Tips for life with MS

At the age of 21 Nick Allen, an active young kiwi began experiencing his first symptoms. At 25 he was diagnosed with progressive MS. Nick grew up climbing, tramping and mountain-biking until he was diagnosed and found himself living in a wheelchair. He decided to fight back and through the support of his family, friends, changed his diet and lifestyle and in 2015 summited Island Peak (6,189 metres) in the Himalayas. Nick is passionate about helping others and so created the Mastering Mountains Charitable Trust and the Mastering Mountains Grant to help others living with MS to overcome obstacles that prevent them getting outdoors.

In September 2016 Nick Allen’s first book To the Summit: Getting out of a wheelchair and to the Himalayas‘ is released. Published by Massey University Press and available for RRP $39.99.


1. Don’t Give up Hope

When I was first diagnosed, I thought I had been handed a death sentence. For me, the resulting sense of hopelessness was just as debilitating as the actual disease. I didn’t think there was any point in attempting to make changes that might improve my condition and was miserable.

MS changes everything and makes life tough, there is no doubt about it, but there is still every reason for hope. Life with MS can still be rich and full and I think it is important not to forget it. This is the belief — the hope — that carries me through those tough times and gives me a reason to keep on going.


2. Find Something to be Passionate About

In addition to hope, I need something to get me out of bed in the morning: something to be passionate about. Getting outdoors is one of the things that motivates me to keep on going. More than just an interest, finding a deep passion — even if it is for something completely crazy — is important because it will give you a reason to make changes and press on through the hard times.


3. Work Toward a Goal

Make an achievable goal that relates to your passion and work toward it. In the last few months, I have experienced a good deal of physical struggle and my balance has gone backwards, but I want to be able to do a bit of tramping and climbing in the summer. To get there, I need to work on my balance. Right now, one of my goals is to be able to balance on one foot again for more than 10 seconds with my eyes closed. This will take some work, but it is achievable and once it’s accomplished, I will try to balance for more than 15 seconds. Setting small, achievable goals like this makes it easy to measure progress, which I find hugely empowering.


4. Find Supportive Community

Pursuing a goal that you are passionate about is still a lot of hard work, particularly when the going gets tough. There are times when I have been discouraged and I have thought about giving up. That’s when I need my supportive community to encourage and help me.

A supportive community is made up of people who are excited about seeing you achieve your goals and pursue your passion. They are also the people who understand you, won’t judge you when you talk to them about your struggles, and will keep supporting you unconditionally. We all need people like this in our lives, especially if you have MS.


5. Communicate

I am not always very good at communicating how I feel — I hate admitting my struggles because it means acknowledging that MS is affecting me. However, your supportive community can’t help you unless they know what’s wrong! Talking honestly about how you feel is crucial when, in pursuit of your goals, you come to those obstacles that are insurmountable without the help of others. Communication enables you to find a way around these obstacles and overcome them.


6. Eat Right

Eating the right foods is pivotal to achieving my goals. I find that only particular types of food provide the energy I need. Every person will be slightly different, but I work off the Jelinek Diet, have made a few tweaks here and there, and now really notice the difference if I don’t eat properly. Without the right foods, I would struggle to make it through a day, much less a gym session.


7. Exercise Often

Gym is one of the key ways I keep on top of spasticity, pain, and issues such as balance. Progress is often slow — it is has taken me six years of attending the gym three times a week to get to where I am now — but progress does happen. Again, having an achievable goal provides the motivation you need to keep moving and a way of measuring that progress. Exercise can be challenging with MS but no matter how limited your exercise may be, it will be worth it.


8. It’s OK to Fail

To begin with, I was afraid of pushing to hard and crashing. A single, overly ambitious workout at the gym will knock me flat for a week. However, it is only in the process of getting knocked flat that I have learnt where my boundaries are, and figured out what not to do. Pushing the envelope in this way allows you to learn how to navigate the minefield that is MS and achieve your goals. I realise now that failure is often the way to achievement.


9. Say No to Stress

I am hopeless at saying no to people, which is silly because stress also knocks me flat. This is one of the areas I most need to address in my own life — I find it hard to disappoint people. However, stress management is such an important part of living well with MS. As someone still trying to figure this out, I suspect that the secret may lie in consciously making my decisions in accordance with my passions and goals. If saying yes to something means that I won’t have the energy to pursue my goal, I need to ask myself if it is worth the stress.


10. Be Thankful for the Little Things

Life is not one continuous mountain-top experience, nor can it ever be. In between those mountain tops are the vast, monotonous valleys of everyday life. It is in the monotony that I find it easiest to loose sight of hope. However, one of the ways that I remind myself of the hope — of those mountain tops experiences — is by enjoying the faint glimmers of hope we see every day. Sometimes, it is simply in the way the afternoon light falls across a cobweb, the bead of morning dew on a bed of moss, the friendly smile of a person walking by, or the kind word spoken by a dear friend when you’re feeling down. There is so much beauty around us, so much for which to be thankful, so much to live for.


MSNZ Resources
Further information

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Reading material to assist those affected by MS

Glossary of MS Terms

Glossary of MS Terms