PatientsLikeMe Newsletter Issue 32 - February 2010

MONTHLY MUSINGS

Ever wonder how the data you're sharing on PatientsLikeMe is shaping the future of medicine?  Hear it straight from Co-Founder Jamie Heywood. His powerful video presentation from the TEDMED Conference, called "The Big Idea My Brother Inspired," takes you on a journey from the company's earliest days to the groundbreaking learning happening today.

In his talk, Jamie mentions our Lithium & ALS Study and how our ALS community has been at the forefront, both in picking up news of the Italian study early and conducting our own patient-led trial. Although we found that the drug had no impact on the progression of ALS, that hasn't stopped our collective learning and data sharing. At any given time, you'll find patients sharing about stem cell treatment, drugs in clinical trials such as Ceftriaxone, brain-computer interface technology and much more.

There are so many important discoveries happening around the world, and there's no better place to be a part of them than at PatientsLikeMe. What have you learned that everyone with ALS needs to know? Share it with us today - and keep "the big idea" behind PatientsLikeMe going.

--Emma Willey, Community Manager

JOIN THE CONVERSATION

Check out some of the hot topics in the forum. Then jump in with your own questions and answers!

What you need to know when you're about to be vented
If you've had a tracheotomy, share your words of wisdom for the benefit of a member who's about to undergo the procedure. What are your tips for the first few months?

A year of equipment, devices and home modifications
Don't miss this ongoing thread showing all of the equipment, devices and home modifications used by one ALS family. Learn the benefits, complexity and costs of each.

Are you still lurking? Introduce yourself!
If you haven't posted in the forum yet, our long-running "Introduce Yourself" thread is one of the best places to break the ice and share a little bit about yourself.

Mounted cameras for power chair and scooter users
Like to shoot while scooting? Chime in about the best ways to mount a camera on your power chair or scooter. Also, discuss what other devices might enhance your control.

GETTING TO KNOW YOUR PALS

At PatientsLikeMe, we believe in getting to know the person, not just the "patient." That's why we interview PALS each month to find out more about how they approach life. This month we are pleased to feature akita, a three-star member from Perth, Australia.

1. What's on your mind these days?

What has always been on my mind...to find a cure. I'm not happy with stabilization or slowing ALS down. My whole purpose and intent is to cure and reverse to the best of my ability what this illness has brought into and out of my life.

2. What do you enjoy most about winter?

It's actually summer right now in Australia. However, what I love about winter is that it's wonderful to be at home, comfortable and warm doing my research unimpeded while everyone else has to go to work in the cold. So, from that aspect, ALS is handy. LOL.

3. How do you keep perspective with your condition?

Two things. Firstly, I wasn't born with this, meaning it developed. Secondly, and as an adjunct to the first premise, something triggered the decline and deterioration. How or why does a healthy, happy, successful 34-year-old man for no logical "medical" reason start to have his motor neurons selectively die? It makes no sense.

I hate all this talk about genetics and DNA or glutamate and stem cells. DNA does not initiate, it expresses. Why does someone get ALS now, not later or prior? Glutamate toxicity is the end result of neural death and a contributor to the ALS cascade but not the cause. This can be evidenced by the inability of antioxidants to arrest disease progression.

Stem cells will suffer the same fate as the originals until cause is removed. If your fish (neurons) are dying from bad water (toxins, microbes, etc), you clean the water first, you don't replace the fish. My theory from observation is that there are different triggers for different people. So for someone it may be physical trauma, for another an environmental toxin or detrimental organism, etc. Motor neuron death originates and progresses differently for everyone, based on say, level of infection, how compromised the immune system is or liver health.

Personally, all accounts seem to point to the latter. A latent dormant organism and a possible breach of the blood-brain barrier combined with some unlucky event with toxin assault and/or immuno-compromization resulted in the cascade with ALS. These are just my views supported only by my observation and of others with ALS, what they are taking, what's not working and fringe research.

My current protocol is solely anti-organism and liver renewal, and preliminary results seem promising. I am slowly regaining function, albeit slowly. Nevertheless, I would rather have slow improvement over slow deterioration any day. I am recording videos monthly of different functions (walking, arms, speech, getting up off the floor) to catalogue results. However, I have to see continuous improvement over many months to justify this protocol. If successful after six months, I will release the videos on YouTube and share the protocol so people can choose to do with it as they please.

4. Share why you decided to make your profile public

As explained above, my intent was always to cure this ridiculous disease. Thus if I succeeded, my efforts would be catalogued and someone else could learn from it. Likewise if I fail, the same applies.

Thanks for the opportunity to share my experience. I in no way wish to give false hope to anyone. I am only expressing my journey and philosophy. In this, if it helps someone to fight a bit longer and with more tenacity, then some good has come of my effort.

Finally, I would like to thank everyone involved with PatientsLikeMe for making this ingenious medium available as a centre point for people with ALS to compare their efforts.

WHAT'S NEW AT PATIENTSLIKEME

• Today, PatientsLikeMe announced the acquisition of ReliefInsite, a pioneering online pain management company. More than 20,000 of the patients across our communities report experiencing pain, and we want to help you manage that pain more effectively. Over time, we'll be integrating ReliefInsite's technology to help you do just that. For more details about the acquisition, check out our press release

• Know someone with epilepsy? Last month, we officially opened the doors to our new Epilepsy Community at PatientsLikeMe. Read all about it in our press release and don't forget to invite anyone you know with epilepsy to join us today.

• Another year, another great round of publicity. In addition to all the recent buzz around Jamie Heywood's TEDMED video, PatientsLikeMe was featured last week in TIME magazine ("Group Therapy"). We also hit the airwaves when Co-Founder Ben Heywood gave a special interview on MyGreadKid Radio (WAAM 1600).

• Got a disease-related walk or run event coming up this spring? PatientsLikeMe will sponsor you! Check out our new webpage about the program and sign up today to have us outfit and sponsor your team. (For those who participated last year, we've given our walk/run sponsorship program a snazzy new name and logo - PatientsLikeMe in Motion). Put your team in motion today!

• Whether you are walking at a charity event or not, we know many of you have asked for tools to help you spread the word about PatientsLikeMe. Fortunately, new 2010 Tell the World flyers are now available for download at the Tell the World page (bookmark it!). Hand them out at your walk/run events, support group meetings and more. And if you're ready to go 2.0 in your efforts, we also offer PowerPoint slidedecks about PatientsLikeMe. A big thanks to all of you for telling the world who we are - and what we're trying to do.

THIS MONTH'S SITE IMPROVEMENTS

We are constantly working to improve our site. In this section, we'll keep you up-to-date on new tools and features designed to make your PatientsLikeMe experience even better.

Here are our top functionality enhancements for February:

• Want to dig deeper into someone's past treatments? You can now view another member's treatment history by clicking on the treatment graph in their profile. As long as that particular treatment is not private, you'll be able to see the member's full history and experience with the treatment.

• Feed your profile with precision. We've now made it easier to find information on the feeds that appear on your Profile page. Click "Feeds" to see your latest updates, what your subscriptions are and who is subscribed to those updates. You can also see different views of your feeds (i.e. all, members, forum, treatments, your own.)

• Like our PatientsLikeMe Picks feature?  Well, it's even better now. We've combined it with the Forum Spotlight section, which means there are even more "don't miss" posts for your perusing pleasure. Find out which topics really grabbed our staff - not to mention our members.

• If you are the caregiver of a child under the age of 13, you can now create a profile for him or her at PatientsLikeMe. Here's how: enter the child's correct date of birth when creating the profile, and we will then ask you to confirm that you are an eligible caregiver. If you say yes, you'll be allowed to save the date of birth and corresponding profile.

• Get ready to chart a new path. Thanks to your suggestions, we are looking to make some major upgrades to PatientsLikeMe's profile charts. A number of improvements are being piloted in the ALS Community now, and once we test and refine them, we hope to roll them out to our other communities soon. Learn more about our new charting functionality in Co-Founder Jeff Cole's recent blog entry.

 

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