Vicky Rennard spoke as the final plans are being put in place to host the Burrow Strictly Ball this Saturday .
Vicky, 39, from Swinnow, was diagnosed with MND in March 2020, just as the UK went into the first Covid lockdown.
She said: "It started off with me feeling weakness in my legs and twitching in my eye.
"I went through all the tests and it it took about four or five months to get the proper diagnosis and I have been going downhill since then."
Vicky said she is no longer able to walk, has lost mobility in her left hand and has begun to develop breathing problems.
The mum-of-three said she had to give up her job as a cleaner after receiving the diagnosis and her partner of 14 years, Peter Senior, has given up his job in the demolition industry to be her full time carer.
Vicky said she also receives regular help and support from her parents as well as her children Chloe, 23, Leah, 19 and Alfie, 11.
Describing the impact of the condition on her family, she said: "It has been a lot of hard work. My parents are struggling with it as I am their only child.
"It has impacted Peter the most because he has had to give up work. It's affected our financial situation and it has been devastating for my children.
"We try not to talk about it too much but we all here for each other."
Vicky said the new centre would be a highly valuable asset for all MND sufferers and their loved ones.
She said: "The centre would be great because my family members would be able to attend appointments with me so they will fully understand what is happening.
"At the moment it is a struggle and quite upsetting to go to appointments on my own and then have to explain things again afterwards."
Vicky said she is currently receiving excellent support from her occupational therapist and is awaiting a stairlift being fitted in her home.
She continued: "At the moment we are managing as best as we can.
"I know what is going to happen eventually but we are trying to be positive and block it out as much as possible and enjoy life.
"It is hard but you try to plod on.
"After two years I still don't think it has properly sunk in. I'm not sure it ever will.
"You keep hoping for a miracle or to be told there has been a misdiagnosis.
"I still think I'm lucky in some ways as I still have my voice so I can still shout at everyone!"
Describing the moment she was told about her diagnosis, Vicky said: " It couldn't have happened at a worse time really.
"Everyone had just gone into lockdown. I was told on a video call because I could not meet with the doctors in person.
"I then had to wait about six months before I could see a specialist. But that was how it was. It was pretty much the same for everyone else."
Vicky also spoke of her admiration for Rob Burrow and his mission to help others since his diagnosis.
She said: "He has been so good.
"I can't believe how positive about it all he has been. I don't know how he does it to be fair. He's always got a smile on his face."
Vicky's family are also planning their own fundraising efforts to raise money for the new centre.
Peter and his friends are in the process of organising a sponsored walk from Castleford Tigers' ground to Headingley Stadium on September 5.
Joanne Hartshorne and Claire Burnett, older sisters of former Leeds Rhinos player Rob Burrow, have been planning the dance event as the family's way of joining the fundraising campaign since shortly after their brother's Motor Neurone Disease diagnosis in December 2019.
With their dance contacts and Rob's celebrity and sport contacts, they have come up with a star-studded line up for the night which will feature a dinner, raffle and auction and of course, the dancing.
Celebrities and sporting stars taking part include the former Leeds United and Sheffield United footballer Brian Deane, former Rhinos players Barrie McDermott and Iestyn Harris, paralympian Ian Marsden, actresses Adele Silva and Natalie Anderson, BBC journalists and tv presenters Sally Nugent and Luxmy Gopal, Line of Duty and Peaky Blinders actor Nigel Boyle, TV doctor Amir Khan and MP for Normanton, Pontefract and Castleford, Yvette Cooper.
There is a celebrity panel of judges signed up featuring BBC Breakfast presenter Dan Walker and his Strictly partner, Nadiya Bychkova, fellow Strictly contestant and Emmerdale star Kelvin Fletcher and comedian Jon Richardson.
BBC Look North’s Tanya Arnold and TV presenter Helen Skelton will be the evening's comperes.
The sisters hope that they can raise £100,000 towards the £5m needed for the bespoke centre which will see all MND services housed under one roof for the first time.
Patients will have access to a range of holistic support tailored to their needs, from speech and language therapy, to diet and nutrition advice, and physiotherapy.