Susan worked as a Help Desk Co-ordinator at a facility management company in the oil industry, but was on long term sick leave when she was diagnosed with 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 said, “I had been experiencing sudden falls since 2014, so my GP said I needed to be investigated. After another attack in April 2017 I was seen by a specialist the following June.
“I had MRI scans on my spine and brain. I was seen in a clinic mid-September 2017 and admitted to hospital two weeks after my appointment; I was given my diagnosis within six days whilst I was still in hospital.
“I had heard of MND but I had no idea what the symptoms were or how it affected people. I still can’t believe it has happened to me.”
Since her diagnosis Susan’s symptoms have progressed, “My arms and hands are very weak and I can’t lift them anymore. My left hand and shoulder has a lot of muscle wastage and it’s now affecting my legs. I have trouble getting up or getting out of the car.
“I still can’t take it in and my mum is finding it really hard to accept. It’s difficult to accept that I can no longer do the things I could. Even normal and simple things like getting dressed, taking things from a cupboard or hanging my clothes up.”
Susan went onto praise her MND Clinical Specialist and charity MND Scotland, “My MND specialist, Dianne Fraser, is very helpful. It is good to have local support and someone who will listen to how I am feeling; she’s a great backup. I have also received a grant from MND Scotland to pay for taxis’. This helps me get around and stay more independent, which is really important to me.”
MND Scotland provides grants which can help alleviate some of the financial burdens which come with a diagnosis of MND, for example; home adaptations, utility bills, or even a holiday to get some time out. The charity also provides other vital services such as local support groups, counselling and welfare and benefits advice.
Craig Stockton, MND Scotland CEO, said “I’d like to thank Susan for bravely sharing her story. By raising awareness with the public we can make sure everyone knows what MND is and its devastating effects on families. MND Scotland is here to support everyone affected by MND in Scotland and fund vital research into a cure. If you need support or advice, or would like to get involved, please get in touch.”
To find out more about how MND Scotland can support you and your family visit our support pages.