Help when losing use of hands

[Catsparkle]

Hi, I'm upper limb onset. My left hand I can just about open and close but nothing else, My left shoulder is at 50% and I've lost pincer grip and strength in my right hand. Its started to get tiring using my right hand to eat.

I live alone with my ten year old daughter who helps me unload the dishwasher, undress etc but I need more help all around the house (binbags, bedding etc) than I can rely on a ten year old for! She's also dealing with my disability and terminal illness.
Im 45, so cant get attendance allowance, or can I? What help do I get as my hands fail? I can still toilet independently.
My legs are spastic but not that weak yet and my balance, swallow, breathing is okay.
I've put on do much weight that i cant safely get down to get something and get back up. I can't lift anything more than a light tea tray.
I'm not being a crybaby, obviously I'm devastated by losing my hands and independence, but I'm a year in and luckier than many x I appreciate what i have too. Wish i hadn't put on the weight though! I have permission to lose a little if it makes me happy, and that will aid mobility. I could lose 3 stone when eating gets hard and still be overweight then.

[Lynne K]

Catsparkle, I've put about 4kg on too. Not happy with that but my neurologist is. I'm losing strength in my hands. The right one started just before diagnosed around summer 2017 but left started about 6 months ago. I'm worried about that but try not to focus on it. You ought to have carers to help you and take the strain off your 10 year old. Lynne

[Catsparkle]

I've put on at least 3 stone! I do need carers now i think, my mum is already doing a lot and will have my daughter as i become more disabled too.

[Kayleigh]

Hi Catsparkle,

I hope you and your daughter had a lovely Christmas.

You have both got a lot to cope with and it sounds like your daughter is a real angel for all the wonderful help and support she gives you. I expect you are very proud of her - and you should definitely be proud of yourself as well for raising such a kind and thoughtful young lady!

I realise that you have posted your enquiries to the MND Connect team and I do not want to tread on their toes - but as it is a bank holiday today and so they probably won't be able to reply until tomorrow, I just wanted to offer you some advice that may be useful in the meantime.

You are correct in thinking that you do not qualify for Attendance Allowance (as you need to be at least 65 years old to claim). If you havn't done so already, you should be able to make a claim for PIP. I have read on this website, that the MNDA have benefits advisers who you can talk to in case there are any other benefits that you may be entitled to.

Understandably, you are ready to look into what your statutory rights are concerning carers. You are entitled to an assessment by your local authority concerning your care needs. From reading the info on the MNDA website, it looks like you need to contact your local authority's Adult Social Services about the 'needs assessment'. I have provided a link to the MNDAs info about this:-

https://www.mndassociation.org/about-mnd/what-help-is-available/having-your-needs-assessed/

Best wishes
Kayleigh x

P.S. I always get the impression from the medical professionals that it is much more concernng if we lose weight rather than putting it on - so keep tucking into those Christmas chocs girls!

[Catsparkle]

Thankyou so much Kayleigh x I have full PIP at upper rates and ESA contribution based. I'll check out that link, thankyou xx I'm putting the chocolates away, if i put any more on my legs will give way! ��

[Kayleigh]

Hi again Catsparkle,

As yet, I don't have any experience of what a 'needs assessment' involves and so I am not able to pass any tips/advice onto you.

However, it might be well worth you contacting your Regional Care Development Adviser because that person will have valuable knowledge about how the provision of social care works in your Region (and will also be a very friendly person to have a chat to for support and advice).

In case you need it, I have posted a link to the list of the MNDAs RCDAs below:-

http://www.mndassociation.org/getting-support/mnd-regional-care-development-advisers/

Kayleigh x

[Deb]

Hi Catsparkle,

It sounds like you have such a lot to cope with atm ...your young daughter sounds like a credit to you so you should feel very proud. I think emotions are always heightened at Christmas, New year , birthdays etc. You sound like a very brave lady to appreciate what you have and not what you've lost. Sometimes, however that's just not possible and I am sure we all have a meltdown occasionally.

I hope you have practical support from your local MND team. I had the nurse ,physio and OT round to assess our needs within days of being diagnosed and I have a help number for when my needs change. I also spoke to a benefits advisor from the MNDA and I was offered counselling.

Sorry to have hijacked a MND connect thread but I just wanted you to feel there is help out there and you're not alone.

Take Care
Love Debbie x

[Catsparkle]

Thankyou xx I've emailed our local mnda co-ordinator and updated the hospital team. I had OT and physio assessment on diagnosis but didn't need much help at the time. I just need to get the help in before my last hand goes. I'm lucky in that i can still use my left arm, and move my whole left hand if not the fingers. I'm an artist, so its hard! Its hard anyway though isn't it. I've had help from the m n da benefits line and haven't found it great tbh, the chap wants to be helpful but isn't really. But my local council officers have been great. I'm seeing my doctor this week, so I'll ask her too. Thankyou xxxx

[MNDConnect]

Hi Catsparkle

It does sound as though an up to date occupational therapy assessment would be useful for you. It's something that the OT should be doing at regular intervals to keep up with any changes in your needs. There are various pieces of equipment that the OT might be able to provide that can help you with tasks around the house. If they identify something that would be useful for you but they can't provide it, they can approach the MND Association to request funding.

Best Wishes
Rachel
MND Connect Adviser

[Kayleigh]

Hi Catsparkle,

I was interested to read the MNDA's reply to you, which mentioned that we should be regularly reviewed by our OTs. I have been told by my physio and OT that they do not automatically organise regular reviews with me and it is left to me to contact them for advice or if I want them to visit me. This may be the same situation for you, and so it is great that you have already been pro-active in contacting yours for a review.

I have weakness in my legs and, at the moment, my hands are not too badly affected. I can use a standard rollator indoors but I was wondering whether the brakes on it would be get too difficult for me to use if/when one or both of my hands become much weaker. I think that most rollators have two handles with a brake on each, but I have found a 4 wheeled 'Tuni Nova' rollator which is easier to use with weaker hands (it has a bar instead of handles and it only needs one hand to apply the brakes) - It also includes a useful basket and tray. I just thought I would let you know about it in case you thought that it might be useful/suitable for you - and it might be something (or something similar) that your OT or physio could provide for you.

Just in case you are interested, I have provided a link to the 'Tuni Nova' on the Careco website:-

https://www.careco.co.uk/item-p-wa01063/tuni-nova-indoor/

Best wishes
Kayleigh x

[Barry52]

I posted on a previous thread that the trolley provided by my OT was unsafe because it lacked brakes. I have been informed that they have ordered one with brakes which may be of interest to others.

https://www.careco.co.uk/item-p-dl06108/deluxe-height-adjustable-trolley/

Barry

[Kayleigh]

Hi Barry. That's great news about your OT ordering you a trolley with brakes. Hopefully, you will be pleased with it and it will look as good as it does in the picture! Best wishes, Kayleigh.

[Catsparkle]

Hi everyone, thankyou for the advice. My GP was as always amazing as was the MNDA co=ordinator. I need to self-refer to adult social care, and my Doctor has written to my council housing dept to ensure they know I'll be housebound unless I'm moved. Fingers crossed!
Lisa x

[Kayleigh]

Hi Lisa,

Hopefully, the new housing will get sorted quickly for you.

I would have thought that the council have got some sort of legal obligation to provide you with a property that has 'disabled' access, but I suppose it depends on how quickly a suitable property becomes available. At least the letter from your GP will help and, hopefully, you won't have to wait long before you move to a more suitable home.

Kayleigh x

P.S. I am glad that you have found your RCDA so helpful - they seem to be such lovely people!

[Catsparkle]

Yes, hopefully something comes up soon Kayleigh.. I got myself on high priority urgent status for a 2 bed bungalow in my area, but looking at the previous lettings only 2 or 3 come up a year. It's been 3 or 4 months now, so fingers crossed! Thankyou for the link to the rollator, the bar ones are hard to find.
Lisa x