Kicking MS in the Nick of time

Lord knows life gets tough sometimes. Our farming industry in particular has been tough going for the past few years. Mental health and well being has become highly topical. The following blog post is related to mental health, and the toll an illness can take on your mental health. Nick Perkins isn’t a farmer, but he’s experienced emotions that I’m sure everyone can relate to on some level and hopefully you can take something from his story and experience. 

 

It is an honor to have been asked by to write here and I am very grateful for the help to share my story with you all. I am Nick Perkins, a thirty something year old father of two young boys with a loving wife. I am a Computer Systems Engineer and my Wife is a teacher, both my boys are bubbly healthy wee men with attitude to spare, the perfect life, except for one thing. I also have Multiple Sclerosis (MS)

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Pic: Supplied – Nick and Danielle with their sons Thomas (left) and Lachlan (right)

Many people don’t really know what MS is but I’ll try to explain it in simple terms. My immune system has developed a fault that makes it believe that the Myelin Sheath that coats all of the nerves in my brain are in fact an infection. The immune system then goes about doing the job of attacking that ‘infection’ and in turn does damage to the nerves in my brain and central nervous system creating what are generally referred to as lesions on the brain. Every now and again those lesions are on a nerve that controls an important function in my body or brain and the signals that create that function get disrupted. Ultimately what that means is that the attack in my Nervous System can in fact result in a huge array of symptoms anywhere throughout my body.

That leads into my experience, In July 2014 I woke up to find I had lost the bulk of the vision in my left eye, with big black spots and haze floating around. A typical male I tried to ignore it thinking it would come right and I must just have slept a bit funny. Eventually I had to accept I needed it checked and went to the Optometrist who diagnosed Optic Neuritis and advised that it is often an indicator of MS, fast forward to September 2014 after numerous Specialist visits and an MRI and I received my official diagnosis of MS.

Since then I have had numerous relapses, where the immune system goes into overdrive attacking my CNS and pretty much takes me down for 1 to 3 weeks, and have developed a number of new symptoms. Prior to my diagnosis I had been experiencing constant dizziness, it was put down to overwork and stress, we have since realized that was my first real symptom. My memory is dicey at best and I often can’t find the word I am looking for. My right knee is giving out and getting weaker which means I often have to use a cane to get around. One of the things that’s very hard to quantify and not often talked about is the emotional impact it has had on me and those around me.

I can honestly say that the first year after I was diagnosed I can’t define any specific emotion I went through, it was all a blur, but if I am honest it was mostly Anger. Anger that my family and I have to go through this, anger that I may not be able to play rugby with my boys, anger that they may have to grow up explaining to their friends why their dad is in a wheelchair and lastly anger that there was no one I could get angry at.

After the first year went by and I finally managed to start processing and accepting some of the thoughts and new realities of our lives with MS was when I started to get very depressed, the reality that things were progressing and there was no real option to do anything about it started to get on top of me very heavily. Someone told me fairly early on after my diagnosis that one of the greatest causes of death with MS patients was suicide and in fact even more so in Men. At that early point I couldn’t believe it, sure I was angry, sad, frustrated with my diagnosis, but something so extreme was never even close to my mind. It wasn’t until that second year after diagnosis that I had flashes of understanding as to why that might be a very real statistic. Knowing that something is a negative reality in your life and there is nothing you can do about it can very quickly drive you into a pit. For me, I started to think about how my family might be better off if they didn’t have to constantly structure their lives around my MS and worry about how long it might be until they had to ‘care for’ me.

I won’t lie, a lot of those emotions do still pass through my mind, I vividly recall sitting in front of the fire while I was lighting it at home by myself one day a realizing to myself that if some burning wood fell out of the fire at that point I would just sit there and let it happen, and that really scared me once I broke out of that ‘trance’. I have however, learnt ways to work on that. Strangely the best thing I have found is talking about it. I still can’t talk about it face to face and that is where Social media has been my savior. I started blogging my MS experiences from very soon after I was diagnosed and some of those early posts are pretty raw. I found that when I sit down by myself and typed out how I was feeling in that raw format it helped me to feel a lot better, and then when posted on my blog those around me could get a scope of how I was feeling without me having to ‘talk’ to them. And I got a lot of positive reinforcement and encouragement back in return. There are many ways to talk about it but I honestly believe even just writing it down personally has a huge benefit.

The other main thing I have found that helps me is keeping busy, which leads into the next step in my journey.

In February last year I made the call to apply for experimental Stem Cell treatment in Singapore. The treatment involves using a small amount of Chemo to mobilize stem cells from the bone-marrow to the blood stream. Then a dialysis like removal of blood out of my body to harvest stem cells. I then take a break to recover a little. Go back for a large dose of chemo to kill my immune system off. Then I get my own stem cells re-infused to kick my body into rebuilding my immune system, hopefully without the faulty bits. It is a risky procedure with studies showing a mortality rate of between 1 and 3%, and a massive cost of $200,000.

The upside to that is it has given me a project to work on, we are now working to raise that money through various fundraising avenues and have a web site dedicated to our fundraising http://kickingms.nz/ and the events and fundraising has been saviors in keeping me busy. It is the quite, alone times I feel very down, even though it is all I feel like I want is to be alone. Keeping busy and keeping vocal has most certainly saved me to date and I am going to fight this thing and win. For my family!

To donate to Nicks cause head to their website or click here to go to their give a little page. Keep an eye on my Twitter account for upcoming fundraising events in the Wairarapa area – I hear there is even a full restored classic motorbike coming up for auction soon! 

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