Southend: Garry Lowen on his fight with Motor Neurone Disease

After receiving a devastating diagnosis of Motor Neurone Disease, Southend businessman Garry Lowen is determined to make the most of the time he has left.

The 63-year-old, who owns the Gleneagles Guest House in Clifftown Parade, along with his wife Penny, 61, has spent his life serving Southend.

Last April, he was diagnosed with MND - a disease which affects the nerves in the brain and spinal chord. It can affect how sufferers walk, talk, eat, drink and breathe.

Now, after his diagnosis, the Southend community is giving back to Garry - and he says he is overwhelmed by the support he’s received.

Garry always jokes that Southend runs through him like a stick of rock.

He grew up in Southend, has run businesses here and has spent years acting as a fierce advocate for the city.

In January, he became one of the select few to receive Southend’s highest honour – the Freedom of the Borough.

Garry receiving his 'freedom of the borough' award

The award was for his work with charities and community groups, including the Southend Carnival Association and the Rotarians.

Although MND - the same disease that Stephen Hawking had - is slowing him down, Garry is as passionate about Southend as ever.

“It’s a bit of a bugger really but I just have to roll with it and adapt, change and cope with the symptoms as best I can - of which they aren’t the most pleasant,” said Garry.

Garry is realistic about his condition. He wants to raise as much awareness about MND while he still can.

“I think in my heart of hearts I have the more aggressive version,” he admitted. “I’m not sure how long I can keep going because of the speed at which it’s taken me over.

“Up until Christmas the phrase I kept saying was that I was in charge. Since Christmas it’s been in charge of me.”

Garry’s mobility has now deteriorated and he relies on an electric wheelchair, the help of carers and Penny’s round-the-clock support.

Penny added: “The scariest thing is that it affects everybody differently and you never know what’s in store.

"One day Garry can do something the next day he can’t.”

Voice technology to help Garry to communicate

Garry and Penny are aware his voice could be the next thing to go - but they have a plan should the time come.

“We have been voice banking,” said Penny. “It’s one of the first things we did after Garry was diagnosed because it’s so important- after all communication is Garry.”

Garry took part in a trial with the Motor Neurone Disease Association which records and “banks” MND patient’s voices as they read a story aloud.

The recording is uploaded and transformed into a synthetic digital voice which can be used to communicate, similar to Stephen Hawking’s famous voice generator.

“It’s amazing technology and reassuring to know that I will have a device with my own voice to communicate with when I can no longer speak,” said Garry.

When it comes to Southend - Garry’s heart and home - he has always dreamed big. Those dreams remain, despite his illness.

“We have to be radical,” he said. “We need a marina at Shoebury. We need to encourage businesses to have their base here. I want our councillors to make real use of the city status in a proper way, for economic development.

“I’d also like to see the introduction of light rail and trams in Southend. If you go to any European city you’ll see trams.”

Garry remembers Sir David Amess

Garry and Penny were friends with Sir David Amess and were devastated when the MP was stabbed to death last October.

Conservative politician Ann Widdecombe stayed at Gleneagles with the couple before she read out a family statement at Sir David’s funeral in Prittlewell.

Garry and Penny also travelled up to London for his parliamentary funeral service at Westminster Cathedral.

“In a strange way the Westminster service was very uplifting,” said Garry, who still gets tearful when talking about his friend.

“What struck me was the cross party support that David had and the fact there was a Labour and a Conservative MP reading out prayers. That was David. It was about bringing people together regardless of their views.

“David was a great friend. He came to see me as soon as I was diagnosed. He spoke in the House of Commons about MND and campaigned for more money for research. Even the day before he died, he was working to get my outside lift installed quicker.”

Garry first showed signs of MND when he suddenly dropped a saucepan in the kitchen.

“Normally you sort of know when you’re going to drop something, but I didn’t,” he said.

“Then I went out and as I was walking down the road I was having to consciously put my left leg down. I thought ‘oh they are old rugby injuries’ as I played rugby until I was 40”.

It soon became clear Garry’s condition was far more serious than he had imagined.

“At first they thought he’d had a stroke,” said Penny, who cares for Garry as well as running the guest house and working for an interior design company.

“So we had all the tests and then a doctor said he suspected MND.”

Garry recalled: “I’d heard of it, I knew it was incurable and you just can’t tell how it’s going to affect you.”

'I'm so grateful to the community'

Until Christmas Garry was able to shuffle with a walker but then he kept falling over. Friends in the community were swift to step in. They formed a WhatsApp group where Penny could post a message if she needed help with Garry.

“I’m really very touched about what they did for me. It was actually wonderful. They’d carry me up the steps and get me indoors,” said Garry.

He and Penny are also indebted to Fair Havens Hospice. Garry has been visiting the hospice regularly and particularly enjoys the gardening club.

With the help of members of Thorpe Bay Rotary Club, the hospice gardens have been transformed with a dozen raised planters and gardening equipment.

Read more >> Plan to turn Gleneagles guesthouse into flats

“The Rotary club all piled in to help me as I wanted to make the gardening club better for everyone at the hospice,” said Garry.

“The thing about the hospice is people think it’s all about dying but it’s not. It’s about them giving you the encouragement and the support to live. When I first went to them I had nothing left in my emotional tank. I wouldn’t be here now without them. At the end of the day Penny and I have had a blast and I have so much to be grateful for.

“I’ve always worked to give to the community. Now they are giving to me. I can’t describe the extent of my gratitude. “