Motorcycle enthusiasts Elaine Hawes and Fred Aspinall didn’t let coronavirus get in the way of love, even though it meant moving their big biker wedding to a smaller ceremony in their Midlothian garden.
Elaine, 53, who has been with Fred, 54, since 1982, was diagnosed with Motor Neurone Disease (MND) in November 2019 which turned her world upside down.
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.
Elaine, who is originally from Dunbar but now lives in Loanhead, 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.”
MND Scotland gave the couple a grant to help with the cost of the wedding and the honeymoon.
Elaine added: “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!”
Elaine first noticed something was wrong in February 2019, when she started experiencing flu-like symptoms and slurred speech.
She said: “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.
Elaine had to leave her job as a receptionist for a financial company after her diagnosis.
She explained: “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 to.
“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!”
Elaine was due to take part in an MND drugs trial, which was put on hold due to coronavirus, but she added: ““I will definitely be taking part as soon as I can.
“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.
“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 MND Action Week (15-21 June), click here.
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