I can no longer hug my wife and children after being struck by a devastating illness – anything can trigger it

A DAD says he’s unable to hug his wife and children after being struck by a devastating illness — and even the slightest thing can trigger it.

Up until 16 months ago, Dominic Alderson was living a normal and healthy life with his wife and two children, when out of the blue he started having horrific cramps that left his body stiff for up to half an hour throughout the day.

Dominic was diagnosed with stiff person syndrome

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Dominic was diagnosed with stiff person syndromePhoto credit: Gofundme
Dominic Alderson with his wife Leann and their two children, Harry and Becca

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Dominic Alderson with his wife Leann and their two children, Harry and BeccaCredit: BPM
Dominic led a normal and healthy life until 16 months ago

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Dominic led a normal and healthy life until 16 months agoCredit: BPM

The slightest touch from another person or object, loud noises, a certain smell, or tiredness would be just a few of the things that could immediately trigger another episode.

The 49-year-old, from Barnstaple, was sent to North Devon District Hospital for tests, where he was seen by a neurologist who was able to diagnose stiff person syndrome (SPS).

Although it affects only about one in 200,000 people, both male and female, luckily for Dominic the doctor had seen it before in his career, meaning he had a rare early diagnosis for someone typically suffering from the condition.

Since April 2021, Dominic has been on various medications to control the spasms and has had to learn to avoid triggers that trigger them.

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The most heartbreaking part of his ordeal is not being able to cuddle his wife and children because even someone who brushes lightly on him will immediately go into convulsions.

On a bad day, it can happen eight times, day and night. It also affects his speech and he has developed small ticks.

The former youth football coach said: “I describe it to people as it’s like Parkinson’s disease, but while Parkinson’s attacks the brain, SPS attacks the brainstem and spine and that’s why you get a build-up of antibodies in your joints and when If that builds up, you get cramps.”

He told DevonLive: “The cramps can come from anywhere in the body but mainly on my left side. They don’t feel painful, but what comes after is stiffness.

“Your limbs lock up and it can feel like you’re about to break. Your body can take on very strange shapes.

“I take medication to relax my muscles so they don’t spasm and immunosuppressants to support my immune system, along with other medications. Muscle relaxants release it immediately.

“People’s bones have been known to break during seizures, so I try to keep my bones as strong as possible by going to the gym.

“Sometimes there are warning signs of a cramp, but sometimes it’s like a boom; it just is. It’s not the most pleasant of illnesses and everyone who has it is different. My wife calls it a ‘devastating disease’.

“I can touch people, but they can’t touch me because I get a cramp. That means I can’t hug my wife and kids.

“It’s triggered even by something brushing against me. For example, I was walking the dogs and my wife threw them a ball, which skimmed my arm and sent me into a convulsion.”

PROGRESSIVE STIFFNESS AND CRAMS

SPS is characterized by progressive stiffness and painful spasms in the back and limbs, often triggered by touch, noise, or fear and aggravated by movement.

It is a progressive condition, but only exceptionally does the stiffness increase to the extent that the person must use a wheelchair.

About 40 percent of people also have type 1 diabetes.

There is no cure, but symptoms can be controlled in most people. The most effective drug treatments are diazepam and baclofen, which help reduce stiffness.

Dominic said: “Before I was diagnosed, certain things had been happening to me for the past week or so. It was during Covid and I had been furloughed and fired from a job a few times.

“I found another job and worked day and night. I used to go to the gym a lot but it was closed due to Covid regulations.

“Certain things were happening to my body and I used to joke that I got Tourette’s because I started shaking and cramping. I thought it might be my body reacting to changing jobs and not going to the gym.”

Dominic has lost two jobs since his diagnosis, but since he was denied welfare benefits, he has to work full-time to maintain her family’s home.

He is currently working as a setter for CNC operators.

Although it is a “noisy job” as the noise is constant and reduced by wearing hearing protection, Dominic’s condition is not affected.

He said: “Right now the work is manageable but I don’t know for how much longer. When I wake up in the morning my body is like in a state of shock so I find it very difficult to move. My muscles are tight.” in different directions so I walk weird It’s only half an hour into my work shift that I’m fine.

“But when I get home and sit down, I’ll get a cramp and have trouble walking.”

With Dominic now struggling to walk up the stairs, adjustments need to be made to their family home.

CHARITY SKYDIVE

To fund the work, Dominic’s daughter Becca, 16, bravely embarked on a 15,000-foot skydive on August 24.

The online fundraiser has raised more than £500 so far. Excess money is donated to the SPS Trust.

Dominic, who also has a 14-year-old son, said: “I’d love to join her but I’m pretty sure they won’t let me. I’m very proud of Becca for what she’s doing, when she already is, it means a lot to me.”

For now, the future for Dominic looks like he’ll continue on medication to help control his symptoms.

He said: “I had previously been on immunoglobulin treatments and plasma therapy but that was discontinued because it was costing too much for the NHS. It pretty much eased the cramps.

“I’m currently with a professor in Birmingham studying SPS and I’m hoping he’ll ask me to try again for a period of time to record what’s happening. There is a drug to treat cancer that can reduce SPS symptoms, but it’s also a dangerous drug because it can have serious side effects.”

Anyone interested in donating to Dominic’s fundraiser can click here.

Becca does a charity skydive to raise funds for her father and the SPS Trust

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Becca does a charity skydive to raise funds for her father and the SPS TrustCredit: BPM

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