From the ‘Dark Ages’ to Now … Let’s Start at the Very Beginning

From the ‘Dark Ages’ to Now … Let’s Start at the Very Beginning

making a difference

I’ve been mulling over what to write for my initial post for Multiple Sclerosis News Today. I want to make a splash, to keep you interested and let you know who I am and why I’m here. As Rogers and Hammerstein wrote in The Sound of Music, let’s start at the very beginning.

I was diagnosed with relapsing-remitting multiple sclerosis in 1986. I call that period of the disease “The Dark Ages.” There were no approved medications, the internet was in its infancy, and most medical professionals turned a deaf ear to discussions about alternative therapies.

After my diagnosis my doctor told me to go home, rest and call him for a prescription of steroids if I had any symptoms.

That was then. This is now.

Today there are more than a dozen approved medications for MS, with more in the pipeline. Pharmaceutical companies are clamoring to discover new and better MS drugs. And when drug patents near their expiration dates, researchers scramble to get FDA approval for effective and less-expensive equivalents.   

Competition in the marketplace benefits us.

We also have a lightning-fast means of finding credible information to answer some of our questions. There’s a deluge of reliable websites on the internet. Unfortunately there also are scams and get-rich-quick schemes begging for our attention. Those sites realize our need for a better quality of life so they offer empty promises of instant wellness or cures. Placing your trust in them can carry dangerous and expensive consequences.   

That is why I chose to become certified in patient advocacy. Marrying my new degree with my work as a freelance writer helped me find a way to help others find the information they need. I wanted to help others manage their disease in a way that’s valuable, honest and compassionate. That is my mission in life, with every fiber of my being.

When I was diagnosed I was treated with kindness and compassion. My nurse practitioner taught me that, despite my diagnosis, I’d always matter and add special value to the world. That’s why I’m paying it forward, to teach others the same important, life-changing lessons I learned long ago.

It’s what empowers me.

This is a busy time in the world of MS, one with new treatments, research, MS organizations, websites, legislation, articles, books, blogs, patient-centered forums — the list goes on. This growing amount of information can contribute to feelings of confusion or helplessness for many patients.  

With an ever-increasing number of patients being diagnosed each year, that means my job grows exponentially.

Thirty years ago there wasn’t much to report except the promise of a disease-modifying medication. Today the challenge is to keep up with what’s new. It’s certainly a welcome challenge. We have more and more choices and options in MS care, and that is a dream come true.

So, here I am, a writer and patient advocate who is excited to write for Multiple Sclerosis News Today. I’ve been an admirer of theirs for a while, and now I’m proud to be a contributor. I look forward to engaging with you as I share what I hope will be valuable, honest and compassionate reporting for everyone. You all matter and you add great value to the world.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

6 comments

  1. Steve Johns says:

    It’s great that you have found a positive role for yourself and I’m sure many readers will appreciate it and I don’t want to poor cold water on it BUT, I would like to add a note of caution here. I have Primary Progressive MS and there are no disease modifying treatments available for that here in Australia. Ocrelizumab is being fast tracked for treatment of PPMS and SPMS in the US but the TGA here will not consider it until and unless the manufacturer applies and they are not interested at preset. Therefore you need to consider that some MS sufferers are not able to share in your enthusiasm and optimism so you need to be aware that a significant percentage of your readers feel that they have been ignored, or worse, excluded. I was recently involved in a trial of Fingolimod. It was approved for other ‘flavours’ of MS in early 2008 but PPMS (10% of the ‘market’)had been kept out of those trials so that Novartis could wait a few years then trial it for PPMS and if successful claim a new application and so extend their patent for about 8 years. The point is some in the MS community may be more depressed when someone enthuses about the treatment advances that are available when that is not happening for them.
    I would also like to point out that there is a wide spectrum of severity in depression and there is no ‘one size fits all’ solution. People need to understand this when giving advice. For some it can be relatively easy to adjust their thinking and that is all that is needed. I have been “counselling” a friend who’s thinking and actions were consistent with depression. He was very resistant to seeking help or medication. Finally I said “Mate, as I’ve said before, the drugs can help and everyone wants to help you but there’’s only one person who can sort this out, you. You’ve got a lovely family but everyone’s got a braking point. Don’t leave it until you come home to an empty house and a note on the table.” He snapped out of it. He was at the minor end of the spectrum. I have been depressed and suicidal for over 40 years and on medication for 20. It ended up costing me my marriage, my dream job and my farm. I am further along the scale. There is no way that someone with my level of severity or worse can just snap out of it. I have finally been able to learn how to apply the methodology of CBT, combined with medication, to manage it. Some are not that lucky.

    Anyone giving advice must always be careful to stress that your solutions are what works for you or you may well be adding to someone else’s problem with low self esteem.

  2. jojo jones says:

    I think Steve is spot on. No offense to Cathy, but I for one am not a depressed person, I have a depressing disease. I will continue to be depressed as long as I have the disease. Make me better, end the disease. Then I will not be depressed, until that time I will not be happy and upbeat. Sorry.

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