Poor Man's Guide To ALS Support Message Boards

Someone recently asked me to put together a list of the ALS message board sites that I was aware of. I did so and added some editorial comments which are my personal opinions only. I share them here in case they (probably the sites more than my opinions) may be helpful in any way.

Yahoo Living with ALS Message Board

http://health.groups.yahoo.com/group/living-with-als/

This seems to be a good, reliable source for patient services information. All postings are screened and whoever does the screenings keeps things on track well. It is a simply threaded message board that does its job nicely with an active core of participants. The tone is polite and pleasant. If I were looking for help with the practicalities of dealing with ALS, this would be the first place. Effective trumps high-tech every time.

ALSTDI forum

http://www.als.net/forum/

This has the most active research board that I have seen, and it has some professional adult supervision from ALSTDI in the research area which is very helpful. Rob Goldstein of ALS TDI fields questions for their staff. Relatively few people actually participate actively on this board, but hundreds lurk daily looking for the next big thing.


PatientsLikeMe

http://www.patientslikeme.com/forum

The strength of this site is the empowerment that it gives PALS to self-report their medical data. The forum area is not highly moderated (but there are loose rules that are enforced). It can be a good source of information for those exploring off-label or unapproved treatments. One also has to be aware that opinions can run high there with proponents and opponents of the unproven.

ALSforums

http://www.alsforums.com/

This is highly moderated and used to be very Canadian in content and focus. More recently it has attracted many more participants globally. It's a site that more people seem to be finding, and critical mass is important for any message board to be effective. It now has the critical mass.

MDA Communities

http://www.mda.org/

There are a lot of tools available to people wanting to set up an online presence. The ALS forum area just doesn't seem to have enough critical mass to be the most effective source of information.

ALSA Virtual Advocacy Community

http://als.clinicahealth.com/

Be aware that ALSA staff members do not participate on this site. Many simple questions on that site go unanswered. Traffic appears to be light and it's unfortunate that it can allow patients and others to twist in the wind waiting for some kind of response from someone.


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There are many other sites that can be of help to those trying to deal with ALS. The list above only includes message boards where people can post questions and receive peer responses.

Most ALS organizations have Facebook presences. Until now, those are mostly used for fundraising purposes.

As ALS organizations learn how to use social media to interact more with patients and other constituents, we hope that we can expect more kinds of patient help (both from organizations and from peers) to come closer to where it is easiest for the patients to interact -- online.

And don't forget, as the classic New Yorker cartoon taught us with two dogs at the computer, on the internet, they don't know you're a dog.

If anyone has other thoughts, please chime in. The comments area below is open for business.

Feed The Hungry, Clothe The Naked, And Help Those Dealing With ALS

Global Problem, Global Solution ?

Interesting article...

http://www.eurordis.org/content/democratizing-innovation-rare-disease-research-orphan-drug-development

71 Years Ago Today

Lou Gehrig gave us a lesson in grace and courage, and he gave a terrible disease a name.

Annoy The World Into Paying Attention To ALS

This could just do it. For your next Walk to Defeat ALS, get vuvuzelas on ebay for a few hundred walkers and raise the noise level so that the world will pay attention. I can even see some news cameras wanting to cover people who would do something so outrageous and annoying as to walk through a city or a park making vuvuzela noise. It's so fitting. ALS is outrageous and annoying, too.

Nebulous Optimism Hasn't Cured ALS Yet

From a participant at the ALSA Advocacy Conference in May, 2010 --

Is There A Clue In The Goo

Common sense tells us that we will be paying a huge environmental price for the BP oil mess for decades to come. The health price may not be so obvious.

Is anyone looking at historical data on oil spills and subsequent cases of ALS? Do we have any data on people exposed to the Exxon Valdez aftermath and subsequent Lou Gehrig's Diseaese? Do we have any global reporting that would render clues on oil and water mixing into a deadly trigger for motor neuron disease (amyotrophic lateral sclerosis)? Do the layers of contractors and subcontractors in the many industries related to oil exploration and cleanup make it difficult to track environmental exposures and future health outcomes?

America is an angry nation whose waters have been fouled. Perhaps this is the time to gather some national resolve to figure out ALS and to prevent cleanup workers from paying a horrible price in ten or twenty years for the work they are doing in 2010.

Long After The Hot Air Leaves The Balloons...

...our veterans still have to deal with their serious, service-related disabilities, including ALS.

From the Flag Day Indianapolis Star Letters to the Editor --

Airport Authority disregards needs of disabled veterans
Posted: June 14, 2010
The Indianapolis Airport Authority's decision to eliminate the discount for disabled parking seemed dictatorial in that organizations with a vested interest were not notified or even consulted for input.In Indiana, our legislators authorized a disabled American Veteran license plate. This handicap plate is available for those who have served our country and have been evaluated by the Veterans Administration with a service-connected disability that impairs mobility. These veterans, who gave a part of their body, are now considered a "financial burden." It is a sad state of affairs when the Airport Authority welcomes the return of the men and women in the armed forces with balloons, pomp and ceremonies but then, once they are back, they are quickly forgotten.I hope the members of the Airport Authority are able to sleep at night visualizing a vet in a wheelchair trying to get to a pickup shelter during rain, snow or other extreme weather conditions. Happy dreams.

Mike Whelihan
State adjutant
Disabled American Veterans Department of Indiana
Indianapolis

Why is Sleepy so concerned about the cheesy behavior of the Indianapolis Airport Authority, you ask? First, Sleepy is a proud citizen of Indianapolis, a city that is an outstanding and hospitable place where we like to treat people with respect. Second, ALS is a service-related disability for all veterans who have been diagnosed . Gravity becomes an unbelievable enemy for those dealing with ALS, and travel is difficult beyond most people's wildest imaginations. Why in the world would a world-class city decide to start to save money on the backs of those with ALS by making their travel more difficult or more expensive?

Lou Gehrig's Disease is a pretty crummy fringe benefit of serving your country so that all Americans can travel freely. Our military veterans with ALS should be treated as heroes and not as cash cows for the parking lot.

Thank you, Mr. Whelihan. Thank you, veterans with ALS.

ALS -- The Disease That Is All Q and No A

On Monday the Diane Rehm show on NPR featured a panel talking about the BP oil disaster in the Gulf of Mexico. Panelists talked of liability and the pelicans and fish and engineering and government response. There were lots of questions and some actually had answers.

Then a caller asked a very interesting question. She prefaced her specific question by asking if somebody wasn't looking at the health implications of all of that oil. She said that some years ago she had spent time at the Cleveland Clinic and noticed that there were many people from Saudi Arabia who sought treatment at the ALS program at the Cleveland Clinic. She said that later she was aware of the work done in Kentucky that uncovered the correlation between military service in the first Gulf War and ALS. Those two observation made her wonder about exposure to oil being a possible factor in ALS. Nobody on the panel knew anything about ALS. Good question. Next caller, please.

So another very good question was asked. It's a question that could have huge implications beyond the immediate environmental disaster off of our shores. Will Americans be seeing in increase in ALS in the future? Will there be a BP Clinic for Motor Neurone Disease set up somewhere?

Once again, there are thousands of really good questions regarding ALS. There are no answers. That's scary.

My ALS Rage Boileth Over

Sleepy has a case of ALS rage. It started 13 years ago after I had been asked to pick up some liquid Centrum for a loved one with ALS since she read that vitamin E might be helpful. Later that same day I read in Lou Gehrig's biography that Eleanor Gehrig used to pick a certain type of greens in Central Park because they were high in vitamin E which was thought to be helpful with ALS. Over half a century later and we were still grasping at an unproven vitamin E theory. That did it. ALS rage has been a part of my life since.

Normally the rage can be channeled into very constructive activities related to awareness and advocacy.

Occasionally something hits my ALS rage button particularly hard, and the rage boils over. Today is such a day.

Take a look at these old digests. They're from a listserve that was a wonderful support mechanism 10-15 years ago. The cast of characters has changed for the most part, but the roles and theories and claims and questions are horribly similar to today's. Change the dates and much of this content could have happened yesterday.

http://home.earthlink.net/~jakesan/pages/alsdig.html

People with ALS have no good choices, so they do their best. Unfortunately we have failed to offer them better choices in the 70 years since Lou Gehrig was diagnosed and in the 70 years before that when the disease was first identified.

Patients hang their hats on hope and sometimes listen to what they want to hear.

http://www.rideforlife.com/archives/001149.html

http://www.rideforlife.com/news/stem_cell_research/als_patient_dies_after_chinese_stem_cell_surgery.html

Over the years they have sometimes viewed the drug they can't have as the next big thing.

http://www.accessmylibrary.com/article-1G1-53449780/cephalon-may-pull-plug.html

There were no good answers for ALS 140 years ago. There were no good answers for ALS 70 years ago. There were no good answers for ALS 13 years ago. There are no good answers for ALS today.

Perhaps we need to spread a little ALS rage and channel it into some global resolve to finally provide some good answers to patients so that they can have some hope that doesn't require them to roll such cruel dice.

The Ticking Clock Can Cause A Dilbertian Perspective on ALS Research

People with ALS live with a terrible ticking clock. They play out their lives like an ultimate game of speed chess.

It can change one's perspective on efficient use of time and the best processes for discovering and approving treatments. We all have to acknowledge that what we have been doing for the last century has failed to develop a cure (or even an effective treatment) for Lou Gehrig's Disease.

I'll bet more than a few people with ALS rolled their eyes when they read Dilbert this morning.

ALS Awareness Isn't Working

Would someone call a company Heart Attack Enterprises?
Would someone call a company Gastric Reflux Enterprises?
Would someone call a company Urticaria Enterprises?

http://www.startribune.com/sports/outdoors/94639959.html?elr=KArksLckD8EQDUoaEyqyP4O:DW3ckUiD3aPc:_Yyc:aUUsZ