Motor Neurone Disease Won't Hold Gordon Aikman Back From Helping Others While He Still Can | HuffPost Life

His Muscles Are Rapidly Deteriorating, But Gordon Aikman Is On A Mission To Help Others

Natasha Hinde— The Huffington Post UK

|

A heartbreaking diagnosis almost a year ago means that Gordon Aikman is now living his life in fast forward.

In June 2014, the 30-year-old found out that he had motor neurone disease (MND).

Since then he's lost the use in his fingers and can barely lift his hands above his head. His legs are weak and, as a result, he's wheelchair-bound most of the time.

When he does attempt to take a few steps, he falls, which leaves him constantly covered in cuts and bruises.

The reality is that Aikman will soon lose control of his entire body and his life will be cut short - according to the Motor Neurone Disease Association, 50% of sufferers die within 14 months of diagnosis and the remainder within five years.

But despite such a bleak prognosis, Aikman has a surprisingly positive approach to his condition.

"Because of the degenerative nature of the disease, I know that today is the healthiest I’m ever going to be," he tells HuffPost UK Lifestyle. "The journey is only going to get more difficult, and if I don’t get out and enjoy what I’ve got now, then there's no other time. It’s now or never."

For Aikman, a terminal diagnosis at the age of 29 has turned his life around: "It changes your outlook on life, it changes your focus. Since last year I’ve travelled more than I’ve ever done, I got married to my partner Joe, it’s amazing."

"I’ve been living a life in fast forward. I'm now trying to pack a lifetime into just a few years."

LIKE HUFFPOST UK LIFESTYLE ON FACEBOOK | FOLLOW US ON TWITTER | WE'RE ALSO ON INSTAGRAM

Aikman has utilised this thriving mindset to launch an action plan, which he hopes will ultimately help researchers to discover what causes MND and hopefully lead them to a cure.

Gordon's Fightback also sets out clear goals that the Scottish and UK Governments need to achieve to help improve the care provided to MND patients. These include:

:: Doubling MND research funding, as doctors need to know what causes the disease to be able to cure it.

:: Improving benefits, as currently it can take up to seven months for people with MND to receive financial help from the state (which, given their shortened life span, is a huge period of time).

:: Make care charges for MND sufferers illegal

:: Double the number of MND nurses

:: Pay these nurses' wages through the NHS, not charity donations.

The two latter points have already been actioned, which is a huge achievement considering just over a year ago he didn't really know what motor neurone disease was. But time is precious, and Aikman understands this more now than ever.

SEE ALSO:
Motor Neurone Disease Awareness Month: What Is MND And Is It The Same As ALS?
Motor Neurone Disease Association Ice Bucket Challenge Poster Really Misses The Mark
Man With Motor Neurone Disease Takes Ice Bucket Challenge

The 29-year-old first realised something was wrong with his health in November 2013.

"I was struggling with the most ordinary, everyday things. My fingers were numb and it was like wearing boxing gloves, I couldn't do my buttons on my shirt, tie my shoelaces, hold cups," he explains.

"I felt a bit daft going along to the doctor and telling him that I had numb fingers, and he was quite dismissive to begin with, saying: ‘Everyone’s hands get a bit stiff when they’re cold’. But I told him it wasn’t just when they were cold, it was happening all of the time."

He remained stubborn and told his GP that something needed to be done. Aikman was then referred to a specialist who sent him for various tests and, seven months later, he was diagnosed with motor neurone disease.

"Now I don’t have any muscles, they’re continually wasting away and as they do that I’m becoming increasingly disabled and unable to move about," he says. "I’m very dependent on my partner Joe, my carers and my family, who pick up so much of the slack where my body isn’t able."

But he says that, despite all of this, his campaigning provides a way of coping and brings focus to his life.

With the help of his friends (who he says have been 100% behind him making this happen), he's managed to raise almost £300,000 which has gone towards doubling the number of specialist MND nurses. And insists that they're "not going to stop there, because there’s so much more that needs to be done".

Story continues below...

21 Rare Diseases

Stiff Person Syndrome(01 of21)

People who suffer from this acquired neurological disorder experience repeated, often painful, muscle spasms as well as muscular rigidity and stiffness. According to the National Organization of Rare Diseases, spasms can occur at random or they can be caused by something as seemingly benign as light physical contact or an unexpected noise. The cause of Stiff Person Syndrome isn't yet known, but symptoms can be stabilized with medication. Left untreated, however, a person can lose the ability to walk.

Gigantism(02 of21)

This disease, which according to the NIH is most often caused by a begnin tumor in the pituitary gland, results in an excess of GH, or growth hormone. This causes sufferers to grow abnormally large, not just in terms of height, weight but also organ size. It results in complications like delayed puberty, increased sweating, and secretion of breast milk.

Pica(03 of21)

Characterized as an eating disorder, Pica causes people to eat what the National Organization for Rare Disorders describes as "non-nutritive" things. That umbrella term can include (but isn't limited to) dirt, clay, paper, and paint. Interestingly, it's not unusual for young kids to experience transient pica as a kind of phase, and pregnant women are also known to develop temporary pica cravings. The cause? Unknown. But in order to be diagnosed with full-blown Pica, a person's symptoms must last for more than a month.

Maple Syrup Urine Disease(04 of21)

MSUD, which is passed down through families, is a life-threatening metabolic disorder passed down through families that stems from the body's inability to process certain amino acids, leading to a build-up of them in the body. According to the NIH, symptoms usually surface in early infancy and can include vomiting, lack of energy, seizures, and developmental delays. MSUD takes its name from another symptom -- the urine in affected infants smells like caramel or maple syrup.

Situs Inversus(05 of21)

Situs Inversus is a congential condition in which internal organs of stomach and chest lie in mirror image of their normal body position -- something many sufferers aren't aware of until they seek medical help for an unrelated problem. People with Situs Inversus typically wear some form of identification to help doctors in the case of a medical emergency.

Trigger Thumb(06 of21)

Trigger thumb, or trigger finger as it's sometimes known, causes a person's finger or thumb to get caught in a locked position. According to the Mayo Clinic, it can then stay stuck or straighten with a painful "snap." The cause? It depends. Trigger Thumb is the result of a narrowing of the sheath around the tendon in the problem figure, but that can be caused by a lot of things, including any activity that requires people to grip things frequently. Trigger Thumb is also more frequent in women.

Scurvy(07 of21)

Once the disease of sailors and pirates, scurvy does still exist in the United States, though predominantly in older, malnourished adults. It usually stems from a Vitamin C deficiency, which can result in gum disease, skin leisons, and swelling of the joints. (credit:Getty )

Wilson's Disease(08 of21)

This progressive genetic disorder causes sufferers to store excess copper in tissues, including the brain and liver. Though the Mayo Clinic says that the body depends on copper in order to use iron and sugar, too much of it in the body can have real consequences. Which is why sufferers of Wilson's Disease are prone to liver failure.

Foreign Accent Syndrome(09 of21)

According to researchers at the University of Texas at Dallas, this speech disorder causes people to experience a sudden shift in their accents and though it is known to be caused by things like brain trauma, conversion disorder, or multiple sclerosis, an exact reason behind the syndrome is unknown. Sufferers of FAS dramatically shift their speech in terms of timing and intonation, which often causes them to sound foreign, but they remain totally comprehensible. Documented accent shifts include from American English to British and from British to French.

Carcinoid Syndrome(10 of21)

According to the National Organization of Rare Diseases, about 10 percent of people with carcinoid tumors -- which the Mayo Clinic says are slow growing tumors that produce excess serotonin and usually appear in the gastrointestinal tract or lungs -- get this syndrome. It occurs only in patients whose tumors have metastasized to the liver. The symptoms? Wheezing, hotness, and extreme facial blushing.

Cyclic Vomiting Syndrome(11 of21)

Children and adults afflicted with CVS experience recurrent episodes of severe vomiting, which can last for days, followed by sudden periods of no vomiting. While kids are likely to experience more frequent attacks, adults's often last longer. To date, the cause of CVS is unknown.

Peeling Skin Syndrome(12 of21)

This obscure, genetic skin disorder does exactly what its name implies: causes sufferers to experience constant shedding of their skin. (In some patients, peeling is limited to the feet and hands.) Along with that, sufferers often feel itching and redness -- symptoms that can appear from birth or develop later in life. Although the exact cause is unknown, a mutation in the TGM5 gene has been identified in many sufferers.

Platelet Storage Pool Deficiency(13 of21)

This is a blanket designation for several rare platelet abnormalities, most of which lead to mild or moderate bleeding disorders. According to the NIH, the problem stems having limited granules -- the parts of platelets that, among other things, store ADP -- the energy released when a molecular bond is broken. That reduction in storage space inhibits the platelets' ability to secrete ADP in a speedy fashion, which is thought to be what causes the bleeding. Classic symptoms of a Platelet Storage Pool Deficiency are nosebleeds, excessive bruising, and profuse bleeding in surgery.·

ACDC(14 of21)

Only nine people in the United States are known to have this disease, which was just given a name in a recent study in the New England Journal of Medicine. ACDC, or arterial calcification due to CD73 deficiency, results in calcium build-ups in the arteries below the waist of sufferers and in the joints of their hands and feet. According to the NIH, the breakthrough discovery found that the disease is related to a variant in the NT5E gene.3

Conversion Disorder(15 of21)

This condition, which typically occurs after an extremely stressful emotional event, causes a person to experience sudden blindness or paralysis that can't be otherwise explained. People with mental illlnesses are at particularly high risk and psychological treatment can help lessen the symptoms.·

Ochronosis(16 of21)

Ochronosis results in black or blue external tissues, often the ear cartilage or eye, though it can occur throughout the body. It affects people who suffer from certain metabolic disorders, but it can also be caused by exposure, though scientists aren't exactly sure to what. Not just a cosmetic issue, the affected areas can become brittle and degenerate over time.

VLCAD Deficiency(17 of21)

This condition, which is caused by genetic mutations in the so-called ACADVL gene, keeps people from converting certain fats to energy. According to the NIH, the deficiency often presents during infancy in symptoms including low blood sugar, weakness, and lethargy.

Hairy Tongue(18 of21)

As the name suggests, Hairy Tongue is a condition in which the tongue develops a black, hairy texture. According to the Mayo Clinic, the disease is "harmless" and is caused by an overgrowth of bacteria in the mouth, which can be treated with antibiotics. The NIH reports that hairy Tongue can also present as brown, yellow, or green discoloration. ·

Ochoa (Urofacial) Syndrome, or, Peculiar Facial Expression(19 of21)

This obscure, inherited disorder presents at birth and causes infants to grimace when, in fact, they are attempting to smile. The disorder also includes an extreme urinary abnormality: an obstruction that interrupts the connection between nerve signals in the spinal cord and bladder, leading to incontinence. Though treatment does exist in the form of antibiotics and bladder re-education, some patients can develop renal failure in their teens and 20's, which can be life-threatening.

Eagle Syndrome(20 of21)

This syndrome, caused by a particular calcified ligament or elongated bone, frequently causes sufferers to feel that something is stuck in their throat. (Scientists don't know the reason behind said elongation/calcification.) Other symptoms can include ear and throat pain as well as difficulty swallowing. According to the NIH, it can be treated surgically or non-surgically with steroid injections and other anti-inflammatories.

Progeria(21 of21)

According to the Mayo Clinic, only around 130 cases of this devastating genetic disorder have been documented since it was discovered in 1886. Affected babies normally appear normal at birth, but within 12 months begin to have symptoms like hair loss and wrinkles. According to the Mayo Clinic, progeria is caused by a genetic mutation, but not one that's passed down through families; it's a chance event that affects only one egg or sperm. The average life expectancy for sufferers is 13.

While the future is uncertain for Aikman's health, he's making the most of living for the moment.

On 28 March he married the love of his life and more recently, he was issued a doctorate from the University of Edinburgh - something which he's incredibly proud of.

"Hopefully I have a lot longer to go, but nobody knows," he says.

"We’ve just got to get out there and make the most of it. I could sit in the house, feeling down and sorry for myself, but that’s not going to make you feel better or make things better for anyone in the future."

His advice for people who have recently been diagnosed with MND?

"You've got to keep your chin up and keep fighting. The moment you give in to it, it's game over," he explains.

"Even with an incredibly bleak, terminal diagnosis, there is still so much life and happiness that can be had.

"And yes, I'm in a wheelchair now and yes, people stop and stare, but I'm still happy. I'm still getting out there and doing the things that I want to enjoy and achieve."

Related

uk lifestyle news Health Health News motor neurone disease uk whats working

Suggest a correction

|