MS: Many Stories – Managing MS Through Lifestyle

It is fantastic to once again be able to revisit our MS: Many Stories series, where members of the MStranslate community share their personal insights and experiences of living with multiple sclerosis.  This latest instalment is from Lyn, who is writing an article of this nature for the very first time.

We are deeply grateful for her contribution and have no doubt that others will relate to, and benefit from reading about, her journey.

Hi, I’m Lyn and I am 56 years of age.  I was diagnosed with MS in 2004 after two years of unexplained symptoms (eyesight problems, pins and needles, numbness).  Rebif was prescribed, but only at half dose, as the side effect of flu-like symptoms was too much.  After four years I decided I had had enough of constantly feeling ill, and I stopped the Rebif.  I felt much better immediately and was very healthy, on no medication, until my relapse in 2010.

In 2010 I had the one and only serious relapse I have ever had.  I believe this occurred through me suppressing my feelings of grief at my mother-in-law’s death and trying to keep it together for my husband and children, one of whom was in Year 12 VCE at school.  The relapse caused me to lose the use of my right arm and right leg, impaired my speech and concentration.  Prednisolone was wonderful, and the symptoms eased somewhat.  I made the mistake of going off it too early and the symptoms came back with a vengeance.  Lesson learned.   My neurologist prescribed Copaxone, which I tolerated well, and I am still on now. Slowly things started to return to normal, though with some deficits (heaviness in limbs, speech problems, slowness in finger dexterity, mental blocks).  It wasn’t until 12 months later that everything was back completely.  

This was a wake-up call and I started to do some research.  I heard about Professor George Jelinek, so I read his book, “Overcoming MS”.   I began implementing his recommendations under that program by significantly lowering my saturated fat intake, reducing the amount of processed foods and dairy in my diet.  Meat is still on the menu, but is usually quite lean; this is a work in progress.  Now I cannot eat anything too fatty, so that makes it easier.  I had been doing yoga for over 15 years and I loved it, not only for the exercise but also the mindfulness, meditation, and overall relaxation; now I started to take it more seriously and practise meditation at home.   

Research suggests that adequate sun exposure and vitamin D intake can have beneficial effects on the health of people with MS.  To keep my vitamin D levels high I sit in the sun with as much skin exposed as possible, and limit this to 10-20 minutes a day, depending on the season.   Unfortunately, it is not possible to do this every day due to Melbourne’s weather, but it is one of my favourite things to do.  It feels good knowing I’m soaking up lots of vitamin D.  Occasionally I take vitamin D supplements through the winter months.  

I am a court reporter, a job which I adore.  I sit on the Bench next to the judge and, using a stenograph machine, I write in shorthand everything that is said in court.  This requires enormous concentration, listening carefully to every word and writing it down accurately, with the English translation of my shorthand appearing instantly on the judge’s laptop and those of the barristers’.  I typically write for 1¼ hours, but sometimes I end up doing 2½ hours continuously.  Physically this is quite demanding because you cannot get up and move around, you are motionless except for your hands flying across the keyboard, sometimes without pause.  You need a high level of dexterity in your fingers and hands.  

After the episode in 2010 I had to relearn some of my shorthand outlines and regain the speed that I had lost.  It was interesting that some of my shorthand outlines had regressed to the style that I had first learned 27 years previously.  Since I had to “reinstall some of the software” in my brain, I decided to make some improvements which would help improve my accuracy and speed.  

With the support of wonderful work colleagues, and having to work through some very frustrating days, I gradually improved.   Doing finger exercises helped get my brain into gear each morning before I started writing.  I would individually lift each finger one after another, getting faster as I went.  It was as though I was clearing a pathway in my brain which had become clogged and slow.  It felt like everything was still in my brain, I just couldn’t seem to access it.  I had to either clear the blockage or find another pathway and cement that in.   One day while I was in court, writing shorthand, I realised that for the first time the blockage had cleared and I was back to normal.  It was as though someone had taken the governor off my accelerator and I could go full speed again.  I achieved my goal of being able to write at more than 200 words per minute again.  

Following my experiences, I became fascinated with the brain, and I read Norman Doidge’s books, “The brain that changes itself” and “The brain’s way of healing”.  I thought I could improve my situation with his findings; I could and I did.  I completed the Posit Science brain training course and improved my cognitive ability.  This course was intense and hard work, but I obtained a 61% increase overall in cognitive abilities.  The proof was when the words of songs became clearer.  I also found I could memorise and repeat longer strings of numbers and words.  

Another field of science that came to my attention was epigenetics, and I read Dr Craig Hassad’s book, “Playing the genetic hand life dealt you”.   The study of epigenetics examines the levers and switches acting on DNA, turning some genes on and others off.  It is interesting how we can influence this by environmental factors and lifestyle.  Dr Hassad  now works closely with Professor George Jelinek and promotes the concept of mindfulness in our everyday lives.   It is a challenge to stop and “smell the roses” as much as we should, but I try to mentally stop and check how I am feeling whenever I can.

Shannon Harvey’s DVD “The Connection” was inspiring and motivational, and gave me the belief and encouragement that I could do this.  It backed up all the research I had read, and I would urge everyone to watch this documentary as it applies to us all.

Of utmost importance for me is maintaining emotional stability and mental health in order to stay well.  I need to constantly monitor my stress levels, as I am easily influenced by peoples’ emotions, their attitudes, and the situations around me.  Whenever I notice that I am a bit down, dispirited or even unwell, invariably it is because I have let myself be overwhelmed with either family or work stressors, and probably not doing enough meditation and mindfulness!

In the future I would like to see GPs, neurologists, and other clinicians coming on board with alternative methods of treating people with MS, including the importance of lifestyle and environmental changes.  I would have appreciated someone with medical knowledge alongside me when I was doing this research, to ask questions of, bounce ideas off, and to provide me with support, help and understanding.  Even now, when I have moments of self-doubt, having a doctor to turn to for reassurance would be wonderful.  I keep hoping I will find someone.  Medical research is going ahead in leaps and bounds and this can only bode well for our future wellness.

Lyn

To read other articles in our MS: Many Stories series, please click here.

If reading this article has inspired you to write your own MS: Many Stories feature, please contact Brett at brett@mstranslate.com.au to learn more.