At Overcoming MS we are about offering hope, realistic hope based on sound medical research evidence. But we don't pretend to have all the answers.
We try to keep the Overcoming MS website upbeat. The reason is simple. There is any amount of negativity out there about MS.
Any casual look at MS forums, websites, Facebook pages or even at PubMed can lead to a serious dip in mood. Much of the commentary and research can be very negative.
At Overcoming MS we are about offering hope, realistic hope based on sound medical research evidence. But we don’t pretend to have all the answers. Nor is the Overcoming MS Program foolproof or some kind of guarantee against things going wrong. MS is a serious, incurable neurological disease; we know that, and you know that.
What we offer is hope that a person diagnosed with MS who makes all the significant lifestyle changes we recommend can live a relatively normal life, full of health and happiness.
So what can we do for people with MS who do make all the changes, but still have relapses, or still slowly deteriorate in terms of disability?
Our experience is that the majority following the Program do well, but there are people who, despite their best efforts, don’t do as well.
The Overcoming MS Program is a risk modification strategy. We identify through sound research what modifiable factors can be addressed by a person with MS and make recommendations about how to change that.
Through that process of lifestyle change, of risk modification, we hope to reduce the risk of progression of the disease.
But for a proportion of people that doesn’t mean that the disease is no longer active at all. Some people, although they may feel much better with better quality of life and less fatigue, still report the occasional relapse, others that their immobility is progressing slowly. In the early days of adopting the Program, this can be because it takes time for some components of the Program to have their full effect.
Vitamin D and omega 3 supplements for example seem to have very rapid onset in terms of immune modulation. Diet however can take 3-5 years before stability is achieved.
Exercise we know takes quite some time before the body adjusts properly, and so on. Other people though do report that even after 5 years they get the occasional relapse.
This is of course concerning, but it has to be expected with a disease that is so variable in activity from person to person. What advice can we offer someone in this situation? Well, the key over-arching messages are not to let that put a dent in one’s resolve and to do whatever it takes to get well.
There are still avenues to explore even after one has made all the lifestyle changes. A key one is what I call the “more difficult journey”. I recognised when I got sick that even with all the physical lifestyle changes I had made, there was still underlying “dis-ease”.
That is, a number of things were still clearly not right in my life. I found that I had to confront significant emotional issues I had long left buried.
I read a lot of books (Caroline Myss stands out for me), saw counsellors, started keeping a regular diary, made sure I meditated daily, and sought a deeper connection with my life and those around me; in short, I chose a somewhat difficult path, but one I am convinced needs addressing if one is to have the best chance of recovering.
For me, that is a continuous process and is just as relevant now as it was when diagnosed. There are other things too.
If you haven’t yet considered one of the disease-modifying drugs, perhaps because of fear of side effects, then it is important to review this choice. Many of the medications are quite effective now, and they may provide the additional control that stabilises the illness.
There are other things too. One might explore some of the newer therapies appearing on the horizon that have not yet been licensed but are available.
For instance, we have known now for a while about the beneficial immune effects of parasitic infestation of the gut, but now it is possible to purchase a reputable supply of such parasites.
Or a person might try one of the generic, as yet unlicensed medications, such as minocycline, that has a very good safety profile along with a very good chance of being effective.
Everyone has their own individual journey in recovering from MS. We are here to help on that journey, but there are many paths to true health.
How you establish your own path and what you explore is up to you. At Overcoming MS we believe we provide strong evidence-based guidance about a generic path that will help most people, but we welcome everybody with MS whether recovering or not, and hope your input into our organisation can help all the others on their journeys. We wish you all long, healthy and happy lives.
Professor George Jelinek