FEATURED: Tips for people with MS on being active online

It’s two days after travelling 230km west for MS Ireland’s National Meeting Day in Galway, Ireland. It was a fantastic day, and I learned a lot, but it was just as great being able to share information on how to be interactive when you have a mountain of free time when you’re stuck at home.

Panel Discussion: This session looked at practical ways people with MS keep active in employment (Grace O’Sullivan), through the internet (myself), physical activity (Anne-Marie McDaid, Olympic Gold Paralympic medalist) and through MS Ireland’s work and activities (Mark Mitchell). Trevis Gleason, chef, blogger and MS advocate facilitated this session.

For the benefit of others living with multiple sclerosis, and to use the long list of how to be interactive I had written beforehand, I will add some of the important points right here.

97% of people with MS surveyed went online to check out their symptoms for example before their initial doctor visit.

Most doctors (80%) see patients who have gotten health information from the Internet.

Precaution:
Give yourself the support you deserve. See a doctor if you are not sure about what is happening with you. While there is a lot of great information about MS on the internet, there is just as much bad information. If you are unsure about your symptoms, see a GP or talk to your MS nurse, as the internet is not a substitution for academic, medical information

http://msrrtc.washington.edu/info/factsheets/internet#People%20with%20MS%20Saying

1. Beneficial places to find information about MS:

Ψ   National MS Society websites, which I presume would be the primary place for people who are either just diagnosed or simply want to know more about new medication, or activities their local societies organise

Ψ   Websites sponsored by government, educational institutions, or credible professional organizations are more likely to provide unbiased information than commercial websites

Ψ   Several ways of finding information: you either simply Google ‘multiple sclerosis’ and scroll through the several websites listed; or you can sign up for news via email from several websites relating to MS or set up Google alerts: if you have a Google account, you can receive alerts regarding new MS articles being published online, and when you want to be notified: as it happens, daily or weekly. This way you find up-to-date and relevant information about for example drug treatments that prove valuable, or research results that have just been published online (http://www.google.com/alerts)

Ψ  MedlinePlus: American National Library of Medicine
Ψ  Everydayhealth.com
Ψ  WebMD
Ψ  Mayo Clinic
Ψ  Johns Hopkins
Ψ  MS Trust
These are excellent platforms to start your search about MS from, but they do come with a warning sign that you need to see your own GP or neurologist for medical advice, and that you cannot rely on such websites to give you a definite diagnosis

Ψ   MS International Federation webpage has a fantastic ‘Global Research’ page where you can find the latest research news and you can also sign up to receive emails about the latest MS news, projects and programmes, including news on international research, capacity-building, awareness-raising and advocacy, and recent publications

Ψ   MyMS.org: website which explains MS very well and detailed; they also list a ‘Body & Mind’ section which looks at the body and mind as a whole, in a holistic way, and how you can live knowing you have MS

Ψ   Patient.co.uk: a trusted medical website where you can find proper information about symptoms, illnesses etc.

Ψ   Patientslikeme.com: very valuable website for people just diagnosed with MS as you can add your medication schedule, what tests you have had in the past, your hospital stays, symptoms, illnesses, relapses and you can also write a journal and log your quality of life. This is where you can list how you feel, what symptoms you currently have and so on. You can print all this info and take it to the doctor or your neurologist. The great thing about this website is that you can connect with others who have MS, share stories and tips and you can ask questions in the forum on the website

Ψ  European MS Platform is the umbrella organisation for 38 MS societies from 34 European countries. EMSP represents their interests at the European level and works to achieve its goals of high quality equitable treatment and support for persons with multiple sclerosis throughout Europe.

Ψ   YouTube for videos about MS, Wikipedia, Facebook and other social media websites

Ψ   Health-related websites that host forums about MS make it easier for people who would find it difficult to talk about their own MS or that of someone they know, to open up lines of communication as they can do so anonymously. While these places are no substitutes for mental health therapies, forums can give useful information on MS and how to deal with it from people who have MS themselves

2. Beneficial places to share information about MS:

Ψ  NOTE: Share only health information that comes from multiple and credible websites

Ψ  Social media websites like Facebook and Tumblr, your own personal page or one you have set up dedicated to MS alone. Facebook pages, blogs, Twitter, Tumblr and other social media websites are excellent tools as you can share what you want to, and keep to yourself what you don’t want to share. This means you’re in control of your online connecting with people

Ψ  Twitter is great for posting links of for example news on new medication, research projects etc.

Ψ  Patientslikeme.com, where you can  log your list of medication, your progress, you can blog about it, ask questions in their forum and keep track of your illness

Ψ  Blogs like www.blogger.com or www.Wordpress.com: NOTE: refrain from telling people that your view is the same for every person with MS. MS is different for everyone so generalising too much is not right. Research before writing is key!

Benefits of writing: the social side of interacting with others will be therapeutic for yourself as well as enlightening to others. Avoiding social isolation is very important. You can sign up for online courses, or volunteering activities and generally keep up to date with what is happening in the world today. You can also spread online awareness yourself by advocating, fundraising, organise events, join campaigns or even set up a legacy that will benefit your MS Society when you pass away

3. Non-MS things that can be done online for people living in Ireland:
Ideal for people with reduced mobility, or for someone with chronic pain or severe fatigue:

Ψ   Do your personal banking

Ψ   Grocery shopping

Ψ   Check if your local library has a book ready for you

Ψ   Check county council websites for things related to housing, contacting the planning department, print off forms related to housing, Application Forms for Residents Permits / Visitors Discs / Special Permits etc.

Ψ   Check the Citizen’s Information website to see what grants and benefits you might be able to apply for

4. Precautions:

Ψ   Give yourself the support you deserve. See a doctor if you are not sure about what is happening with you. While there is a lot of great information about MS on the internet, there is just as much bad information. If you are unsure about your symptoms, see a GP or talk to your MS nurse, as the internet is not a substitution for academic, medical information

Ψ   Compare credible websites. Compare the info you find on one credible website with information on other websites to see if it is consistent

Ψ   Ask yourself whether the information or advice seems to contradict what you’ve learned from your doctor. If so, talk to your doctor to clarify the differences in the information

Ψ   Verify health claims that are based on personal testimony through multiple credible sources. Online support groups, forums or blogs are a great way to share experiences and information but should not be considered a trusted source of health and medical advice

Ψ   Look for indications that the information on the webpage is based on research or expert review and not just opinion

Ψ   Review the privacy policy to make sure the website will not share your information with a third party

Ψ   Do not download files from a website unless you know the documents are trustworthy

Ψ   Does it sound too good to be true? Be sceptical of health information that contains claims of a ‘miracle cure’. If it sounds too good to be true, then it probably is.

© WVE and Ireland, MS and Me, 2011-2013. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

12 Comments

  1. Pingback: MS Ireland National Meeting Day 2013 | Ireland, Multiple Sclerosis & Me

  2. likeitiz says:

    Years ago, my hubby saw a grad student at his clinic. She confessed to him that he was the 12th MD she was seeing for her symptoms. But so far no one has been able to explain to her what’s wrong. He sent her for some blood tests, an MRI, did a spinal tap. He told her she had MS. She was relieved to know what it was and that she was not crazy or malingering. It was sad.

    Like

  3. MARY RAY says:

    Great tips. In terms of social support, a US-based (currently US-centric, though English speakers around the world do go on a ‘adopt’ an American city) MS social network to consider: http://www.MyMSTeam.com. Over 7,000 people (as of September 2013) are on this site. It’s only for those living with MS.

    Like

  4. suej says:

    Good post, Billie… as a retired healthcare professional (with MS), I am particularly pleased to see your information under the ‘Precautions’ heading – there is a lot of misinformation and nonsense on the web as well as the credible stuff. And the benefits of interacting with others is very important for a person’s health and wellbeing, admittedly we are all different in our needs but I think it’s great you’ve pointed it out. :)

    Like

    • Billie says:

      Thank you Sue! I moved up the precaution item because there is indeed too much bad info out there.

      In between getting my ‘high probability of MS’ and being diagnosed, I refused to go online and search for anything MS-related. It was difficult because there were 5 weeks in between, but I didn’t wanted to put things in my head that didn’t necessarily apply to me. It’s hard enough hearing what kind of symptoms you might have from your GP or neuro, but reading bad info online… big no-no! :)

      And yes, a lot of people become depressed from being stuck at home, and they don’t always know how beneficial being online can be, so I thought I’d point that out also.

      I’m glad you like the post!

      Like

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