The story

What is MS?

The nerves in the body have a coating on them, called myelin, that insulates the messages that travel along them, in the same way as the insulating material around electrical cables does. In people with MS something attacks the myelin randomly and damages it so that messages sent along the affected nerve can go astray in the same way as broken insulation around electrical wires can cause the signals to jump elsewhere. When the body repairs this nerve damage it results in scar tissue around the nerve and this type of tissue is not as good a conductor as the original so messages along the nerve travel more slowly. The term Multiple Sclerosis means “multiple scars”.

The assumption is that the body’s own defence mechanisms are the source of the attack, hence the description of MS as an auto-immune disease. The mystery of MS is that no one knows what causes the immune system to attack itself.

There are two forms of MS – relapsing/remitting and progressive. In the relapsing form the attack (relapse) is followed by a recovery (remission) and when the myelin is rebuilt there is a resulting weakness that remains because of the scar tissue. The progressive form is characterised by a gradual weakening of muscle response that usually has no recovery phase.

As the load of scar tissue increases along affected parts of the nervous system messages along them are slowed down even more and a progressive weakening of muscles occurs as the signals to them are diminished. The principle of “use it or lose it” comes into effect and these unused muscles deteriorate and eventually atrophy. The reason for the gradual loss of mobility, therefore, is that the muscles weaken through lack of use because the nerves can no longer stimulate them effectively.

The important message here is that the muscles of the body are not affected by the MS directly, only the nerves are, so it’s possible to strengthen and rebuild them. As the brain is “elastic” and capable of learning, it’s possible to “rewire” it to bypass damaged nerve pathways in the process.

My story

I had my first episode of MS in 1981. It was double vision and was treated using steroids so I recovered my vision in about 6 weeks. I have the progressive form of MS and experienced a gradual loss of muscle strength and balance over the next 17 years. By then I used a walking stick at all times and frequently experienced falls. After the initial drug treatment I made a choice to avoid medication of any sort and still take no pharmaceuticals for the problem. I believe that the available drugs are a bigger problem than the MS itself because they are not a cure, merely an insurance policy.

By 1998 I’d tried just about everything I could think of from the alternative medicine field with no joy so I tried an unusual experiment. As a teenager I’d been an ice skater and I wondered whether I could still do it so I headed over to Boondall Iceworld, put on a pair of skates and stepped onto the ice. It was probably the most embarrassing moment of my life when I realised that I could barely stand and had to tow myself around the barrier. It didn’t occur to me to turn around and go back so I stuck to it and slowly made my way around the rink. The circuit took me 45 minutes and it was a great relief to get off the ice. I thought it had been a failed experiment until I took off my skates, put on my shoes and stood up to walk out.

Surprisingly, I was able to walk with more strength, which was unexpected as I thought I’d be fatigued from my work around the rink. So I went back the following week and was delighted to find that I was able to complete 3 circuits of the rink in 45 minutes. A week later I went around the rink 5 times in 45 minutes so I went straight to the rink shop and bought myself a pair of skates. Why the skating was so beneficial was a mystery until I worked out that my leg muscles were being activated again after a long time of little or no exercise. This activation resulted in a gradual improvement in muscle strength.

Skating became a regular activity for me and a year later I timed myself again. I could do the circuit in 4.5 minutes! By this time my walking had also improved and I was able to completely give up using my stick by 2002.

In 2000 I had joined a gym and started weight training. When I first tried the leg press at that time I could only push 20lbs very slowly for about 20 seconds. The last time I checked myself I was up to 145lbs and could work at it for over a minute. I now have a personal trainer who gives me a hard time once a week.

I strongly believe that my recovery from progressive MS (this isn’t the usual outcome) has been possible because regular exercise has resulted in a rewiring of my neural circuitry. I had an MRI recently which showed that there has been no change in terms of the existing lesions. The fact that the lesions still exist while my mobility has improved indicates that I no longer use the damaged wiring.

It is my firm belief that my experience is not a miracle or unique and that many people currently living with MS can benefit in the same way by participating in a weight training program.

Medical research

Millions of dollars have been invested in research and still the mystery remains. The people who will possibly benefit from this spending are most likely going to be those people who have yet to be diagnosed with the illness, not those who have it here and now.

The drugs currently available do not cure the disease. They are intended to reduce the number of likely relapses only, as the frequency of relapses determines the amount of damage to myelin. However, the frequency of relapses is a totally unknown factor so whether the drugs are working or not is mere speculation. The best way to determine this would be to observe the patient’s progress over a 12-month period then use a time-machine to rewind and see what difference the drugs would have made, if any. This is clearly impossible so individuals have to take a gamble on the outcome.

If, in 10 years time or later, there is a cure for MS then those people who are given that cure will still have many years of recovery ahead of them. It makes sense to me to start the recovery process now so that the cure will simply be icing on the cake.

Other factors

A diagnosis of MS is a frightening prospect. The possible outcomes are daunting and debilitating. I went through all of the usual denial processes until I came to accept the diagnosis and from there was able to work out how to manage the illness for myself. At the time of my diagnosis there were no medications other than steroids and they were only used during an attack. The usual response from neurologists was a “wait and see” approach. I am truly grateful for this as I suspect that now drugs are recommended too frequently for people who are newly-diagnosed.

Thought processes in the brain work by chemical interactions between synapses. All chemicals introduced into the body interfere with these interactions and in fact are designed to do so. My choice to manage my illness in non-chemical ways was motivated by my desire to keep my brain chemical-free and functioning as it was intended to. I decided that I could live with physical disability but mental disability was another matter entirely and not for me.

I can understand the fear that motivates people into wanting to try anything that’s available for something as debilitating as MS but I think there’s room for more education on the subject.

My view now is that a “wait and see” approach should be adopted after the first episode and the patient should be referred to a gym to do weight training. This training should become a regular activity even after subsequent relapses, if any. This is advisable because there is likely to be a faster recovery if the patient’s physical strength is at the optimum level for them.

Some of the pieces of gym equipment were difficult to use when I first started due to the weak state of my muscles. I would like to see some of the money raised for MS diverted into the development of equipment that is more specifically aimed at anyone who starts training at a strength level considerably lower than the regular members of the gym.

Above all, I would like to see other people with MS derive the benefits that I have done by participating in a fitness program. It’s taken me 10 years to get to where I am now and if a cure for MS was found tomorrow then I’m already 10 years ahead of the game.