68-year-old Rob Smitten shares his story on Global MND Awareness Day, to support our fundraising appeal to build the Rob Burrow Centre for Motor Neurone Disease.

68-year-old Rob Smitten, from Wakefield is sharing his story on Global MND Awareness Day, to support Leeds Hospitals Charity’s fundraising appeal to build the Rob Burrow Centre for Motor Neurone Disease. 

Rob had been experiencing symptoms for around a year, starting with a sensation in his hand and progressing to pain in his neck and thought it was something minor that could be sorted within in a few months.

Read more: Donate to the Rob Burrow Centre for Motor Neurone Disease Appeal Today

So, in June 2022, when Rob was told the devastating news that he has MND, he remembers feeling like he was being struck by a bolt of lightning:

“I was in total shock for a couple of weeks, it was completely unexpected. So many questions go through your head, why me? What will happen next? What do we do now? Is this the end? I had been easing myself into retirement and was looking forward to holidays and picking up new hobbies, and I thought everything had to change.”

Once the reality of his diagnosis had sunk in, Rob recalls the moment he woke up one morning and decided to start focusing on what is important in his life.

Just before he was diagnosed, Rob had settled into a new home with his wife Karen and the pair were looking forward to enjoying their retirement. Rob has always been active and was a keen cyclist, golfer, and walker. He has had to slow down but has a positive outlook, focusing on what he can do now and not dwelling on what he can no longer do because of his condition.

Read more: 7 Stories of MND

Rob’s positive outlook has even enabled him to pick up new hobbies he’s never done before, opening up opportunities he never expected. 18 months ago, Rob began drumming lessons and now has his own kit at home, something which he would probably have never done if he hadn’t been diagnosed.

Rob on holiday in Rome

Rob’s ethos in life to ‘live in the now’ echoes that of Dr Agam Jung’s vision for the Rob Burrow Centre for Motor Neurone Disease, he told us:

“The past couple of years have been difficult, especially when I was first diagnosed, but I am determined not to let MND rule my life. MND is a part of my life that I can’t escape, but my goal is to make sure I am in control of my life for as long as possible, so I can live life to the fullest.”

Over the past two years, Rob’s decline has been gradual, but he is now noticing the weakness in his right hand and legs, and has just got his first wheelchair.

Read more: Our Tribute to Rob Burrow CBE

Rob is under the care of Dr Agam Jung and the MND clinical team at Seacroft Hospital. We spoke to him about his experience at the current centre and the difference a bespoke building will make to patients like him:

“When I first went to Seacroft it felt as if as MND patients we were pushed at the back of the hospital, it’s bleak, not very accessible and through long corridors. Dr Jung and team are amazing, they are so dedicated, warm, and understanding, and they deserve a better environment where they can provide us with the best possible care.”

Rob has been part of the stakeholder engagement sessions held by architects Corstorphine & Wright, where staff, patients and family members have been involved to shape a centre tailored to their needs. Rob said:

“We were involved right from the start, and have had an insight as the plans for the building have evolved and our opinions have been valued as part of this process. I’m optimistic that the centre will be able to support the specific needs of patients, as MND affects everyone differently. The new building will be a huge morale booster, all of the facilities have been designed with patients and staff in mind, it will make it a more positive experience in a world-class facility.”