Getting off the loo

[Guest]

Hi All
I was diagnosed with MND in July 2012 and have been gradually going downhill ever since. Up to recently I have been fairly mobile, living downstairs and using a trolley for support but lately my arms have weakened and getting out of my powered chair and off the loo have become a problem. I have seen hydraulic seats for toilets that would be a big help but they are very expensive. Do you know of any grants available for this kind of equipment? I was told to contact you by the local hospice which I visit once a week
Many thanks
Dugald

[Bonzowoof]

Hi
Just realised I have misled you. My symptoms started in about July 2012 but I was not diagnosed until July 2014.
Apologies
Dugald

[Terry]

Welcome to the forum Dugald;

It would be good to ask your OT and also the OT's at the hospice. I have a sit to stand electric hoist that my wife can use if my back is bad or I have other problems. Will a grab rail in front of you do for a while, maybe even a fold out one the same as the ones that are used on the side of loo's but use one higher and in-front.

It is nice to keep your independence as much as possible, so something does not require others is the best answer. There are also many frames and raised seats that make it easier to get up.

Best wishes, Terry

[MNDConnect]

Hi Dugald

Do you have an Occupational Therapist (OT)? We do provide Support Grants which can sometimes be used towards the cost of equipment. We would need an application form to be completed by your OT. You can find out more about the Support Grants and access the application form on our website here http://www.mndassociation.org/gettin...ople-with-mnd/

If your OT has never completed the form before or has any questions about the grants then they are very welcome to give us a call on 0808 802 6262 and we can go over it with them.

Best Wishes

Rachel

[JAY TEE]

Dugald hi I am bit like you had hip pain some years ago and finally formally diagnosed in May 2014. Mine is my left side mainly and now speech soliva bit worse. As for using the toilet suggest get in touch with OT (occupational therapist) . My local authority been great. I have raised toilet seat and they supplied a metal frame as well. This helps you push yourself up. They have also supplied a bathroom wheelchair. This has has toilet bucket underneath and remove it and be wheeled over the toilet as well if needed. You can learn a lot off the forum.
Jay Tee

[Bonzowoof]

Hi
Many thanks for the replies. I do have a frame round the toilet but even that is not enough now. Tell a lie, I could probably get up but my arms would be so weak from the effort that walking back to my chair could be a problem. I have fallen before now.
I will pursue the OT angle.
Dugald

[Dude]

Hi Dugald, one of my childhood friend's dad was Dugald, Scottish I believe . It sounds like you live alone so if that is the case you need to plan ahead not just cater for today but what will happen down the line. My advice is give up walking before you have to. Your next fall may break your hip. JT & Terry both mention having someone to assist them . A carer is the most precious bit of kit. Dude

[Bonzowoof]

Hi Dude
Don't worry, I don't live alone. My wife helps me. We have routines to get me where I need to be. The problem is that her back is not as good as it was so anything that can take the strain off her is good hence the hydraulic loo ejector seat.
Many thanks
Dugald
Ps Scottish Gaelic as suggested

[Dude]

Hi Dugald You seem to have arrived at a point where you require personal care. It is possible to have your wife push you over the toilet but she would need to obviously clean your bottom because cleaning yourself is not possible. From the toilet you can be pushed under the shower. You could stand up using the end of the bed and lower yourself onto the shower chair. Dude.

https://www.youtube.com/watch?v=-PS9VWZ1HkU

[Dude]

Dugald Have a look at this website. There a few things to helpl. Drop down rails for toilet , shower chairs & Bath lift. Dude

http://www.uksmobility.co.uk/bathing/bath-lifts/orca-bath-lift

[WendyWooG]

Dugald
If the problem is getting up from the toilet without hurting the wife's back I have seen uplift toilet seats where the seat itself helps you to rise? They were expensive though it's worth looking at Dudes site and seeing if they do one.

Wendy x

[Kernowcluck]

Hi. Dugald, I too have similar problems to you getting off the loo. I have the biggest raiser seat, in fact I'm almost on the ceiling and still struggle. This week I hope to install an extra high disabled toilet I think it's 520 cm plus a riser seat, for a bio bidet. You may find this useful as it gives you a wash and blow dry but sadly no turtle wax.

My biggest concern at the moment is managing to move in the bed. If I could manage to sit on the side of the bed I can stand up and take myself and my trolley to the toilet. I am going to try a hospital bed next week which will help me to sit up and maybe I will be able to get my legs over the side of the bed. Fingers crossed ,or should I say legs crossed, as this is all that stands between me and a catheter. I am now so paranoid about getting to the loo in the night that I know I am not drinking enough. I have been advised to wear a pad at night but it doesn't seem right to pee in the bed even with a pad on. I must say I'm sick to the back teeth of thinking and talking about toilets and all the basic things that most people don't have to think about.

[Terry]

Hi Kernowcluck;

I do agree that the thought is awful and being a man I have an advantage in that I use a bottle. Ask your OT for two high grab rails, Elland 0064 can be very helpful in moving in bed and getting on and off if he has a little hand/arm strength.

If moving in bed is a problem then also ask for two WendyLet base sheets, these are fitted with elasticated corners. They have silk middle area with grippy edges. I have had made a couple of silk squares about a meter square and I have that on top of the base sheet and it slides quite easily. You could also ask for a Monkey bar for the bed.

But get the grab rails on order for when the bed comes as they will make so much difference.

Love Terry

[Kernowcluck]

Thank you Terry. I hadn't heard of the slippery sheets, that sounds helpful. Monkey bars are no good for me as I have very little arm movement and all my shoulder muscles have gone. I get stuck in the bed and can't move up independently or roll to the left. I get in a right old pickle with the duvet and have come close to throttling myself many times which is a bit scarey. I also can't reach the bed lever but use it for steadying myself when I stand up.
Xx

[Ellie]

Hi Elaine,

Do you have a carer? Sorry for being blunt (it's my middle name ) but if you don't have one, maybe consider it??

I don't need to tell a Nurse that restricting fluid intake is bad... I get the not wanting to pee in the bed scenario too.

For me, having carers enables me to live as how I want to.

Ellie x.