I founded the Carnival of MS Bloggers in 2007 to connect the growing MS Blogging Community. My vision was to become the central hub where bloggers could find each other and to feature a collection of independent patient voices.

As larger MS organizations have also begun to feature patient voices on their own websites in recent years, the Carnival of MS Bloggers is no longer the single driving force in serving this wonderful community. For that we should all be grateful.

Thank you for continuing to support me in this one-person labor of love over the years. As of now, I will be taking a break from hosting the Carnival of MS Bloggers.

Please feel free to continue to email me to alert me to new MS blogs to add to the comprehensive MS Blogging Community index.

Sincerely,
Lisa Emrich

Thursday, January 29, 2009

Carnival of MS Bloggers #28 - Internet Forum Edition

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Forums and Message Boards for the Chronically Ill

Many readers are aware that I participate in various MS communities online and am somewhat skeptical of the quality of information and support which is often given. You may also be aware that I try to keep up on research related to multiple sclerosis and share some of that with readers.

As important it is to know 'how' to read the latest news or announcements of medical advancements and clinical trials, it is equally important to know how to find credible, reliable objective health information on the internet.

Something which we don't often think about is the quality of the online communities in which we choose to participate. Some are moderated and require that every post be approved by a human, but some have little to no moderation in place. Then there are the forums which are designed to collect and analyze patient data and behavior- see "what can happen when patients have access to one another's data."

This Carnival edition is meant to focus on the drawbacks and dangers of online forums for patients, not to highlight the benefits. We will need to feature the positives in a future collection of posts. First, the bullies.


by kmilyun
The first open use cyber-bulletin board I remember using was way back when (hear my bones creaking here) . . . a Prodigy one that was accessible via a V.22 1200 bps modem. It had a simple menu with four items and you had to wait a day for any reply to be posted. It posted on a board for recovering alcoholics. And, here is the point, there were “trolls” and “bullies” then and there are “trolls” and “bullies” now. They just have more available means and mediums to flourish in.
Recently I have joined a few multiple sclerosis forums. I don’t post - I lurk. Why? I do not choose to hang myself out there and be annoyed by the trolls and bullies. I have learned a lot reading through the posts. Some forums are better moderated than others and I have to apply some common sense in distinguishing the facts from the B.S.

Just remember you are never as anonymous as you hope online and words do hurt and there are alligators out there waiting to snap.

Cyberchondria has been on the mind of Nina lately.

There have been a few articles over the last couple weeks on how people are using the internet in relation to health issues. Microsoft published a research study. The results are interesting:
Our results show that Web search engines have the potential to escalate medical concerns. We show that escalation is influenced by the amount and distribution of medical content viewed by users, the presence of escalatory terminology in pages visited, and a user’s predisposition to escalate versus to seek more reasonable explanations for ailments. We also demonstrate the persistence of post-session anxiety following escalations and the effect that such anxieties can have on interrupting user’s activities across multiple sessions. Our findings underscore the potential costs and challenges of cyberchondria and suggest actionable design implications that hold opportunity for improving the search and navigation experience for people turning to the Web to interpret common symptoms.
The research has been getting some media attention from NY Times and Guardian.
I agree and disagree with it. I don’t believe I escalate my symptoms. I educate myself on what I am experiencing, but not in an unhealthy way. I do think I am probably on the abnormal side of the fence though. From reading message boards on MS, I totally see this happening on a regular basis. Heck, Tom had an eye twitch and he thought he had brain cancer. It happens everywhere.

I know that doctors are recommending people not read about their condition on the internet. My doctor warned me and agreed with my opinion of MS message boards. There are a lot of people that get some tingly feet and think its MS. There is a long jump from tingly feet and MS. Maybe if I did escalate my symptoms I would have found out about the MS 3-4 years ago.

Which brings up an interesting point… would I have made different choices if I know about MS 4 years ago? I think I would have which scares me a bit.

~~~~~~~
Finally, Rebecca says that for those with MS "internet discussion boards and chatrooms are usually a bad deal."

Unfortunately, for those with MS [ed. some of us], the use of Internet discussion boards and chatrooms is usually not a good idea. One exception is looking at these boards and chatrooms as a way to possibly uncover the side effects of medications and treatments. For example, some of the drugs for MS cause hair loss, yet this is often not mentioned by doctors or pharmaceutical companies. Other than using the boards and chatrooms to find information on side effects, the boards and chatrooms are of limited value and can even lead to unwise and unhealthy decisions.
These problems occur in part because the online discussions are often frequented and even controlled by those who, because of psychological problems, are only imagining they have MS. Problems also occur when fake doctors find their way to these discussions, when sellers of quack cures are looking to make a quick buck, when hustlers prey on the natural sympathies most of us have, because group members sometimes encourage others to engage in unhealthy behavior and because the knowledge of group members is often dangerously limited.
The problem with control of discussions by individuals who do not have MS occurs because some individuals with psychological problems seek attention by faking MS symptoms. Such individuals have often been told by their doctors and neurologists that they do not have MS but these individuals will often persist in saying that they have “probable MS”.
Such individuals are not necessarily easy to identify in Internet discussion groups. Often they will come off a charming and supportive–at least until they are no longer the center of attention. The advice they give, however, is usually poor. Because they seek drama, they encourage others to have dramatic treatments. Why take an aspirin when a chemo drug may be thrown at a problem? These MS fakers do resort to bullying to get their way. Unfortunately, bullying is common in Internet discussions.
Other fakers in discussion groups include fake doctors. These individuals will call themselves doctors but they are not medical doctors and have limited knowledge of multiple sclerosis. Just because someone calls himself or herself a doctor, does not mean he or she is actually a medical doctor. The person may have a mail order PhD degree or some other degree actually requiring little training.
The fake doctors may be looking to make money off of desperate MS patients. After they have participated for a short period of time, they may offer a miracle cure for sale. Or they may encourage discussion participants to use their services.
Others also participate with an eye to quick profits. It is not uncommon to see hustlers trying to sell various miracle juices or supplements that supposedly cure MS. Or a more sophisticated ruse is to build a web site, sell advertising based on the web site and then use discussion groups to generate visits to the site. In this case, page views at the web site add up to additional advertising dollars.
Finally, there are those who try to get money out of others without offering anything other than a good sob story. While many with MS are impoverished, a wary attitude towards those requesting money from other members of discussion groups is appropriate. Some of those requesting money do not even have MS and should be out looking for a job.
Another group of problematic individuals active in Internet discussions are individuals with addictions–usually alcohol, drug or food related. These individuals are problematic because they will tell newcomers that factors such as drinking alcohol or diet do not matter even though doctors treating patients with MS know different. For example, doctors know it is difficult to cope with both obesity or malnutrition and MS. Diet matters.
Finally, there are individuals who are honest, loving and caring but who have such limited knowledge that their input is often not helpful. For example, one patient in a discussion group described symptoms that sounded like a heart attack but another person said these symptoms sound like MS and suggested that the person with the chest pain rest. The person with the chest pain should have been advised to see a doctor immediately.
It is important to remember that Internet discussions cannot replace face-to-face contact with others and real social support. If you feel lonely and socially isolated because of MS, call your MS society and ask for advice on how you can break out this loneliness. Or call a church and other group you trust and ask for help. Maybe a change in jobs or housing is needed so it is easier to maintain contacts with others and develop new friends.
Also, if you do feel lonely, promise yourself that you will do something to break out of isolation. Unfortunately, use of the Internet for more than a limited amount of time increases depression. This is the last thing you need when you are already coping with MS.
Remember, real face-to-face friends make life vibrant, fun and enjoyable. Don’t settle for some largely illusionary friends and lousy advice on the Internet. You deserve better than this.
Also remember that the articles you read on how great Internet discussions are have been carefully placed by businesses trying to make money. These businesses are not going to tell you about the many real problems involved in Internet-based discussions. These businesses are not going to tell you about the MS fakers, the hustlers, the alcoholics, the very obese, or all of the bad advice.
Again, remember, real face-to-face friends make life vibrant, fun and enjoyable. Don’t settle for some largely illusionary friends and lousy advice on the Internet. You deserve better than this.
Please remember to consult your doctors about how to stay as healthy as possible. Nothing here should be interpreted as medical advice. Instead, please use the information you find here in your discussions with your doctor.
Copyright 2008 Rebecca Hoover

This concludes the 28th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on February 12, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Monday, February 9, 2009.

Thank you.
Comments for this post.

Thursday, January 15, 2009

Carnival of MS Bloggers #27

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Meet Herrad

Amsterdam, The Netherlands

Primary Progressive MS diagnosed 2.5 years ago
Blogs at Access Denied-Living with Multiple Sclerosis

~~~~~~~

01.06.2009

The meaning of life is to enjoy it, that's it nothing more and nothing less.

It's easier than you think you have to always remind yourself that there is always more than one perspective, view of any moment.

When you are down it's very difficult to see the beauty that is all around us as it is to be positive.

But it is very important even imperative to be positive

In order to refind the positive try to look at things from various perspectives.

It's quite mechanical at first but it will be until the depression lifts and you can be positive again.

When you start to express yourself fully again and then you can once again see the beauty around you and within yourself.

12.10.2008

Recently been having a lot of very good days, not my body just my mind, luckily the weather has been generally good too, most days blue skies and sun.

Makes me aware again how short life is and that it's the only one we have, don't know about other people but recall worrying so much about things that did not matter as if I had to be perfect and this is a dress rehearsal for life and not the real thing.

Aware too that the MS has progressed faster than we thought it would, wish I were wrong and hope that I am but if it carries on as it has then in another year I won't be able to sit up and eat and talking and breathing independently won't be possible anymore.

Then I shall exercise my right in Dutch law and get my doctor to help me die, it's not something that I look forward to hate the idea of not being here with my darling Richie and all you lovely people.

Richie said that I was getting ready to die which is not entirely correct as I am doing everything to enjoy my life now and what I have which is lots and the last thing that I want is to die.

But I will do the only difference for me its sooner rather than later and won't be a surprise thing.

Really wanted to get really old with my beautiful darling Richie was looking forward to it very much and still am.

My life and my dreams are far from over, intend to really enjoy this Christmas.

~~~~~~~

Day by Day
12.13.2008

I have done well to reclaim my life but only mentally and not physically as I needed a wheelchair for getting about outside right away and within 3 months of diagnosis I could not walk down the steps anymore.

After 4 months was full time in wheelchair and after another 5 months couldn’t get out of the chair anymore and transfer to an ordinary chair or to bed or shower chair and needed help with everything.

Could still write and cook a bit, simple things like like scrambled eggs or stir fry something prepared for me to use and could still use knife and fork and hold a glass or cup in one hand and eat with the other hand.

Had additional stress as we lived on the second floor without a lift so was stuck indoors for about a year only getting out twice a week to rehab when I was carried down the steps by the men from the mobility bus and their scary chair.

Sadly by the time we moved a year after diagnosis could not go out on my own as my hands could no longer function very well, could not use a key or open doors or even my purse.

I needed help with everything but could still type and pick up things and eat, could do things with both hands by the end of summer a year after diagnosis I had a catheter and could only type with one finger and needed even more help.

Now 2 years and 4 months later I am totally handicapped and need everything done for me.

One good thing now is that I found myself again and no longer feel useless and somehow less of a person and a woman, now I know that I am still the same person still as dynamic as ever and still the same sharpness.

Had to get through a morass of feelings to get here and I have by experiencing all the highs and lows of the last couple of years and thinking things through and refinding my sense of humour.

Now I have reached where I am now which is in a lot of discomfort and pain and in bed all the time because of the nasty pressure sore and can now consciously enjoy everything that I have like Richie and his love and care and a nice flat, friends and our dogs and the fact that I have realized that my body is crap but my mind is fine, in good shape and life is good.

Taking each day one at a time, now look forward to our wedding anniversary on 19 December and then Winter Solstice and Christmas.

11.30.2008

Find it difficult to deal with questions such as:
What does the doctor say?

In my case nothing as they do not know and can not make a prognosis.
Or are you any better?

No and I won't be better.

Or about the wound when do the doctors think it will heal?
They have no idea and say slowly.

It's very worrying to have an illness where doctors can not help me which is weird as we are all brought up to think the doctors can always help.

Just not with something like primary progressive MS then doctors and patients have to gamble.

1.14.2009

Really noticing that my condition is getting worse, I am losing strength for example the muscles in my back are really weak as I have been lying in bed since 21st August.

My back is getting so weak that I find myself slumping forwards after have sat for a wee while in front of the exercise machine plus finding some simple things more difficult these days.

Some days find typing with my one usable finger is really difficult one minute it is ok and then I can't click on anything say open my mail or just sending a mail or copying and pasting or just clicking on a mail to open and read.

And eating is horribly frustrating as I can't sit up enough and eating in a slumped position is difficult plus holding the fork/spoon or cup is often very difficult.

These days I am also in constant discomfort and pain which really wears me down, try my best to remain positive but sometimes it's not easy.

My big problem is that in my desire to remain positive I do not acknowledge what is happening plus in my desire to not only be positive but in order not to burden others with all the details of the progression of the MS I hardly say anything about what is happening.

Really weird way to behave and does not protect anyone, realize too that have been keeping lots to myself so have not talked about the fact that I know that my condition is deteriorating which means that I won't be alive for as long as I had hoped and that is strange to think about and to contemplate dying sooner than had thought and want.

Today has been a reasonable day had a few spasms in my legs one big one when the doctor visited and the the chip off my tooth and the bad news from Richie that I can't do the exercise machine everyday as sitting up in the shower chair has caused soreness and irritation in the skin around the wound.

The shower chair has a cut out bit around the bottom and the edge of the cut out bit has stressed the skin around the wound which is causing blisters and soreness and dry rough skin.

Not good so we will have to be really careful now as the wound is still healing and getting smaller though it is still quite big it's now 4cm.

It is taking a long time for the pressure sore to heal but it is now halfway healed so it's crucial that the progress is maintained.

12.06.2008

A big thank you to all the wonderful people in the US who collected money for me recently which will help me to get an alternating air pressure wheelchair cushion.

They raised 600 us dollars which is brilliant and that will be put towards the 2,900 euros that the cushion costs here.

Thanks for all your support it is very appreciated.

Given me a huge boost and that has helped me to cope with having to be in bed for so long.

Thanks all you wonderful people.
~~~~~~~
Herrad is my Inspiration!!


This concludes the 27th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on January 29, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Monday, January 16, 2009.

Thank you.
Comments for this post.

Thursday, January 1, 2009

Carnival of MS Bloggers #26 - New Year's Edition

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
It Is a New Year. Welcome to 2009.
~~~~~~~


Cloudburst

by
Kelly

A choir of spirits, altos all
Singing a sweet serenade
Glassy and silver, humming, they fall
Darting, they quickly cascade

Crisp amber leaves, glossy gold
under billows of low cast sky
blowing in waves, muddy and cold
casting off drops as they fly

A melody risen of unknown birth
Musicians from mist gathered gray
Heaven sent fingers, playing the earth
Washing my troubles away


Shauna discusses exciting new technology - The Halifax Injector.
I get excited about ordinary things sometimes. An unexpected cup of coffee from a listener on his way to work, an unexpected e-mail from a high school friend, a pleasant note left under my apartment door from a neighbour.

And I get excited when I hear about innovations and developments that occur in my city. This week, the Halifax Injector was finally revealed to the public. A surgical tool, the "device can be programmed by a touch screen to deliver precise quantities of stem cells to very specific areas deep inside the brain".

Over the years, the use of stem cells in the treatment of Parkinson's Disease has increased. Remember when Muhammad Ali had a fetal cell transplant to try and control his PD? We've come a long way since then and the Halifax Injector is another positive step.

You may be wondering about the mention of PD on what is basically an MS blog. First, there is PD on my dad's side of the family, two aunts having suffered and died from it, and a grandfather and an uncle with PD like symptoms (though to the best of my knowledge, they were never diagnosed with it). My mother and I have watched my father over the years for any tell tale symptoms (and I'm happy to say we haven't observed any).

Secondly, this instrument will have applications for drug delivery. Imagine being able to put a drug precisely where it is needed instead of injecting into a leg muscle and waiting for the body's systems to process the drug, losing some efficacy to metabolism.

Thirdly, the Injector was developed by a team of students, doctors, and researchers in fields of engineering, physics, medicine, and computer science. What a combination of minds! One of the students was just beginning his education in a local Community College when he joined the team and I can only imagine the impact his involvement will have on his future job prospects as an electrical engineering technologist.

I know one of the doctors on the team and hope to talk to him in the new year about the implications of this device on other neurological conditions.

Stay tuned!

Toward a New Year's Resolution
Excerpts from Nadja's thought-provoking, must-read post

I have thought long and hard about what changes I would like to make in myself in the coming year. There are a few but I feel that if I really work hard on just one or two that many of the others may fall into place. One thing that MS has really shown me is that each day is a chance to reinvent oneself. Sometimes this is easier said than done and so I like the idea of looking toward the New Year as a clean slate where I can still change my life for the better.

This all leads to my actual resolution. My resolution is to work hard to not allow little things to make me so anxious and overwhelmed. In order to achieve this difficult goal, there are a few things I need to do....

I look at what I have listed and wonder if it is enough or if I need to find something more. I think that these things will hold me for the short term as I work on my resolution but in the long term, I will need to find other things to drive and entertain me. I will continue to seek answers within myself in the coming year even as I work toward my resolution.


This concludes the 26th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on January 15, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Monday, January 12, 2009.

Thank you.
Comments for this post.

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