AN Edinburgh mum diagnosed with a terminal degenerative illness less than a month before her daughter’s first birthday has shared her heartbreaking battle with the condition.
Ruth Williamson spoke of her “shock” when doctors told her she had motor neurone disease (MND) in November 2017 – just 11 months after giving birth to daughter Anna.
The illness stops signals from the brain reaching the muscles, causing sufferers to lose the ability to walk, talk, eat, drink or breathe unaided.
Outdoors enthusiast Ruth, 36, who lives in the Trinity area of the city with husband Scott, 33, said she began noticing the early effects of the disease up to five months before her diagnosis, adding she had “shed so many tears” over the future.
But she is now hoping to encourage others to follow her example and change the perception of those living with the condition.
Ruth said: “The most difficult thing for me is my daughter. I can’t bear the thought of not being able to look after her any longer or not be here with her in the future.
“Like any mum I utterly adore her and I have shed so many tears even thinking about it. It’s tricky though, because the thought of not having her is so much worse. She keeps me smiling every day.”
Ruth said the signs of her condition had appeared early last year, revealing she had begun experiencing a lack of muscle dexterity which had slowly got worse over time.
However, she recalled it was a while before she made an appointment with her doctor, only seeking advice months after the symptoms began.
She said: “I first realised something was wrong about five months before I even went to the doctor.
“I started noticing my speech slurring – especially after having even a tiny bit of alcohol.
“I didn’t go for quite a while but it got more and more obvious and I started finding it hard to chew, or brush my teeth, without dribbling everywhere.
“I’m having problems with the simplest thing; my speech is bad, it’s slurred all the time.
“I have great difficulty eating and am beginning to notice swallowing is tricky.”
Ruth continued: “I have also now got difficulties with my hands – I have lost a lot of dexterity like putting my hair in a plait, cutting vegetables or putting on my daughter’s clothes.”
Ruth had only just returned to work as a building services engineer after a year away on maternity leave when she received her diagnosis.
However, she has since been forced to quit her job in order to spend more time with Anna, though does have a part-time role as energy consultant for a local charity.
She said: “Since being diagnosed I have not been back at work and am not anticipating going back.”
“I’m sure that I could carry on in a different capacity but my lack of speech, difficulty with my hands and exhaustion would make it a lot to take on.
“That coupled with the fact I have a one-year-old who I want to spend as much time with as possible I have decided to no longer carry on at work.”
Ruth added: “I am saddened by this a lot as I loved my job. I had an amazing manager, great colleagues and it really was an inspirational place to work.
“It makes me so sad as I was thrilled to be able to work three days doing something I enjoyed and truly believed in, and then spend the rest of the week with my wee girl.”
Prior to her diagnosis, Ruth and Scott had put the deposit down on a new house, but Ruth revealed uncertainty over her future meant the couple, who have been married since 2014, were forced to reevaluate their plans.
She said: “I have found it incredibly difficult to come to terms with and not sure I ever will. I had dreamt of having a big family, doing all my favourite things.
“We bought a house just before I was diagnosed, but due to what the future is likely to hold we had to pull out and have since bought a ground floor flat with a garden.
She added: “We did however buy the nicest possible flat we could in a lovely area, which has helped.”
The disease can usually be separated into three distinct conditions, with the most common form of MND being Amyotrophic Lateral Sclerosis (ALS) and rarer variants of the disease including Progressive Muscular Atrophy (PMA) and Primary Lateral Sclerosis (PLS).
The condition affects the motor neuron cells which control the voluntary muscles in the body.
In a healthy person, the cells carry signals from the brain directly to the muscles.
However, MND stops signals from the brain reaching the muscles, over time causing muscles to weaken and eventually stop working.
Because of the rarity of the illness, MND is an extremely difficult condition to diagnose.
Few cases follow exactly the same pattern and diagnoses are often complicated as patients may have been referred to various specialists before seeing a neurologist.
In Ruth’s case, the eventual confirmation carried a warning from specialists.
Ruth said: “The neurologist I initially saw advised me not to Google anything. This was the best advice as ignorance is definitely bliss.”
She added: “I didn’t have any idea MND was a possibility [when I went to the doctor].”
In addition to difficulties with movement, MND sufferers can also experience severe problems with their respiratory system and weight loss caused by an inability to swallow properly.
Famous sufferers of the condition include physicist Stephen Hawking and Scottish rugby legend Doddie Weir, who revealed he was also battling the illness in a post on social media to mark global MND awareness day on June 21 last year.
Originally from Oban, Ruth moved to Edinburgh in 2009 and met Scott while the pair were both members at Corstorphine running club.
She said the effect on her passion for keeping active was one of the hardest aspects of the condition to come to terms with.
“I was particularly passionate about running, cycling and skiing but also loved swimming, sailing, hill walking and climbing in my years at university,” said Ruth.
“Basically I just loved being active, and now I can’t do any of that anymore.”
The condition can cause some patients to experience a change in behaviour, though Ruth said it was the attitude of other people towards her since her diagnosis that had shocked her the most.
However, she is determined to raise awareness of the illness and hopes encouraging conversation around the condition can help others feel “less awkward” around patients.
Ruth – who also spent two years living in New Zealand before moving to the Capital – revealed: “People can be very awkward when I try to speak and make an automatic judgement.
“Recently I went to book an appointment in a new hairdresser and the girl went bright red and just didn’t really know what to say.”
Ruth continued: “My speech gets worse when I’m stressed so I ended up having to leave without making an appointment. It’s so hard because I’ve always been a chatty person and would speak to anyone and everyone.”
She added: “I didn’t know much about MND before I was diagnosed except that it’s what Stephen Hawking has. That’s why I am speaking out; to raise as much awareness as possible of this beast of a disease.
“Hopefully the more we can make people aware of MND, the less awkward people will feel when they come across someone who is living with it.”
Ruth has been in regular contact with charity MND Scotland since her diagnosis and is set to receive counselling from their team of experts.
The organisation helps to fund research into a cure and provides resources for those living with the disease.
There is currently no known cure for the condition, however new drugs and treatments to help slow the progress of the illness are being developed all the time.
Currently the only drug available to directly affect MND is called Riluzole or Rilutek.
The drug slows down the progression of MND and helps patients stave off the need for a ventilation tube to aid with breathing difficulties.
Ruth said: “I know my family and friends have all found it hard but luckily I have an amazing family who are all very close. In addition, all of my amazing friends have helped me massively by keeping me doing nice things and staying in touch all the time. It is these small things, that without them, would make this whole situation even worse.
“I have had the offer of counselling from MND Scotland which I’m currently pursuing and many lovely emails offering support.”
She added: “I’m sure I’ll need to take the charity up on a lot more support in the coming months, but for now I am spending every minute I can with Anna and Scott, and my family and friends.”
Craig Stockton, chief executive of MND Scotland, said: “I’d like to thank Ruth for bravely sharing her story. Raising awareness of the devastating effects of this disease is vitally important.
“I’m pleased MND Scotland has been able to help Ruth and we will be here to support her and her family during this time.”
•A JustGiving page has been set up by Ruth’s husband, Scott, in an effort to aid the family in their fight against MND.