Multiple Sclerosis (MS) is three times more prevalent in women than in men. Signs and symptoms vary immensely among People with MS (PwMS) to such an extent that it has been said that no two PwMS are exactly the same.
Some men never open up about their MS problems but others are more comfortable doing so and some of the aforesaid men feel more comfortable opening up amongst other men. With this in mind the Southern Branch of MS Ireland instituted MS for Men meetings. We meet in the River Lee Hotel in Cork and over non-alcoholic refreshments for a couple of hours three or four times a year we listen to a presentation followed by a Q & A session. We have had presentations on diet and software development for a physiotherapist-monitored home exercise program. Before the meeting ends we usually discuss the options for the next one and recently we opted for a meeting without a presentation or an agenda; just us and whatever we wanted to chat about.
The get together was attended by about 23 men with Carmel and Patricia as facilitators. As you know I blog about MS frequently with some awkward topics appearing in print so I had never considered the difficulty others may have opening up. One of the lads said that in our group we could say things that would otherwise go unsaid while another said that he felt that coming to our meetings was like meeting ‘his people’.
We openly discussed our personal experiences with whatever medication we were taking, the good effects and the side effects, why people had changed or remained on the same medication. We shared information and being armed with the correct information is essential in our efforts to live as full lives as possible. Some of us talked about how we missed the social interaction associated one particular medication which is administered by four-weekly infusions but the daily oral medications available now more than compensates.
Medication or no medication was brought up and then the issue of whether the search for a cure was genuine or being hampered by big-pharma because MS medication is a huge cash-cow; MS being a lifelong disease as long as no cure is found and PwMS have a normal life expectancy. That’s a lot of money for a lot of years. We talked of the importance of honesty when talking to our neurologists and also the importance of discussing any changes to medication regimes as not all medications are compatible or necessary.
We are very fortunate we have a Functional Zone in Leisure World, Bishopstown which is attended by an average of 85 PwMS on a weekly basis. This section of the gym is supervised by a physiotherapist, all the machines are disabled friendly and as we all know exercise is very important. Exercise, activity and tenacity play major roles in our personal MS jigsaws.
We are a band of brothers and we are stronger together.
Should similar groups be available around the country and the globe?
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