Dr. Gott: Understanding Lou Gehrig's disease

This was a very good, if realistic, summary of ALS aka Lou Gehrig's Disease. As the Director of Communications for the ALS Association Greater New York Chapter I thank you for this. I've linked to it on our Twitter account for others to see. One of the most devastating things about this disease is that people with ALS (PALS) do retain their full mental capacity, which at first is a blessing but later on becomes a real curse. Though along the way we've seen many, many patients so amazing things with their time, including forming tight networks across the web on Social Networking sites. PALS offer so much when they continue to use the web to communicate to the world. At least with current technology PALS can still be very productive even in later stages of the disease. Thanks again. Lon S. Cohen. http://www.als-ny.org

Could there not be some mention of the scientific technology breakthroughs that allow people with ALS to live longer? You can get a feeding tube to allow proper nutrition, use a bi-pap machine to help with breathing - to get breaths out easier, and lastly and possibility most important - get a trache and vent so you can continue to breath.

Also there are numerous technology advancements that allow people with ALS to communicate.

It is antiquated to just say a person with ALS should go home and get their affairs in order. This type of thinking is what has kept ALS a disease that has not treatment and no cure. People should know that what is needed is money for research. This is a very underfunded disease. And it can strike anyone.
Sharon Caruthers - diagnosed 12/13/07

This is a very good clinical definition of ALS but really does not tell you anything since the course can take from 3 months to over 20 years to occur. It also does not account for the intestinal fortitude of the person who can and does often times choose to fight and continue to contribute to their community. It has been nearly 16 years (nearly 12 of those on a ventilator) since I was told to go home and plan my funeral at age 26. Since that day, I have been married going on 15 years; had three daughters; written and published many articles; and just finished my second year of graduate school at the University of Michigan-Dearborn. ALS is an incredibly difficult disease to cope with but the medical community needs to stop defining life in it's definition of Lou Gehrig's Disease.

ALS/Lou Gehrig's disease- needs awareness and recognition in order for it to get the much needed attention that the patients deserve. There is a cure, we just haven't found it yet. There is also things we can do to stay alive while we wait. Power chairs, Feeding tube, Bipap, and Trache/vent (breathing). Until treatment is found.

With support, the right doctors who care enough to take it further, the right care team ALS patients learn to live with their disability and enjoy life much longer then you painted in this picture. I wish you had spent more time in explaining that and the tremendous strides in recent data obtained from research. Such as the gene discovered which allows pts to live longer then others which will eventually help us understand how and perhaps to reproduce that gene or charateristic. Money is needed for more research. Those are the things we want people to know. Anyone can site statistics, and today any moron can google ALS and pretty much learn what you have typed. Tell people what they can't find out, what is posible not the doom and grim, because there is some very positive happenings with ALS. Of course you don't live with ALS 365 days a year 24 hours a day nor watch the faculations that you call twitching, Another thing ALS does, it points out very quickly which doctors to dstay away from and which ones to trust. We have to educate every doctor and nurse that comes in contact with us, because you all really know nothing about it except the doom and gloom tought in medical or nirsing school. Drives me crazy we have to be our own experts. You want to talk to experts go to WWW.patientslikeme.com and you will find experts and folks living everyday with ALS.

There are a small number of people who survive ALS, Steven Hawkins being the most notable case. I personally know 3 who have, albeit that they in poor physical condition. While this glimmer of hope is very dim, it is important that the medical profession recognises this fact and tells patients of this (albeit remote) possibility. Mayo clinic actually released a paper a couple of years ago asking neurologists to stop putting people down as misdiagnosis when they found people who were surviving. I personally have ALS, so am acutely aware of the inevitability of people going home and dying when they are told by there doctors that this is the only possibility.

Dear Doctor,

You have most of the anatomical facts correct but your analysis of the disease is way off the mark for most of us who have ALS.

You are quoting from an antiquated article when you write, "One of the crueler aspects of ALS is that the sufferers' cognitive abilities normally remain intact, leaving them fully aware of the devastating changes affecting their bodies They are fully aware of the situation but are physically unable to do anything about it."

This reference to what has been called "locked in syndrome" has been drastically altered by the use of computers which can function with as little as an eyebrow twitch or even a thought process.

With the use of ventilators and a feeding tube, people with ALS people (called pALS) can live much longer. With the aid of computers we are fully functioning, mentally aware, loving human beings.

Your article is straight out of the last century. Please join us pALS on the websiite www.patientslikeme.com to learn more about ALS in 2009.

respectfully,
Tessa Dimim, pALS

"Dr. Gott: Understanding Lou Gehrig's disease"

The title should have been "Dr. Gott: A total misunderstand of Lou Gehrig's disease" I cannot believe in this day and age a doctor would make such comments. I can only imagine you are still "bleeding" patients for their disorders.
Wake up Dr. Gott and smell the coffee brewing!

Wake up Sr. Gott . Like others have said you have a total misunderstanding of Luu Gehrig's Disease.
Your article is straight out of the last century. Please join us Pals on the website www.patientslikeme.com to learn more about people living with ALS.
I have lived with ALS for 10 years. I have gone to local ALS support meetings and have hundreds of friends living with ALS from 5,10,15 even 30 years ! ALS is not fatal . It's a disability. we can live long full happy lives while living with ALS !
There will be a cure someday soon !
In th mean time Rilutek drug slows progression, Bi-pap,Feeding tubes, Keeping lungs healthy, Vital, Stim,Diaphragm packing, Trach/Vent and more to help us have good quality of life !
Alley_FL DX 2000 Living with ALS !

Als can be solved by using holistic and mind body methods.

It develops when factors in a person's life come together to create it.

By changing what is going on with those factors a person can change what it going on with that person's health.

I too have ALS and was told I would die in 2-5 years. True, I was dx just in December 2008 but have had symptoms for several years. It's time for the medical community to quit putting a death sentence on everyone who has this disease as some of us are slow progressors and/or others can extend their lives greatly by noninvasive and ventilation support. This is the 21st Century, Dr. Gott, and there is the technology to overcome much of the disabilities with this disease.