DO I HAVE ALS ?
The two most common questions ask by new suspecting ALS patients are, do I have ALS and the other is what should I do? Do I have ALS is a difficult question to answer. One visit to your neurologist will not be conclusive. He will tap on your knee, push down on your elbows, perhaps administer or schedule a couple of tests and will still not give you definitive answers. Come back in three to six months or go to a different recommended neurologist that will do about the same thing, with no better results. After a year of two of disease progression the neurologist will conclude that you probably have ALS. There is one drug, Rilutek, it is very expensive and may extend your life by six months. He can prescribe it for you if you want.
What should I do is a much easier question to answer. One thing is that bucket list, if you can afford it; take that trip or adventure you have always wanted to do. Make contact with relatives and old friends that you haven’t heard from in too long of a time. Make your home as accessible as possible, ramps, rails etc. Straighten out your legal choices and investments. Make final arrangements, your pastor, family members and funeral director can all be involved.
Next, FIGHT THE GOOD FIGHT. You are the best advocate you have. ALS will wear down and decrease your physically capabilities and if you let it ALS will emotionally weaken you. The feeling of hopeless and depression can creep in. Do not depend on your doctors to give you all or the best information. While you have the most energy and hope, get informed and involved in the on going ALS efforts. There are multiple organizations and groups that are searching for the best next choices and how to achieve those goals. A web site search will lead you to, CLINICAL TRIALS. Gov, ALS Association, ALS UNTANGLED, local support groups and smaller advocate groups like ALSTUN. Large and small, staffed professionally or with volunteers they are not competing groups, however they are not well organized enough to present a unified effort. And they all need funding and volunteer support to carry on most effectively.
Given that doctors have very limited treatment options the FDA and the pharmaceutical company’s are the biggest players in the game. Different type of research done is being done by different companies and institutions. Kansas State University, Neuralutis Pharmaceutical and Cyterkentics Pharmaceutical are currently involved in drug trials and or research. Stem Cell research is on going at Mayo and Emory. I am sure there are others that I have not mentioned or aware of.
A common goal for all of these advocacy groups and companies is to convince the FDA to more rapidly approve these multiple treatment options. All of these efforts need your support. Finding and supporting these efforts is the answer to the question, What should I do? Finance, political pressure and awareness through social media outlets are all opportunities. Your activism and efforts represent the greatness opportunities.
Randy Bergs