Keeping You in Control
Issue 1: July 2006
Introducing MainStay:
Welcome to the first issue of MainStay, a newsletter that will endeavour to bring you strategies, hints and tips for living a positive, productive and meaningful life with Multiple Sclerosis.
After 14 years of living with MS I have experienced many of the challenges that the condition can present. I have also worked closely with the support services for people with MS, serving three years as a director for MS Australia and a further two years as their General Manager Corporate Affairs.
MainStay is focused on assisting people living with MS offering everyday strategies that will enhance their quality of life while waiting for the cure.
In this newsletter we look at strategies for dealing with diagnosis and the early stages of multiple sclerosis. The content of this publication does not include medical information – for this, please speak to your doctor.
Medical:
After diagnoses your neurologist will recommend a first line of therapeutic treatment. Today, unlike a decade ago, neurologists have a number of options available for treating MS. All treatments have some side effects, which in most cases are transient.
The pharmaceutical firms who manufacture these treatments provide various levels of support services. These range from making use of the MS Society’s existing services through to offering you your own trained MS nurse who will meet with you in your home for education, support and instruction how to use the medication and manage possible side effects. Your neurologist should be aware of these various support services and what they offer.
Normally your interaction with the neurologist becomes one of maintenance from this point on. Having regular periodic consultations to remain in control is advisable. Your neurologist will bring the vital clinical elements and treatment together for you. However I recommend you source the appropriate professional for your emotional needs.
Emotional:
This is an area that must be dealt with carefully. For men in particular, sharing their feelings does not come easy. Diagnoses at times can create enormous feelings of helplessness, anger and disappointment, combined with the pressure of worrying how you will cope with your family commitments, relationships and maybe your career.
Just as you would phone a mechanic to service or repair your car, you can seek the counsel of a professional neurophysiologist. These people specialise in this area of depression. They can provide you with helpful strategies for dealing with your feelings.
Too many people choose to do it alone. In many cases this burden ultimately falls on the shoulders of your loved ones. Often they are too close to be constructive in their advice and most likely are not trained professionally to deal with such complex feelings. Don’t burden family and loved ones with your entire emotional luggage, leave that with professionals who can provide open, honest and practical strategies for dealing with your concerns. Keep your time with family and friends to talk about the positive and happy elements in life. It is a good idea to separate the two.
Practical:
There are a number of support groups to help you through the challenges on a day-to-day basis. It is strongly advised that you seek out an occupational therapist (OT). They will have dealt with most of your concerns many times over. Because this is their specialty, they can provide you with easy to understand solutions for most of your needs.
You can engage the services of an OT through a private practice although a specialised organisation like the MS Society provides an excellent holistic support service. Check with your local MS Society if they provide access to an OT or can advise you of a reputable practicing OT in your area.
Personal:
It is easy to let MS run your life. It is a permanent shadow and this can lead to everything being based around MS. MS is not a life you would have chosen, however it is the only life you have. There are about one billion people globally who would swap lives with you in a flash. This is not to play down the challenges associated with MS, moreover highlighting that as individuals we must focus on what we have.
Plan your time to share positive, happy fun moments with your family and friends. Do not let MS stop you from doing things you want to do. Sure, in many cases you may need to modify how, but do not dismiss your desire to do and achieve things.
Even the great Phar Lap won the Melbourne Cup with a handicap. MS is just a handicap, you don’t have to win the race just pace yourself and remember that in life it’s not how you start the race but more so how you finish. You may have MS but MS does not have to have you!
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