Riluzole, Sleep & Ventilation, OT/Physio and PEG

[Wailywoo]

Hi Broostine93,

Thank you very much for leaving your message. I have a feeling things may begin changing. He has decided to go for the PEG now. He keeps asking about getting some rails outside the front door as he hasn’t been out since his last fall, so maybe that has been the catalyst to get him accepting help. He seems finally to be getting there.

It is such a horrible disease, as you say. It is so sad to watch too.

Many thanks again for leaving your message.

Warmest wishes,
Wailywoo

[Kayleigh]

Hi Wailywoo

I hope the meeting with the physiotherapist goes well tomorrow.

Although you have already purchased a manual wheelchair, your husband should still be able to get a referral to wheelchair services - which could be particularly useful if he is interested in being provided with an electric wheelchair/powerchair.

Although his OT wasn't very helpful with her discouraging advice about him using a wheelchair indoors, it might be that she is not aware of the MNDA's advice - which is that a referral should be considered when a patient 'is starting to experience mobility problems' ... as detailed in the 'Timing your Referral' section of their information about 'Access to Wheelchairs' - link provided below:-

http://https://www.mndassociation.org/professionals/management-of-mnd/management-by-symptoms/wheelchairs-for-mnd/access-to-wheelchairs/

Of course it's up to your husband if he wants a referral to be made, but just thought I'd provide that link to the MNDAs advice in case you find it's useful.

Best wishes
Kayleigh

[Gillette]

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.

Hi Wailywoo

I just wanted to let you know that not all of us have been given a specific diagnosis of which type of MND we have. I only know that mine is ALS because I was recruited onto a drug trial involving only ALS sufferers.

It's good that your husband is starting to accept helpful interventions - hopefully they will make life a little easier for both of you.

[Music man's wife]

Hello there, sorry things are tougher for you than they should be during a tough time.

're the OT might it be useful to speak to their manager and ask for someone with experience of MND? Honestly they should be on top of the situation.

My husband says no to everything, a hospice stay, hospice at home. You name it and the answer is no. It's sad as this previously understanding and generous man has turned quite selfish. But who knows how I would be in the same situation.

Lastly the district nurses call to see us weekly. They have a hotline to the GP's and a whole range of services.

You are not alone, so take care.

[Wailywoo]

Hi Kayleigh. Dina & Music man’s wife,

Thank you very much for your messages, advice and kind words.

Thank you for the link Kayleigh.

I read it, but I am not sure what stage hubby is at currently. We had the physio visit yesterday and they offered him a walking frame for downstairs and another for upstairs. No mention of a wheelchair yet and not sure how much longer he will be able to even walk from the kitchen to the living room and from there to the stair lift and stair lift to bathroom and bedroom. She watched him try to get up and still doesn’t think a wheelchair is appropriate at the moment. Oh and she offered him a cushion to make getting out of the car a little easier and a commode on wheels for scooting around downstairs. What’s the difference between scooting around on a commode and a wheelchair?

He hasn’t been out since his last fall. I know it’s not a week yet but the longer he stays inside the more difficult it becomes to pluck up the courage to go outside again. I have asked them to fit rails outside the front door to avoid him falling again when going out. Not sure how long that will take.

He also tried a leg lifter last night to help with getting into bed and has now pulled a muscle in his back ribs and is in pain with his breathing. He is not very good with pain and has been awake since 4am - me too. I have said that I will need to help him get his right leg into bed each night (which I did last night in the end), but he is a night owl and I am a lark! He has to make a compromise and get ready and into bed earlier so I can help him. I guess it will take time for him to adjust, but he has been tired and going to bed a little earlier over the last week or so, so maybe it won’t be such a shock to either of us.

Sorry Dina, I must stop assuming stuff. I was not aware that not everyone knows what type of MND they have. I have just seen it so many times and assumed that doctors / neurologists stated the type, but we weren’t told. Sorry again.

Music man’s wife, I am sorry that your husband also says no to any help. I was kinda hoping hubby would make some use of the hospice facilities, but it is not to be - at the moment yet anyways. I was hoping that I could also have some help there, but that door shut when he said no. I actually said to him before the physio visit yesterday - don’t just think about yourself when things are offered, think about me too! I think we are getting there slowly but surely. I think overall it was a positive experience yesterday with the physio.

We don’t have a district nurse visiting at all.

Well, thank you very much all again for helping out when I was feeling a little desperate!

With love,
Wailywoo xx

[Gillette]

Hi Wailywoo,

No need to apologise, I was simply hoping to reassure you that we don't all have such a detailed diagnosis.

I'm so sorry that you are having such a difficult time. It can be so frustrating when someone refuses anything that might help. I know that I am sometimes guilty of saying no to something that would help. Although I have accepted that I have MND, I sometimes refuse things because they are "for disabled people" or "for old people". It's silly, isn't it? I have to have a bit of time to adjust or to find something that doesn't make me feel "disabled" or "old". Maybe your husband feels something similar?

Sending you a big hug.

[Wailywoo]

Thanks Dina,

I can very well understand that feeling and feel it is similar to hubby’s way of looking at things.

I was a little shocked yesterday when he said that he felt guilty for needing things and assistance and that he felt he didn’t deserve it. I really don’t know where that came from and said it to him! If anyone deserves help and assistance aids then everyone with a seriously debilitating disease like MND does! I was quite angry that he should think that way, but he has never had to have help in anyway before, so he is finding it very difficult to cope with being in need.

Sending hugs to you,

Wailywoo xx

[Ellie]

I'm so glad things are a wee bit brighter Wailywoo - hopefully once he gets the walkers he can feel more confident about getting around the place safely, and find his mojo...

We can be a stubborn lot and resist help - we just want to be able to do things by ourselves and for ourselves - but when we see how aids make our lives easier, we come around.

It's a shame his OT is useless - proper OTs look at how they can improve the daily life of their clients, including getting in and out of bed.

The GP should refer him to a Community Nurse, or maybe his MND Clinic or MND Nurse will? If he has a feeding tube, he'll likely get one anyway (unless the MND Nurse does tube care post-placement) I'd get the MND Nurse involved in the wheelchair too as it can take months to get one. When is his next Clinic appt?

Hopefully things continue on a positive note for you both, even if it's baby steps!! It'd be great if you got the odd massage in the hospice and could talk to their counsellor. As you told him, you're in this together.

I'm glad you found support from the Forum, we really do know what you're both going through.

Big hug.

Love Ellie.

[Gillette]

Hi Wailywoo,

My MND journey began in earnest almost immediately as I lost the ability to walk in less than a month after diagnosis. That meant that lots of community teams, equipment, nurses, hospital visits and more began as soon as I was discharged from hospital. Like your husband, I felt guilty about having or being offered so mUch from the NHS. I felt that it was unfair on other people that I was jumping the queue and using so many resources - costing the NHS so much - when we all know how stretched they are. It may be that part of your husband's thinking is similar.

There are so many facets to having something like MND making it such a massive change in our lives.

[Terry]

Hi Wailywoo;

He should not feel bad needing things and hopefully getting most things free. It is very important to keep you healthy and feel from physical troubles as well by having things that help him.

You get thousands of people that have not put anything into the system, that claim and probably could still work etc. normally.

I would think that a walker with some weight in it would be far safer for your hubby. Also a hospital type bed would probably make getting in and out a lot easier.

Also because they buy things in such large numbers, probably from china direct, they are very cheap compared to what we'll pay.

Love Terry

[Wailywoo]

Sooooo........ I am sorry I have not replied to the last few messages! I have been doing more since hubby couldn’t go out, but I am pleased to say we have found a safe way for him to get out of the back door while we await a visit from the OT tomorrow. I have had to chase that up!

Hubby went out with me on his mobility scooter yesterday to walk the dogs - something he hasn’t done since his last fall. We also went to see the sleep and ventilation doctor on Friday, which was the catalyst to him getting him out of the house. I did book an ambulance for him to go to the hospital appointment, which is about 15 miles away, but as I could not go with him in the ambulance, which he was unhappy about, it gave him incentive to find a way to get out safely before I cancelled the ambulance, which was a success. There was no way I would cancel until he had been out into the car and back in the house safely.

Ellie, we don’t see the GP and haven’t since February after diagnosis, so can’t see us being referred to a community nurse. The dietitian will be visiting regularly about the feeding tube and we have another appointment booked with her in August. We are on a waiting list for the tube, which could be up to 8 weeks. His choking has subsided with the easy remedy of an increase of the amount of thickener he is having in his drinks, so that has been a relief. It has been difficult for him to accept that he needs thickener in his drinks, but he is getting there when he sees the difference. His eating has started to become a problem with him saying he is not hungry!

I don’t know what to say Dina, your situation sounds awful with such a quick movement from walking to not being able to at all! I really feel for you! It is such a horrible thing when it gets a hold! Sending you big hugs.

Terry, do you have a recommendation for the heavier weight walker? The aluminium frames he has that were provided by the physio are a bit light and I worry if he knocks them into something in a moment of frustration that he will end up on the floor! He gets very frustrated, which is understandable, but just want him to be safe. He really doesn’t need to add to his woes, as with everyone in this situation, by ending up in hospital.

We are in the process of getting a quote for a wet room and are planning a room downstairs attached, which is a garage conversion that we had done years ago, which now seems to be coming in handy. We have a big job of clearing out a load of stuff to accommodate it all, but have help from the family. The big stumbling block is hubby’s permission to get rid of stuff! That’s always been a stumbling block hence the “garage” is full to bursting with unnecessary stuff, but hopefully he will see the merits of it all. Maybe when it is necessary, we could ask about a bed for him, Terry, to put into the room to help with getting in and out of bed, which seems to be becoming worse?

Will try to revisit the hospice possibility in a few weeks and see if hubby is more open to things then. As you say, Ellie, baby steps.

Much love and hugs to you all.

Wailywoo xx

[Ellie]

I am so pleased for you both Wailywoo that things are starting to improve - it can be very hard to see the wood for the trees when there is so much happening and so much to do.

I guess it's 'pick your battles' for now - clearing out the garage is to be tackled before mentioning the bed!! The hospital bed/profile bed is really useful as it can be lowered or raised for ease of access. I HATED the idea of getting one, but it's been a great help to me, my tall husband and my carers and it makes thing easier for sure. (plus I raise the foot and head of the bed for comfort and better positioning)

Onward and upwards...

Love Ellie.

[Gillette]

Hi Wailywoo,

Thank you for your kind words and hugs. Actually, I coped well with losing my mobility as using a wheelchair is almost as good! Other symptoms are more difficult to get my head around.

I'm pleased for you that your husband is going out now. It's a big thing, going out. I have found that I feel very vulnerable when I'm out alone in my wheelchair.

Even though you haven't seen your GP, I would have thought the community teams would have sprung into action. I would suggest speaking to the OT about it.

Sending my best wishes and some hugs.

[Lynne K]

Hi Wallywoo. Terry didn't mean a heavy walker. What is needed in any 3 wheeled walker is some weighty things put into them to make them more stable. If his walker doesn't have a bag or basket then you ought to be able to source one or another online. If he is using a 3 wheeled walker he has to be careful to only put his weight through the handles, straight down and not lean across the walker towards a 45 degree angle or thereabout because they can tip over. I've had mishaps like this a couple of times. A 4 wheeled walker is much more stable but the 3 wheeled is better in confined spaces, like around the home. Anything else you want to know then just ask. Somebody will most likely have an answer or suggestion. Lynne

[Kayleigh]

Hi Wailywoo

Perhaps your husband has a 'walking frame' (zimmer frame), rather than the style of walker (sometimes referred to as a tri-walker or rollator) that Terry has mentioned?

Terry will be able to correct me if I'm wrong, but he usually recommends to put a plastic bottle of water (approx a gallon) in the bag to give it extra weight which makes it more stable.

Your husband's OT might be able to supply your husband with a 3 wheeled walker (sometimes referred to as a tri-walker) or a 4 wheeled walker (sometimes referred to as a 4 wheeled rollator). Examples of each style are on the Careco website:
http://https://www.careco.co.uk/cat-wa02/tri-walkers.htm

http://https://www.careco.co.uk/cat-wa01/rollators.htm

Best wishes
Kayleigh