What it's like living with Ataxia - a devastating illness most people have never heard of

Joking aside, Dawn suffers from the rarest form of an uncommon illness known as ataxia. It has sadly rendered her confined to a wheelchair and at just 49, in the process of receiving palliative care.

Ataxia is often described as a cross between Parkinson’s and cerebral palsy with a dose of MS thrown in. It is so rare it affects just 10,000 people in the UK. But when it strikes, it leaves a scar that tragically does not heal.

Those unlucky enough to have it suffer from poor coordination and balance, often experiencing stroke-like paralysis across the body, including the speech muscles.

Everyone is different but often symptoms will worsen over time until sufferers can no longer walk or talk at all.

Dawn, from Basildon, has Episodic Ataxia type 2. It’s one group of related conditions that affect the nervous system and cause problems with movement.

As a double whammy Dawn also has hemiplegic migraine – one of the most serious and potentially-debilitating migraine headaches which also causes muscle weakness and paralysis.

Dawn wasn’t diagnosed with ataxia until after the birth of her own daughter. Up until then she had suffered from debilitating health problems, but had only ever been put down to the Hemiplegic migraine. That’s the thing with ataxia, it’s so unique many doctors don’t even know about it,.

“It’s something that is very hard to live with, it’s such an isolating condition because it affects everything you do in life,”

said Dawn, from Laindon.

“I have frequent attacks where I end up not being able to move my hands or legs or my entire body sometimes. My episodes are almost identical to what a stroke appears like, luckily I and my husband have come to known how to deal with them, but I do spend a lot of time in and out of the doctors and the hospital. I am now in my wheelchair all the time.

“My biggest fear is what if one day I do actually have a stroke?

“Nobody will know any different as they think it’s an ataxia episode – and there will be nothing I can do about it.”

Although she has been able to have two children and now is a much beloved nan, Dawn’s ataxia has robbed her of a life most of us take for granted.

“I have never been able to have a career or even to drive. I can’t even eat most foods that other people do because I’m at high risk of choking. I can’t eat bread, potatoes or pastry. I also have to add a thickener to my drinks to avoid choking.”

Often those diagnosed with ataxia will say the first symptoms they noticed was falling over more than usual, struggling to walk in a straight line or generally become more clumsy.

Looking back Dawn’s childhood was blighted by her poor co-ordination.

“I knew I was ‘different’ but back then nobody knewwhat it was. I couldn’t ride a bike, I had to ride a trike instead,” she explained.

“Even at sports day at school I was very unsteady on my feet.”

Little did she know at the time, ataxia was the main culprit of Dawn’s problems and unfortunately as some types of ataxia are hereditary she unknowingly passed the condition onto one of her own daughters.

People with ataxia are often mistaken for being drunk when they have episodes due to the stumbling and shaking. This means sufferers are often dismissed and even ridiculed when having an attack in public.

This has happened to Dawn a number of times.

“People judge you,” she said.

“Once I was out in Basildon just coming out of a supermarket and I had a fit on the ramp outside. I was shaking and stumbling about and nobody came to my aid because they thought I was drunk. Some people even tutted and swore at me.”

Dawn’s children and her husband Stephen are her “blessings” and she says she couldn’t get by without their support – as are her “wonderful grandchildren”.

“My grandkids keep me going. I can’t get on the floor and play with them like most nans but I can cuddle up on the sofa and watch a film or sit at the table and do crafts with them,” she said.

Dawn also gets solace from her visits to her local church, St John’s in Laindon Hills where she gets comfort from friends and fellow congregation members.

“When I’m at home I like to be onto the computer whenever I can. I have a special computer that types from my voice recognition to help me when I can’t speak as often attacks will affect my speech. Sometimes I can’t speak for a long time and I have to carry a pad everywhere.”

Dawn runs her own ataxia support group for people across Essex. Meetings are heldregularly at a pub in Basildon.

“It’s a chance for ataxia suffers and their carers and partners to come together and chat and showmoral support.

We have a good time, it’s not all doom and gloom,” she said.

She also runs a Facebook support group for people all over the world who have the same form of ataxia she does.

The provision of healthcare for those with ataxia has improved over the past half a century, but there is still a great deal of work to be done.

Dawn believes the key to getting a cure for ataxia is to fund more research. But that means more people need to know the illness is to begin with – perhaps through a celebrity patron.

“It’s so vital for people with ataxia to be heard.”

For details of the Essex Ataxia Support Group contact Dawn on tynckas@msn.com

I’d never heard of ataxia ...and neither had my GP!

PATRICIA “Patsy” Riggs also knows the pain and challenges of living with ataxia.

The 72-year-old, runs the Colchester and Ipswich support branch of the charity Ataxia UK and works to help other sufferers across the patch.

Again, as so often is the story, before her diagnosis Patsy had never heard of the condition.

“I’d never even heard of the word and neither had my GP,”

she admitted.

“My initial diagnosis didn’t take very long but I was not told I had ataxia. The neurologist told me I had cerebellar degeneration.

When I googled it I discovered the word ataxia.

“The neurologist explained that I had a shrunken cerebellum and had probably had this since birth.

“He told me that I had a tracking problem from back brain to front brain and this was like being drunk without the drink!

“Finding my present neurologist, Dr Rajith de Silva, who specialises in ataxia, has been my mainstay. He referred me to a neuro physiotherapist at Colchester General and that’s where I ammonitored.

“This is quite important as unlike similar conditions such as MS, Parkinson etc, we don’t have special clinics for ataxia patients.”

Patsy added: “I have always been ‘unstable’ but have coped without knowing I had a problem. It was in my late fifties that I started to have falls for no apparent reason. My big toe was growing diagonally and I thought this was the problem. I consulted my GP and eventually had surgery to straighten my foot.

Metal pins were inserted to keep the bones growing straight .

“It was during recovery of this surgery that the physiotherapist noticed my unusual gait and told me to see my GP and this led to my diagnosis.”

Patsy tries her best to stay active and upbeat.

“I now attend physio classes and am striving to achieve optimum ability and maintain mobility,” she said.

“I use a games console to practise yoga at home and do stretching exercises. I also pace myself and rest once or twice a day. I use hypnotherapy recordings to help me relax.”

She says although it can be tough to adapt to living with ataxia, there is some hope.

“The initial diagnosis left me bewildered and wondering how much I would deteriorate,” she said.

“Thankfully when I retired as a secretary, I continued to use my keyboard skills on a desk top computer at home and now am avid user of social websites and online auction sites and other online shopping options. I now have a laptop which is on the table during the day while I am working and on the arm of the reclining sofa when I am relaxing.”

Patsy says her ataxia progression has been so gradual she has been able to adapt to her personal situation incrementally.

But she added: “I haven’t really come to terms with my diagnosis.

When I wake each morning I feel ‘normal’ until I try to sit up.”

What would Patsy’s advice be to someone who has just been told they have ataxia?

“Don’t reject the use of ‘aids’,”

she said. “Try to keep weight down and above all attend support groups. This avoids the feeling of isolation.”

For details of the Colchester and Ipswich Ataxia Support Group email patsy.riggs42@gmail.com 

ATAXIA FACTS

Ataxia actually mean means “lack of order”. It is an umbrella term given to a group of neurological conditions that can affect balance, coordination and speech.

There are over 70 different types of ataxia, with Friedreich's Ataxia being the most common.

In many people, discovering the cause of ataxia is complicated and involves a number of tests and scans. Sometimes it is not possible to find the cause of ataxia.

Anyone of any age can get Ataxia depending on the cause.

Some forms of Ataxia are treatable though in most cases there’s no cure.

Some people inherit it via specific genes that have come from one or both parents, some can get it as a result of damage to the brain such as stroke, tumour or viral infection.

Ataxia can also be a feature of other conditions such as Multiple Scelrosis and cerebral palsy.

In the US, Hollywood actor Ben Affleck has helped garner attention to ataxia after his long longterm friend Joe Kindregan died at the age of 27 from ataxiatelangiectasia.

After his friend’s death Affleck spoke of the need to fund research into ataxia.

Where to get help

ATAXIA UK is the often only lifeline for those living with the condition.

The charity receives no Government funding and relies solely on donations to its small research department.

The charity works directly with scientists to secure grants for vital research into the condition.

The dream of the organisation is to find better treatments and even a cure for ataxia by the year 2020.

As well as its network of local branches the charity also runs a helpline, providing support and guidance to thousands of callers each year.

2015 marks the 50th anniversary of the charity and to celebrate this a series of regional conferences, marketing activities and fundraising events will be held across the UK.

One such event was a London City Bridges Challenge – a six mile guided walk across London’s bridges which took place last Sunday.

The event was held to ties into International Ataxia Awareness Day earlier this month.