracle cure, so he shouldn't feel too dispondent over it...

Big hug to you.

Love Ellie.

[Ellie]

The OT said when I asked about a wheelchair in the house that his muscles will waste if he doesn't use them. That was the reply...

That is absolute tripe, to be blunt!! Your husband clearly has a genuine need for a wheelchair for indoors & outdoors. (by the sounds of it, he'll need a ramp at the front door but that's not a big issue)

His safety is priority!!

As I said above, if he's linked with a hospice, their OTs tend to be great in getting community OTs to get the finger out, so to speak.

And, as others have said, do ask MND Connect to help - your OT's response is simply unacceptable.

Love Ellie.

[Wailywoo]

Hi Dina, Terry and Ellie,

Thank you very much for your replies.

I had a phone call this afternoon to make an appointment with the physio for Thursday morning. She is bringing things various to help with hubby’s mobility. He has a problem with his knees giving way and I think this is what lead to his last fall as he was stepping down from the step at the front door onto the slabs. His right leg has no strength or movement and his left leg is going the same way now. He ended up on his knees and with the use of several chairs placed strategically and the foot stool from the living room firstly and bathroom stool we managed to get him from one chair to another and back in the house. Took about an hour! He is losing strength now in his arms, which have been quite strong up until now with him using two walking sticks all of the time to help him walk.

There is so much to reply to in your messages.

The hospice. We were referred to a “local” hospice and they phoned up to say that we had a place offered to attend for 6 weeks each Thursday afternoon for complimentary therapy. I was shocked as this was out of the blue and two days notice. We discussed this and decided to attend a meeting to find out what was offered by the hospice. We were there for an hour the following Wednesday and after that time hubby decided “not at this time” as always! This meant that I couldn’t access any services either if he was not wanting to. I thought there were some useful opportunities, but he doesn’t see them as that. He is terribly shy and has very few people he interacts with and this is something he has always been like. I guess he is feeling that he can manage without anyone else and I don’t know if this will change... I’m afraid I’m not the same and he has never understood that and thinks I should be like him and not need anyone else. So the hospice is a dead end for now.

He isn’t taking any medication at all. No antidepressants. No thought about counselling - not sure they would be able to understand anything he says now. His speech has deteriorated quite a lot lately. He was told to use an app for use on the phone and the SLT brought an iPad last time with Predictable on, but ended up taking it away again, but not sure why. I think they need to start taking no notice of his “no” responses. He had a neck collar that broke under the chin and the physio asked if he was using it, so I said it was broken and she offered to bring another to which I said yes, but he said no, but I won out in the end. It is quite a struggle to get him to accept help from anyone!

Well I am very grateful for you all taking the time to respond to my post.

Wailywoo xx

[Ellie]

Wailywoo, I am so sorry he rebukes every offer of help, this must be so difficult for you - A) he's making his own life more difficult, precarious and painful and B) he's making your life more difficult whilst at the same time expecting you to be his sole carer. It's one thing to think a person can deal with everything themselves but when it impacts on their carer, it is selfish (sorry, I know he's your husband)

Does he know how you feel? He might be so wrapped up in the MND he doesn't notice what's happening around him?

Has he family that would either help you out or talk some to him? I know it's our choice to get life prolonging interventions such as breathing assistance and a feeding tube, but, to me, refusing braces etc sounds like he does need help in 'accepting' his MND.

IDK if his GP is any good or his MND Nurse?

You can't go on as you are, you'll crack - do you get any 'me time'? Have you support from friends?

I'm sorry I've no magic solution for you.

Love Ellie.

[Wailywoo]

Haha Ellie, you have hit the nail on the head. He is not ready to “accept” his MND. I have tried to let him know what a responsibility it is for me on my own. Our daughter has offered to stay with him and work from home (our home) so I can carry on working for my 6 hours on a Monday and Tuesday. He has a son who comes up from down south, we are in Cheshire, to take him out for a few hours from time to time and I have a few hours to myself. My best time is when I mow the lawns as we have a motor mower and it is so noisy that I can block out everything for a short while. We also have two dogs that I am taking on walks separately (both together are too strong for me) since hubby had his last fall. He was going around with me with each one on his mobility scooter, but can’t do that at the moment, but it means I can have some thinking time. I had tickets to the Harry Potter Studios for my birthday back in March and am booked to go in a couple of weeks and going with our daughter and family and hubby’s daughter and our son will be looking after him for the day, so that will be different. He isn’t coming and never was as he doesn’t want to, which is just another thing I have found myself putting up with. Either I go on my own or not at all. I am not prepared to miss out anymore. Went to India without him a couple of years ago and loved it. Went with our daughter and family. So I guess I snatch me time when I can. I have lost touch with any friends as hubby has made it so awkward over the years as he has no interest in friends. Oh well.....

Oh and the GP, last time we saw him in February after the diagnosis, said “you don’t really need to see me any more” so we haven’t seen him since. The MND nurse is very nice and was the one to mention the wet room and the possibility of a bedroom downstairs as we only have an upstairs bathroom. She comes once a month as does the SLT.

Maybe things will be a little different after he has seen the dietician and the physio. I will mention that we need some hand rails at the front door - another thing he said no to! Maybe he wouldn’t have had that last fall!!!!

Thank you so much for your support, Ellie. I really appreciate it.

With love,

Wailywoo xx

[Lynne K]

Hi Wallywoo. I'm sorry about the relentless strain that your husbands denial is having on you. I think that you've already had great advice which I cannot add anything to. But I want to second those things. I hope that your husband will soon drop his misguided defensive rejection of any help so that his life and yours can improve.

I'm glad that you get 'me time.' That's very important. Keep it up.

I feel really annoyed for you both that the doctor dropped him after diagnosis. Can your GP re-refer him to somebody else? Good luck with up and coming appointments. Love Lynne x

[Barry52]

Hi Wailywoo,

It is quite common for people with MND to be in denial and that makes it difficult for their carer. As Ellie has pointed out the statement from the OT is clearly based on poor experience of MND. It sounds like your husband has ALS and no amount of exercise will prevent muscle wastage.
Regarding getting out of the car I use this tool.

https://www.amazon.co.uk/Ocamo-Safety-HandyBar-Handles-Breaker/dp/B07LBDDY67/ref=asc_df_B07LBDDY67/?tag=googshopuk-21&linkCode=df0&hvadid=205202764240&hvpos=1o2&hvnetw=g&hvrand=18091631456562683779&hvpone=&hvptwo=&hvqmt=&hvdev=t&hvdvcmdl=&hvlocint=&hvlocphy=1006944&hvtargid=pla-700412408783&psc=1

Best wishes,
Barry

[Broostine93]

Hi Wailywoo,

Didn't want to read and run, but I wanted to say that your husband will eventually stop being in denial about needing equipment etc. in a timely manner.

My Gran was exactly the same- we very often had issues that arose from her unwilling-ness to be prepared for the 'next stage' of the illness that I would then frantically have to ring around to the OT & Palliative Team to get equipment asap. It does make it so stressful (and also very hard not to say 'I told you so').

One day, it'll be like the penny drops and your husband will finally start letting you pre-plan for equipment and things like that- things start getting a little easier after that, but it meant for us that Gran had fallen one day when nobody else was around (I was at work). By the time I found her on the floor, crying (and half laughing due to the emotional liability issues), she'd been on the floor for 2.5 hours, unable to get up by herself. Even I couldn't lift her so I had to phone my other half to help me pick her up.

Horrible as it sounds, you almost need to demonstrate the areas in which you're of no help (because you're not physically strong enough to lift him, for example). Once that message has been put across, it may be that he starts accepting more professional help.

I really hope you get the help you both need to deal with this horrid disease!

[Wailywoo]

Hi Lynne,

Thank you very much for taking the time to reply to my post. I have had a lot of useful information given here and am very grateful to hear from everyone and glad you echo the advice given here.

I don’t think we are worried so much about what doctor we see anymore. We go to a practice with several doctors, so as the one we saw regularly before diagnosis has decided we don’t need to see him anymore, we will go to someone else if we need to. We were kinda listening to his woes a little when we were there, so don’t really need that anyway!

I think things are changing around helpful things to make our lives a little easier - FINALLY!!!

With love,

Wailywoo xx

[Wailywoo]

Hi Barry,

It’s strange how I read on here how everyone seems to have been told what form of MND they have, where as hubby has not been told specifically. I am inclined to agree with your opinion.

Thank you very much for the link to the tool to help with getting out of the car, but we have one from ableworld which he tried a few times, but as his legs are so weak, he is unable to get up even when pulling on the device. It can take him about 15 minutes sometimes to get out of the car. We are looking into one of these stand aids. Not sure if we can get one for free or if we have to purchase, but it is getting harder to pull / push himself up from anywhere. We have the physio coming tomorrow with various things, so will see what she comes up with.

He has decided to go for the PEG now after seeing the dietician today, so that might help with his choking episodes, although he will be on a waiting list and it may take up to 10 weeks to have the procedure.

Thank you very much again for taking time to send your messages, advice and ideas.

With love,
Wailywoo