A little help from your friends

When you are diagnosed with MS, you may feel singled out or isolated. Your life starts to be full of exceptions: things you can't do or have to do differently. But there are thousands of people who are sharing your experience – roughly 55,000 to 75,000 people in Canada have MS.

If you have MS, or if a friend or family member does, there are many support groups you can turn to for advice, to share insights and experiences, and to connect with others who know what you're going through.

A good place to start looking for a support group is our community support database. We can point you to hundreds of support groups around the country for people with MS, caregivers, and family members. Many of these groups are part of the Multiple Sclerosis Society of Canada; you can access a full list of their local groups on their website.

The Internet has become one of the greatest helps for people who feel isolated because of a health condition. There are many Internet-based support groups and other Web-facilitated connections for people affected by MS.

  • Online bulletin boards and forums provide places you can visit and post messages on a variety of topics – you can request information, share experiences, talk about things you like and dislike, meet others like you, and generally reduce your level of stress.
  • Email lists are even more interactive: every time a member of a list sends an email, everyone else on the list receives it, allowing detailed discussions between many parties on any topic that might come to mind.

There are many sites with online bulletin boards, email lists, forums, and similar electronic connections, such as MSWorld. Talk to your local MS support organization to find out about other forums and lists.

All material copyright MediResource Inc. 1996 – 2021. Terms and conditions of use. The contents herein are for informational purposes only. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Source: www.medbroadcast.com/healthfeature/gethealthfeature/MS-and-Your-Support-Network

Just the facts

When something affects your life as strongly as MS does, it's natural to want to know as much as possible about it. Of course, your MS health care team will always know what's the best thing for you as an individual with MS, but there are limits to the time you can spend getting answers from them. In-depth research can help fill in background and guide you on where to ask your health professionals for more information.

You've already found one good source of information right here. Along with these features, we have articles on MS and other conditions and on the medications used to treat them. There is also information on treatment options, questions to ask your doctor, the latest news on MS, and a toll-free information line.

For print resources, the Multiple Sclerosis Society of Canada has a considerable library of information, including print articles and videos as well as a newsletter. The MS International Federation also has a good selection of resources, including publications. Both sites also present information that is immediately available online.

Other sources for information on the Web include:

  • The Consortium of Multiple Sclerosis Centres
  • The National MS Society (US)
  • MSNews Today

Some of these websites are based in the US. They are still useful for information on MS, but it's necessary to bear in mind that pharmaceutical treatment in the US is not entirely the same as in Canada.

All material copyright MediResource Inc. 1996 – 2021. Terms and conditions of use. The contents herein are for informational purposes only. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Source: www.medbroadcast.com/healthfeature/gethealthfeature/MS-and-Your-Support-Network

Living with MS

Multiple sclerosis (MS) is called "multiple" for a reason – it involves many different parts of the body in a variety of ways. And having MS affects many aspects of your life. This means that, when you're being treated for MS, your health care team will consist of several different kinds of people.

A typical MS clinic's care team might include:

  • doctors, for example:
    • neurologists
    • physiatrists (doctors who specialize in physical medicine and rehabilitation)
    • orthopedists
    • urologists
    • gastroenterologists
    • ophtalmologists
  • nurses
  • occupational therapists
  • physical therapists
  • counsellors
  • dietitians
  • speech-language therapists
  • orthotists

A health care team also typically involves family and friends. Having all these people helping out can be both comforting and frightening – comforting because you know you're well taken care of, and frightening to think that it takes so many people to care for a person with MS. But when you think about how many people are involved in the health and happiness even of a perfectly healthy person – family doctors, dentists, optometrists, nurses, various religious or non-religious counsellors – it begins to look a bit more like normal life. And, in fact, many people with MS lead lives mostly like anyone else's.

But it's not always possible for a person with MS to live a life exactly like most people. Fortunately, there is an incredible assortment of devices to help people with MS and others with similar conditions meet the challenges of daily living. Many of these devices are available in your local shopping mall, hardware stores, kitchen supply shops, drug stores, or department stores; others can be bought through hospitals and clinics; and there are companies that sell many of them online. Ask your local MS support group for recommendations.

Some of the things available to make life easier with MS include the following:

  • for around the house: special spring-style scissors, pegboards for easy-access storage, cupboard and closet organizers, revolving or fold-out storage devices, levers for door handles, key holders
  • for the kitchen: jar openers, cutting boards with pegs to hold food in place, built-up utensils for easier gripping, carts
  • for the bathroom: grab bars, toilet safety frames, aids to dexterity, rubber mats, long-handled sponges
  • for the bedroom: aids for putting on socks, dressing sticks and reaching sticks, shoehorns, elastic laces, button hooks

All material copyright MediResource Inc. 1996 – 2021. Terms and conditions of use. The contents herein are for informational purposes only. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Source: www.medbroadcast.com/healthfeature/gethealthfeature/MS-and-Your-Support-Network

National societies

The first and best place to turn for help with MS is a large, well-organized national society dedicated to helping people with MS and their friends and families. In Canada, the national organization is the Multiple Sclerosis Society of Canada. It provides a wide variety of resources, including:

  • information – publications, a library of print articles and videos, and conferences and workshops
  • funding – financial support for services and equipment not covered by government or community agencies
  • support – individual advocacy, counselling and consultation, self-help groups, and recreation and social programs

The Consortium of Multiple Sclerosis Centers is an organization and network for MS care centres and all health care professionals specializing in MS.

There are also other groups that can offer useful information and a connection with people in other countries. The international umbrella group is the Multiple Sclerosis International Foundation (MISF). The Multiple Sclerosis Society of Canada is a member of the MSIF, as are societies in many other countries around the world. The MSIF also provides resources of its own – facts, information, publications, personal stories, online lectures, and links – and it makes much of its information available in several languages.

In the US, the National Multiple Sclerosis Society (NMSS) is the organization to turn to first. The NMSS can also be useful to Canadians as an information resource; it has a considerable amount of information on current research and current news on MS. It is necessary to remember, however, that treatments available in the US may not be the same as those available in Canada.

All material copyright MediResource Inc. 1996 – 2021. Terms and conditions of use. The contents herein are for informational purposes only. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Source: www.medbroadcast.com/healthfeature/gethealthfeature/MS-and-Your-Support-Network