Interacting with other MS patients

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Patients Multiple sclerosis

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• Community manager
Posted on
Good advisor
Hello everyone,

Some MS patients find it difficult to go to meetings/ seminars etc. on MS, because it can be hard to see how the MS affects people so differently. Other patients find it inspiring to see how other patients handle their struggles.
Do you go to events for MS patients and what does it give you?

All the best,

Beginning of the discussion - 04/11/2014

Interacting with other MS patients


Posted on

I have been to a few events. I think I am somewhere in between the two. I can feel very motivated when seeing how well others are coping, even with disabilities. But at the same time I can also become discouraged sometimes from seeing how difficult life can be with MS. So I think it really depends how I am managing myself in the particular moment and the mood I am in. I can't help but feeling like a terrible person sometimes, when I am having a day where I can't look at other MS patients without feeling reminded where this disease is taking me. Is it normal to feel this way? 

Interacting with other MS patients


Posted on

I do find it difficult to see the full range of problems that can happen. I remember the first time I met someone whose speech was badly affected. It really brought me to earth with a bang. On the plus side though He has good weeks when nobody would see a problem. 

Interacting with other MS patients


Posted on
Good advisor

I can certainly see both the pros and cons of interacting with others who have MS, especially as everyone is so different.  Like most people with MS, mine is forever changing - frequently hour by hour and is totally unpredictable.  Although I have not yet physically met any other person with MS, have today become a member of a Neurotherapy Centre in my area, have submitted all of the "paperwork" from my GP and will be having my first "encounter", apart from my initial visit to the centre a few weeks ago, next Wed, which will involve a formal assessment (approximately 45 minutes) with 1 of the Physiotherapists to "plan" a potential program, hopefully using a variety of services i.e. various exercises, equipment etc.  I'm really trying to keep an open mind re: how I may feel about actually meeting/getting to know other people with their particular experiences/problems etc. with their MS and can only hope this will be a positive rather than negative experience - either way, I really feel I need to be as proactive as possible in order to most positively manage my MS and hopefully gain more control/understanding of it. 

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