Former painter and chef Susan shares her diagnosis with MND

When Susan Blackett (74) from Kirkbean, near Dumfries, began having problems with her speech last year, she believed it may have been down to the potent turpentine fumes from her beloved hobby of oil painting.

Little did she know, just a few months later, her life would be turned upside down with her diagnosis of Motor Neurone Disease (MND).

MND is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. This may cause someone to lose the ability to walk, talk, eat, drink or breathe unaided.

Susan, originally from Oxfordshire, is a former professional cook of Le Cordon Bleu – one of the world’s most famous culinary arts, wine and management schools.

She studied at the prestigious cookery school for two years, before going on to set up her own professional catering company. It was here in 1974 that she met John, who owned a business of his own, specialising in the sale of raw fish, game and poultry. They married three years later in 1977.

John (79) was born to a land owning family on the Nether Mill Estate, near Kirkbean in Dumfries and Galloway, where the couple decided to relocate 20 years ago to enjoy their retirement. Today they live in a remote countryside home with their cairn terrier, named Bousach.

The couple are parents to two daughters, Flora (40) and Letty (36), both of whom live in Oxfordshire with their husbands and share their mother’s talent for oil painting.

Retirement gave Susan a chance to pursue her other creative pastimes, including tapestry, knitting and oil painting.

It was in May 2017, after an intensive period of painting, that Susan first noticed that something was wrong.

Susan said: “I first noticed that there wasn’t something right with my speech in 2017. A chap from Edinburgh was brought down by a friend of ours and was thrilled by my still life paintings, and wanted to hold an exhibition for me in Edinburgh, with a view to selling my works. He had previously worked for Christie’s – the fine art auctioneers and exhibitors.

“He asked me to run up 40 pictures, so I set out about it in my loft, which has no ventilation. I worked very hard on my paintings and afterwards John and I decided to visit our holiday home in Portugal with some friends. It was here that we noticed that I had begun slurring some of my words.

“My daughter, Flora, is also a passionate and talented oil painter. She occasionally has chest and throat trouble caused by turpentine used in her oil paintings, so we immediately traced the problem back to painting in my loft just before the trip and thought nothing more of it at the time.

“I went to the GP shortly after coming back from Portugal in May 2017. I was originally seeing the GP about something else, but while I was there I happened to say that I was fed up with this damn voice, which hadn’t improved.

“He said he should investigate further, so I was referred on to specialists for an extensive series of tests. As a result of the tests, I was told that Motor Neurone Disease might be one possible reason for my speech problems.

“When I told the girls, Flora wanted me to go south and get a second opinion from a private doctor at our own expense. I visited Flora, who was staying in London in the summer of 2017, and it cost a fortune. I went to see all kinds of neurologists and they said it wasn’t MND, but that they didn’t know what it was. They suspected that I might have suffered a series of small strokes.

“During the same time, I had a very good friend in Bath who had been living with MND. We went to see her in March 2018 and she passed away just two months later in May 2018. At the time, I was still having my own speech problems, but she couldn’t talk at all.

“I went for a final round of NHS consultants and neurologists in Edinburgh and Dumfries, in the autumn of 2018, and they confirmed my diagnosis as MND. I was absolutely horrified.

“At the moment, my condition is only affecting my speech, which is incredibly frustrating because I used to be very social, enjoying days out to visit friends. Now, when I see a friend I’ve not seen in a while, they are shocked.

“In the buzz of conversation, in a dining room for example, even a person sitting next to me can struggle to hear what I’m saying.”

How that her diagnosis is clear, Susan and John are still on the fence whether to give up their beloved countryside home, to move closer to family.

Susan said: “The girls are very keen for us to move south because it’s very difficult for them to see us up here. We have lots of family and friends and a rather big support network down south, so we are still weighing up a move to be closer to our family.”

During the time since her diagnosis, Susan is deeply grateful for all of the help and support offered from MND Scotland and the NHS.

“We’ve visited the MND Scotland support group in Dumfries, which we have found very useful. We have also been helped with a Time Out Grant from MND Scotland, which has helped us pay for a holiday to Madeira later in the year.

“We’ve had nothing but excellent support from everyone we’ve dealt with. I know that a lot of people have lots of mobility issues very quickly after they are diagnosed, so in a way I feel lucky that, at least for the time being, it’s only my speech which has been affected in a significant way.”

If you would like to share your story with MND, please contact communications@mndscotland.org.uk.