Real questions from Teenagers.

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How can you be affected with ALS disease?

Well, you can’t catch it. There are still lots of questions unanswered, but what we do know is that the junction of the nerves die. When that happens, the nerve is not getting to the muscle, which makes it not be able to contract. These specialize nerves are called motor neurons. When they die off, you get the basis of ALS or Motor neuron disease.

How do you find out you have ALS?

It is only by a doctor’s diagnosis, but not just any doctor. It needs to be done by a specialist who knows motor neuron – most always a Neurologist. Some of the ways ALS/MND looks, can be similar to other disorders. So it can often take a few visits to be sure.

Why are the symptoms so chance variable?

Some of that has to do with where the motor neuron death started, and also has to do with who you were before you got ALS. Were you more athletic, exposed to environmental toxin, is this the hereditary form? There is not definitive as to how it will progress, but we do know that different types tend to move a bit quicker than others

If ALS affects the nerves, why do people behave different?

Like with any other disease, it affects people differently. Some people also get  frontotemporal dementia (aka as FTD). Why that is, is still not entirely clear. This can be very frustrating, but a lot of work is being done to figure it out.

Can anyone get ALS disease?

Yes, from what we know, anyone can get ALS. Although it tends to happen slightly more often in men. But anyone can get diagnosed. There are again many doctors working around the world trying to figure out why certain people (athletes and military) get it more often than others. Does it have to do with being more athletic? More prone to risky behavior? Nothing is for sure yet, as there is still so much to learn about this really complicated disease.

How many people have ALS, worldwide?

We know that more than 200,000 people have MND/ALS. However, that may not be completely accurate as many places do not have doctors with expertise to diagnose, nor do many places and countries have access to healthcare. So, the real number is likely a bit higher.

What is the difference between ALS, PLS, PSMA and MND?

The international Alliance of ALS/MND has some great wording on explaining the differences and here is what they say.

Motor Neurone Disease (MND) is the name given to a group of diseases in which the nerve cells (neurones) that control muscles undergo degeneration and die.

Amyotrophic Lateral Sclerosis (ALS), Progressive Muscular Atrophy (PMA), Progressive Bulbar Palsy (PBP) and Primary Lateral Sclerosis (PLS) are all subtypes of motor neurone disease.

The national institutes for health in the US describes the types this way:
“Limb onset” ALS happens when symptoms begin in the arms or legs.
“Bulbar onset” ALS is when individuals first notice speech or swallowing problems.

How can I help you in the best way?
Well, first just ask. It is always OK to ask me how I am doing and if I need anything. The most important thing we or any family can do it talk about ALS, even if it seems hard or makes you emotional. If we talk about it, we can support each other and know what the other needs. You can also help by telling other people about ALS or by participating or creating a fundraiser. Your local ALS foundation may have more information on this.

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