Introducing Me!!!!

[Aalistoun]

Hi All. My name is Ashleigh and I have recently been diagnosed with MND, last month actually. I experienced symptoms first in June last year and it first affected my hand and I noticed when I tried to open pegs to hang washing on the line, I noticed that I could not open the pegs. I contacted the GP and was referred to 111 who sent an ambulance as they thought I was having a stroke. I was given the all clear and told it was a nerve in my neck. The GP saw me the next day and diagnosed Carpel tunnel syndrome. She sent me for Physio as no Orthopaedic surgeons were seeing people due to CODIV. The physio gave me exercises and when she saw the muscle wastage in my hand, she referred me back to the GP. Eventually the GP saw me, and I was told that I urgently need to see someone. I waited a while through the NHS and went private. I saw a neurologist who diagnosed me almost straight away he asked questions and I answered yes to most of them. I knew he knew what was wrong with me. He said he had to do tests first. I went for an EMG, nerve conduction and MRI and my diagnosis was confirmed. I am 48 years old, married with a 5 and 6-year-old children. We are currently on a Visa so we do not get access to public funds and I am praying that I last 5 years to get access to the funding and my wife and kids will have some security. I am also hoping that I can work till the end so I can provide for them. My current symthoms are that I walk slowly, the my thumb on my right hand is weak, I slur and that I have excess silvia.

[Mary C]

Hi Ashleigh,Welcome to this forum.I do hope you will be /or are linked to a team of health professionals who can advise and offer support to you all.Finances are a concern and not sure what being on a visa entails.( presumably you might not to be able to apply for DWP benefits.It might be worth you contacting the MND association to talk through your situation.Then can offer all sorts of support including signposting you and your wife for other support.They do a range of publications for children when and if you deem that might be useful.There are grant applications,volunteers and a listening ear.Wishing you all the best and ask any questions on this forum as the members have a wealth of experience of various symptoms but also on suggestions of strategies,equipment that makes live easier.
Best wishes.Mary

[slp]

Hi Ashleigh

Welcome to the forum x

I am sorry that you have been diagnosed and funnily enough my Mnd started with my thumb too. That was in 2010 so don't give up hope.

Ask any questions and you will find someone has an answer

take care x Sarah xx

[SueM]

Hi Ashleigh welcome to the forum. I was diagnosed with PMA type of MND last September, Covid delaying my diagnosis. If you are here on a visa can you access NHS services? As Mary has already said the MND association is a good source of information as is this forum.
Take care, best wishes Sue

[Bowler]

Hello Ashleigh a warm welcome from me. As you can see you’ve already had some good suggestions which is what this forum is great at doing

[Gordan1111]

Hello Ashleigh. Sorry you find yourself on here. Get all the help and advice and support and knowledge you can.
xx

[Ellie]

Hi Ashleigh and a warm welcome to the forum.

It is a hard diagnosis to get your head around, that's for sure, especially when there are young children involved.

I don't really understand what you mean by getting access to public funds - is that benefits?

Did you ever get, or go to, the NHS appointment ?

Love Ellie.

[Aalistoun]

Hi Mary

Thank you for your response, the association has been amazing and has assisted us greatly. We have spoken to them about the benefits and unfortunetly we cannot claim. They have assisted us with child support and assisted my wife as well. I cannot praise the MNDAssociation enough!!!!!!

Thanks

Ashleigh

[Suefromwakey]

Ashleigh it is indeed a pity you have had to find this site, I can only sympathise with you, not only is this dreadful disease to contend with but you have young children too, there are others on here with children who no doubt will give you plenty of tips.........you only have to ask,

There are no set symptoms with this thing, literally everyone is different, I am my husbands carer, I know he's had this for 4 years, but only diagnosed in January 2021 after seeing consultants for just about 2 years, in my mind you have had a really quick diagnosis and your consultant is brill. its such a difficult thing to diagnose, seriously is

You will have a lot of decisions to make especially around the children, best wishes to you

Sue

[Aalistoun]

Hi Ellie

Yes I am talking about benefits as my wife is very worried about money at the moment.

I have my first appointment at an MND clinic next month and I can't wait!!!!

Thanks

Ashleigh

[Aalistoun]

Hi Sarah

Thanks for your kind words and with this who knows where I will be in 5 years - it is anyone's guess.

Thanks

Ashleigh

[Aalistoun]

Hi Sue

Yes I was verey lucky with my consultant and very lucky I caught it so soon.

I spoke to the school and they say that the kids can only see 2 weeks at a time. So I have told them I am sick and doctors are trying to help me.

Thanks

Ashleigh

[Aalistoun]

Hi Gordaan1111 thanks and as I have said the MND Association have been amazing!!!!

[Aalistoun]

Hi Sue

Yes thankfully I can claim NHS benefits and I have been assisted greatly.

[Lynne K]

Hi Ashleigh and welcome to our forums. I’m sorry that you find yourself in this situation. Good luck for your MND Clinic appointment. I sure hope that you find a source of financial support for when the the comes that your current job is not doable. When you feel able to search these forums it’d be good to look for voice banking. That’s having your voice digital saved for using on a compatible device to communicate if your voice fails. Seeing as you are slurring already, time is is of the essence. Take care, love Lynne x