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Sunday

 

Anita Cunningham talks about her brave husband Tony and how he is coping with primary progressive MS

























Anita Cunningham, from Billericay, was a childhood carer for her mum Linda, who had a rare form of multiple sclerosis.

Her mum sadly passed away at the age of 49 and Anita, now 41, thought she had put her past behind her.

Devastatingly, her husband, Tony, was diagnosed with primary progressive MS, the same degenerative condition as Linda, last year.

Tony’s brother Gary is aiming to raise £4,000 by doing a gruelling 200km cycle ride in June around south and north Essex to raise money for Tony to have stem cell treatment in Russia next year.

To donate, visit gofundme.com/tonyc Here, Anita talks to LOUISE HOWESON about the pain of seeing two loved ones affected by this rare disease.

Anita says: "Coming to terms with the fact my husband has the same disease that took my mum has been a hard journey for the last 14 months.

Seeing someone you love deteriorate is not easy, especially when you have been through it all before.

I was 11 when I started to care for my mum. She was diagnosed with primary progressive MS at 33 and within five years she was in a wheelchair.

My dad worked nights, so I would need to care for her and get her to bed each evening.

At that time I didn’t have any hoists to help lift her, so I would have to get behind her and lift her by the armpits and basically drag her up the stairs. It must have been so hard for her to see her little girl have to do this.

I didn’t really tell anyone what was happening at home. I just wanted to switch off when I was with my friends.

I met Tony when I was 13, at Greensward School in Hockley. There was instant chemistry.

We had the exact same sense of humour and were the practical jokers of the group.

I loved being with him and he helped me through those times without really knowing about it.

My mum died at 49 and the whole experience changed me as a person. It made me value every minute and the people around me.

Me and Tony lost touch after school, but we reconnected later in life, fell in love and have been together ever since.

We still share that same sense of humour and have never stopped having fun together.

He worked as a chef and was very talented and we have been very happy together.

Then he started to trip over his feet when he was walking.

Initially he thought it was just him being clumsy, but it started to get worse, so he went to the GP and they immediately referred him to a neurologist.

He was diagnosed with primary progressive MS, a rare form of the disease which affects just 10-15 per cent of people with MS.

I was in shock that Tony had the same disease my mumhad and that I was going to go through the same thing again.

It was a shock and then there was the realisation that our hopes and dreams might be in jeopardy.

The reason I have remained strong and positive has been because of Tony. It is hard to be upset all of the time when you are living with someone who is so positive and happy.

I’ve never once heard him say “whyme?”, he just accepts the situation and makes the best of it.

I do worry about whether I am strong enough to go through all that again. But I know I will be strong enough and we will always be together.

We still laugh together – he has such a wicked sense of humour and a big heart.

I knowTony worries about me not living out my dreams and I worry about him. We worry about each other and support each other – that’s how we cope.

It must be hard for him to be 41 and have to have his dinner cut up for him and to struggle to walk to the shops, but he never complains.

There is no treatment for primary progressive MS available in the UK, but we hope there is light at the end of the tunnel in the form of hematopoietic stem cell transplant.

Tony is on the waiting list to have the treatment at the National Pirogov Medical Surgical Centre in Moscow. It will cost £40,000 and we are currently raising funds to get him there.

He will fly out to Russia to have the treatment in October 2016. All of our focus is now on the treatment now. I wish I could fall asleep and wake up and it be October and Tony was going in for his treatment.

We have been overwhelmed by the support of people. One little boy saved up all his pennies and donated them to the charity, and a lady at Christmas time got in touch to say she was a single mum and didn’t have a lot to give, but she had heard about Tony and wanted to donate £5.

We decided to tie the knot in Australia last year. Tony had paid for a holiday before his diagnosis and then one of my friends in Australia suggested we get married while we were there. She organises weddings and she helped plan everything and all the people involved donated their time for free.

We got married on a beach in Queensland. It was the most magical day. It was amazing to see him walking along the beach on our wedding day. One day he might not be able to do that, but we cherish the moments. When you are looking after someone, you become even closer, I think.

I see him when he is at his most tired and when his symptoms are at their worst.

We will visit friends for dinner and they will see him and think he can walk OK, but compared to 14 months ago I can see his symptoms have got worse.

He was an excellent chef and it was a job he loved, but he has accepted he had to stop working. It must be hard to go from being an active man to being at home most of the time.

Not that you would ever hear Tony complain. The way he has dealt with his diagnosis has been amazing and he is true inspiration to me and the people who know him.”

Story Source: The above story is based on materials provided by ECHO
Note: Materials may be edited for content and length
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