Elaine, a motorcycle enthusiast, was diagnosed with Motor Neurone Disease (MND) in November 2019 and since then her world has been turned upside down - including her dream of a big biker wedding surrounded by friends and family.
Due to lockdown restrictions, the couple, who have been together since 1982, had to cancel their wedding plans but were determined to not let this stop them. Instead, Elaine and Fred organised a small (socially distanced) ceremony at home in a private garden.
Elaine said, “We were always going to have it on 16th May but we should have been married in the Tushie Inn followed by a reception at Honey Cottage caravan site – both places were chosen because we have a lot of friends in this area.
“Since being on lockdown, I have not been good. We are not people who sit about. We were always out and enjoying our caravan in the Scottish Borders and mixing with people. I need to be round people, and the wedding was something we were really looking forward to enjoying.
“However, due to my illness and lockdown we weren’t able to go ahead with our original plans. It took Fred over 37 years to propose, so I wasn’t going to let this stop us.”
Elaine, who is originally from Dunbar, continued “We ended up having the wedding at home in a private park. It was a great day and all the neighbours decorated the park up for us. Thank you to my great neighbours for making it a special day and for making us a wedding cake. My brother also made a lovely floral arrangement.
“MND Scotland gave us a grant to help with the costs of our wedding and honeymoon. We’re planning on going to a disability caravan in Yorkshire but need to save a bit more as it’s more expensive to cover all my needs. I don't know why holidays have to triple in price because of a disability - it is not right!
“We’ll also still have our wedding reception at the campsite when lockdown is over, along with the Edinburgh band ‘Big Fat Panda’ (one of our favourites) and plan to have a great time.”
Elaine first noticed something was wrong in February 2019, when she started experiencing flu-like symptoms and slurred speech. In November, Elaine was diagnosed with MND and has since been robbed of many of the things she loves to do.
“Life is changing very quickly for me and I have so much to do still. I think if I get any worse, well what is the point going on? I am not the same person I was. I am no longer able to ride my motorcycle, along with everything else I used to enjoy doing before MND. Things I will never get back. I was a very independent person and could always stand up for myself. I was very bubbly and outgoing, and loved life to the full.
“Last year I was all excited we had paid our house off and to celebrate I treated myself to a new motorcycle 650 Vulcan but then I got hit with this illness so had to sell the new motorcycle losing a lot of money. As well as motorbikes, I loved going to concerts, the theatre, nights out with the girls, dancing to live music and camping - I absolutely love the outdoors.
“I loved my job too. For 12 years I would get up at 5am every morning to go to my work as a receptionist for a Financial Company. I got to meet lots of people and communicate with clients from all over the country, and the world. I miss my job so much. Financially, leaving my job has been very stressful. The benefits system is really confusing and I think people with a terminal illness should get everything sorted automatically. Thankfully MND Scotland’s Welfare and Benefits Officer, Nicola Povey, was able to help get it sorted for me. That took a big weight off my shoulders.
“The most frustrating thing about it is my brain works well but I can't communicate the way I used too. I was always witty and loved banter, but this disease has taken over my body and no one can help me. I hate not being in control.
“My husband Fred has been doing a fantastic job with me. I had a lot I wanted to do with my husband and still had places to visit, but we will try to do what we can. It won't be the same but as long as I have Fred and Jake my Labrador with me.
“The most important thing for me now is spending as much time as possible with Fred, my brothers and my friends. I always need my friends around me, so hurry up with this lockdown - you are stopping me enjoying what we have left!
“The only way we are going to beat MND is to raise money for more research and get the drug trial up and running again soon. I had real hope in the drug trial but because of coronavirus it has been put on hold. I will definitely be taking part as soon as I can. We also need to raise much more awareness of the disease nationally and that’s why I am sharing my story today – to ask all of you reading to make a donation and help us find a cure!”
Craig Stockton, MND Scotland’s Chief Executive, said “On behalf of the whole team at MND Scotland I’d like to pass on my congratulations to Elaine and Fred. I’m very glad our grant has contributed to their special day and hope it’s not long before they can celebrate in the way they wished.
“For people living with MND, time with loved ones is precious. Social-isolation measures, while essential, are placing huge restrictions on the care and support many rely on every single day. Even basic companionship, like having a friend or loved one pop round to say hello.
“That’s why we launched our new services hub, to help us stay connected to families in Scotland, so no one has to go through MND alone. ‘MND Scotland Connected’ at its core provides one-to-one phone support, video support groups and emergency financial grants. People with MND need us more than ever, so if you’d like to help support people affected by MND during this worrying time, you can donate here.”