Frequently Asked Questions
What is ALS?
Amyotrophic Lateral Sclerosis (ALS), is a neurological (nervous system) disease that belongs to a group of disorders known as motor neuron diseases. It’s a progressive disease, attacking nerve cells that control the muscles. When these cells die, voluntary muscle control and movement are lost. This leads to progressive weakness and disability. In most cases, the mind remains sharp.
Where have I heard of ALS?
Older folks remember the legendary baseball player Lou Gehrig, who contracted ALS. It’s sometimes even called Lou Gehrig’s. Others will remember the Ice Bucket Challenge, which raised millions for research. Folks were dumping icy water on their heads in fund-raising videos. Those funds never trickled down to the clinics, for patient care, but stayed, instead, at the research level.
What's the cure for ALS?
It hurts us a lot to say there is no cure at this time. There are some drugs which help manage the symptoms. Your local ALS clinic is always on top of the latest developments in research and trials.
Who typically gets ALS?
It’s a weird disease. There is no typical patient. The Greenville Clinic has patients in their 20s, 30s, 40s, 50s … all the way up to the 80s. Researchers are still trying to figure out if environment plays a role.
Is there more than one kind of ALS?
There are two kinds: one that affects your limbs in the early stages, (lumbar) and one that affects your throat and speech (bulbar).
Is ALS contagious? Is it hereditary?
It’s definitely NOT contagious. A tiny percentage of patients carry a gene for hereditary ALS. For most patients, however, it’s completely random.
What do ALS patients need most?
Love, support and faith. And remember: the mind is not affected by ALS, nor is the hearing! Treat ALS patients like you did before the diagnosis. Watch to see what may be causing a struggle and offer up a solution, or make them feel less self-conscious about it. No one likes to struggle, and not everyone likes to ask for help. Hopefully your friend or family member can be open with you or someone about their needs, but anticipating those needs is always a good idea.
What can patients and immediate family expect?
It’s normal to be shocked, depressed, angry, or all three, at diagnosis and even beyond. It’s said that grief has five stages and if your family has been touched by ALS, you will go through them all. You are, after all, grieving the sudden loss of your life as it has been until now. The main thing to expect is a lot of change. Sometimes it comes quickly, sometimes it doesn’t. But it’s not uncommon to solve one problem, only to have it replaced by a different challenge. So everyone needs to keep taking deep breaths and work together. This is not a sprint, it’s a relay. Hand off the baton.
Why is this happening to me or someone I care about?
None of us knows what will happen in our lives. We are often left confounded by what lies before us, asking “why me?” or “why now?” These are normal feelings. An ALS diagnosis is a challenging gauntlet to navigate. Lean into your friends, family and church, or decide to make a difference by being the person your ALS connection can lean into. We all play a vital role.
What's an important project I can focus on, one that has positive long term effect for my family?
Identify or collect passwords and keys for everything owned by the patient: phone lock code, computer login, safety deposit box key, Facebook password, Google password, codes to a safe, keys to storage sheds, cars, etc. Don’t forget logins to airlines, timeshares, websites like Ebay or ancestry.com, credit cards, utilities, streaming accounts. This would be a great time to set up a password keeper (app) or put everything into the cloud, or on paper and into a safe. No one is saying the passwords must be shared now… but do start to collect them as speech and writing will become more difficult for the patient. Hey, we ALL need to do this… you’ll just be getting a jump on an important family project.
What about preserving stories and historical facts?
This is another thing that we all need to do, and a serious diagnosis can spur us to do it: some lemonade from lemons. Start to record the special memories or family history that your friend or family member with ALS is aware of. Ask them questions and find a way to record what they say about Great Grandpa or where they grew up or why, exactly, they started collecting arrowheads or taking those annual trips to Newfoundland. Use video, or type into Word, or just write it down the old-fashioned way. You’ll never be sorry you took time for these conversations, and each one will bring up other questions. You’ll wind up with a whole new appreciation of family history, and realize the wealth of stories you have to share, too. If you’re a friend of someone Touched By ALS, recording these stories would be a wonderful gift.
When all this started, I asked myself, ‘Am I going to withdraw from the world, like most people do, or am I going to live?’ I decided I’m going to live – or at least try to live the way I want, with dignity, with courage, with humor, with composure.