Learning about MS as we fight for Nick
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As we walk around the Carterton Daffodil Fair, I’m wearing a specially-made t-shirt saying "Kicking MS in the Nick of Time". I have a charity bucket in one hand and my 4-year-old nephew’s hand in the other; he knows that we are trying to raise money to fix his Daddy’s brain.
Looking down at my nephew, I think about his dad, Nick Perkins. At 33, he is only three years older than me and for the last two years he has been living with multiple sclerosis (MS).
I’d known about the neurological disease prior to Nick’s diagnosis, but I was guilty of being naive about MS. I had thought it was a disease affecting people 50-plus years of age and I had associated MS symptoms with a wheelchair.
I, like many others, was not aware that the average age for MS diagnosis is 32, and it is estimated there are around 4000 people in New Zealand who live with the incurable disease.
What I also didn’t know is that MS can be known as the ‘silent disease’ because many people with MS look no different from a healthy person. Every person with MS experiences different symptoms, but the most common early symptoms are the cognitive effects: memory loss, finding the right words during conversations, lack of concentration and attention, difficulties with problem-solving and spatial relations.
Then there is fatigue, blurred vision, sensory problems, and chronic pain. From the outside MS sufferers can look 'normal' or symptoms can be misdiagnosed as work stress, or a pulled muscle.
My understanding of MS changed when my brother-in-law was diagnosed with the disease in 2014. He was a fit and healthy 31-year-old IT professional with a wife and two young boys. I now understand the "silent disease". Yet at times, I am still guilty of thinking he looks normal – "he must be doing well”, but I know he is putting on a brave face and no one can truly understand what is really going on inside.
Nick suffers from minimal external symptoms, the main one being his leg which is weak and occasionally gives out, but the most pressing symptoms are invisible. With persistent fatigue, chronic limb pain, dizziness, reduced vision in one eye and severe brain fog causing whole conversations to disappear from his memory, regular inability to find words when explaining things, and it being near on impossible to concentrate or even listen to someone talking when in a crowded or noisy environment.
Doctors are still baffled by the disease, they are unsure what causes it and currently there is no cure, however there is a new treatment that has shown amazing results to those who have taken the risk.
Hematopoietic Stem Cell Transplantation (HSCT) was first introduced in 1995, and includes a process of removing healthy cells from the body, before chemotherapy clears out the disease in an attempt to 'reboot' the immune system.
The National MS Society noted that "There is exciting and innovative research and progress occurring related to the potential of many types of stem cells for slowing MS disease activity and for repairing damage to the nervous system ... we believe that the potential of all types of cell therapies must be explored".
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Around the world this treatment has been called ‘a major breakthrough in MS treatment’.
In New Zealand HSCT is offered as a cancer treatment. However, it is not offered or supported for auto-immune diseases such as MS.
Don Mackie, the former Ministry of Health chief medical officer, has described HSCT as an experimental treatment that the ministry is watching with interest. Our health system believes HSCT is a controversial treatment yet some medical experts say can help stop MS in its tracks, and halt further progression.
Right now, the New Zealand health system cannot help Nick. Right now is also his best chance to see if HSCT will save his normal functions, those which most of us take for granted.
MS sufferers and their families across both sides of the Tasman are well aware of the Australian nurse Kristy Cruise, who was diagnosed with MS in 2013 and booked herself in to receive HSCT in Russia within four months. Her treatment was successful and she became an advocate for HSCT, appearing on major Australian networks and having her story told on 60 Minutes.
Like Cruise, and many others in New Zealand, Nick is now fighting. This fight is not just the reality of MS, but the financial burden to raise enough money for HSCT in Singapore. With around $70,000 raised, there is still a long way to go to hit the $200,000 mark. If, hopefully when, the money is raised Nick will then undergo three months of treatment in Singapore, to not only wipe out the disease and his immune system, but he will have to spend three months in isolation while healthy cells are placed back into his body.
If successful, he will not be cured, but the treatment will completely halt the progression of his MS, and it is possible his immune system could slowly start to regenerate.
Even though it has come at a price, Nick’s incredible support network and I are now more aware of the insidious disease.
Together we are working tirelessly to raise money for Nick’s cause. We want to raise awareness of MS; Nick was diagnosed following a routine eye exam. For more information or if you can donate or help in any way, see Nick's website here.
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