When Perthshire great-grandmother Elspeth Munro was in her late 60s, she had to stop eating in public because she felt it was “too embarrassing”.
Elspeth, who lives in Blairgowrie, was shaking so uncontrollably she struggled to hold a glass and was unable to use cutlery with both hands.
“When I was younger I was a very social person,” recalls the 82-year-old.
“I ate out a lot with friends.
“But I had to stop going out to eat because it was so embarrassing.
“It became a no no because I had to ask for my food to be cut and I struggled to use a fork so I could use my fingers.
“That was because my hands were shaking so much.”
When Elspeth was in her 40s, she was diagnosed with a condition called substantial terror.
It causes an involuntary rhythmic tremor of the arms, hands and head and can occur when the person is at rest as well as when moving.
He has battled the condition, which affects more than 4,000 people in Scotland, for the past four decades.
But in recent years he has been able to get relief from the tremors after deep brain stimulation (DBS) surgery.
It involves a surgeon placing tiny electrodes in certain areas of the brain.
And these electrodes help correct faulty brain signals that cause tremors, especially in the arms and legs.
When did Elspeth’s tremors start?
Elspeth started having involuntary tremors when she was about 42-43 years old.
Her symptoms began when she noticed her hand shaking.
“It was the right hand to start with and then my left started shaking,” she explains.
“But I was able to control my right hand better because I’m right-handed.
“Then my head started shaking.
“At the time I was working as an office manager and it soon became difficult to write.”
Her condition gradually worsened and she soon found her daily activities becoming more difficult.
“Eating and drinking were the two hardest things and trying to get the toothpaste on the toothbrush was difficult.
“So many things were a challenge and when it got worse, preparing and cooking food also became very difficult.”
Basic diagnosis of tremor
Elspeth remembers going to see her doctor when she was in her 40s.
“My GP referred me to a neurologist at Perth Royal Infirmary,” she says.
“The neurologist diagnosed idiopathic tremor and I remember being quite disappointed when I found out that was it.
“I didn’t know much about the condition at the time, but my neurologist told me it could be hereditary.
“I remember my mom shaking, but it wasn’t as bad as mine.”
While Elspeth was disappointed with the diagnosis, she felt confident that the medication would help.
Trying different medications for essential tremor
The first drug Elspeth was given was atenolol and she was then prescribed another drug called propranolol.
But he struggled to deal with the side effects.
He continued: “They both gave me headaches so after a few months another pill was tried.
“I couldn’t stand that either.
“While the medication helped slightly with the tremors, there were too many side effects.
“The last thing I tried was gabapentin, but it caused brain freeze and I just couldn’t function.”
Specialized Botox treatment
In 2016, after years of trying different drugs, Elspeth returned to her doctor because her condition had gradually worsened.
On this occasion he was referred to consultant neurologist Dr Tom Gilbertson at Ninewells Hospital in Dundee.
“I watched Ninewells every three weeks or so and they had special Botox injections into the nerves at the back of my neck,” she explains.
“And my god my head stopped shaking!
“The only time it comes up now is when I’m stressed about anything.
“I had about five or six treatments and there was gradual improvement.”
Dr Gilbertson also referred Elspeth to the Queen Elizabeth University Hospital in Glasgow to speak to neurosurgeons about deep brain stimulation (DBS) surgery.
What is deep brain stimulation?
Deep Brain Stimulation used as a treatment for some people with tremors.
It is an option for patients whose tremor significantly affects their quality of life.
It involves very thin wires with electrodes on their ends, which are implanted in the brain.
The electrodes send a continuous electrical pulse to change some of the electrical signals in the brain.
This reduces the symptoms of panic.
These wires are then connected to a pulse generator (a device like a pacemaker) that is placed under the skin in the chest or stomach area.
The patient is given a hand controller that is used to turn the DBS system on and off.
Make device adjustments over time
Elspeth underwent DBS surgery at Queen Elizabeth University Hospital in 2019.
“I didn’t see any improvement right away because they couldn’t turn it on until everything was healed.
“But four months later the device was activated by a huge magnet and it was just incredible.
“At first I felt very strange and my face contorted. I also couldn’t talk.
“So they had to lower the bar quite low. I had to keep going back to the hospital so they could make adjustments.”
Once all the adjustments were made, Elspeth began to get used to her device.
He said: “I call my handheld Gizmo!
“I can control how much impulse is sent to the left or right hand and it’s definitely very effective.
“And I turn off the controller when I go to bed at night.”
How DBS surgery changed her life
Elspeth said her friends could see how much the DBS treatment had improved her condition.
“I had the controller in my bag, but I was shaking terribly and I couldn’t figure out why.
“So I took the remote out and it was kind of off.
“I immediately opened it again and my friends couldn’t believe the difference.
“They said, ‘Oh my God, you stopped shaking!’
Spending time with family
Elspeth has a lot of support from her family, including daughter Shirley, 58, who lives in Cheshire.
She also enjoys spending time with her three granddaughters Robyn, 34, Stephanie, 35, Alex, 28; two great-grandsons Lucas, 12, and Elliot, 5, and four-month-old great-granddaughter Emilia.
And now he is able to do this without experiencing severe tremors.
Unfortunately DBS surgery is not a cure for essential tremor.
But DBS is thought to provide moderate relief for about 90% of patients with the condition.
While Elspeth has help from her partner Jim Neilson, 85, with some chores such as shopping, she is now able to iron and cook for herself – thanks to the surgery.
Elspeth said: “It’s almost like night and day, but not 100 per cent.
“However, I wouldn’t want to put anyone off having a DBS because everyone is different.
“It might turn out to be even more magical to someone else than it is to me.
“It could have something to do with my age.
“But I know that if I hadn’t had this treatment, it would have been impossible to take care of myself.”
