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So, you have ALS. What can you expect…

(Part 1&2 of 7)

Initially: shock, dismay, numbness, fear, confusion, anger and a slew of many more emotions. You and your family will also experience information overload and I mean a Tsunami of information. This will be followed by questions, queries, exhaustive online searches and lists. Lists of questions, resources, leads, suggestions and websites.

Ok! Catch your breath, breath, exhale…breath…

Now that two days have passed, collect yourself, continue to breathe. Now what do you need to focus on? No really, ask yourself what is pressing at this very moment?

Safety? Have you experienced falls? What can help mitigate this?

Speech, swallowing, choking? Who can advise on this? Technology to consider? Interventions?

Long term care?

Benefits? Veteran y/n?

Work, job?

Living accommodations, accessibility?

In home care, aid?

In essence what do you need to address now versus what can wait for a bit?

What else to expect, stay tuned I will follow up with more. Remember it’s only been a few days I don’t want to overwhelm you.

I will share that you can expect this community to support you, virtually hug you and guide you. For we share this journey with you.

So you have ALS

What can you expect…

(Part 2)

Let’s continue, shall we.

Now that you’ve had a moment to catch your breath and clear your search history on everything ALS, what’s next?

Several paths will present themselves:

  1. Accessing an ALS Clinic (Center of Excellence)

  2. If a veteran, accessing a VA ALS clinic and your benefits

  3. Pursuing alternative health care, independently or combined with traditional medicine, lastly

  4. No treatments or therapies.

All of the above are choices that are deeply personal and must be respected. However, and I mean this sincerely, your choice requires consensus by your support network, a.k.a. family. Why, in case you are unaware, you will require total care and support, no one escapes this, regardless of rate of progression. The blunt reality of ALS is that none of us know how it will progress for each of us. There will be some who offer their insights as to onset, progression and a slew of other aspects regarding ALS. Tread carefully is the only thing I will say.

Once you choose though, depending on that choice, you can and will alter your approach as needed. Remain hopeful that therapies are imminent, remain open minded and keep your options open.

This brings me to the topic of clinical trials. In my humble opinion, trials are not designed well for us but they are evolving with pressure from our community. The reason to participate in trials, hope! Hope that the therapy meets our needs. I could give you a bunch of figures and science, let’s be honest none of that matters, all we want is a chance.

I will end part 2 with this:

ALS has introduced itself to you and is becoming an important aspect in your life. But for a very small percentage, you are and will continue to be the same person. One major difference, your physical limitations require you to surrender to the love and support you’re surrounded by. That is if you are blessed to have such support. There are many who either don’t or loose it entirely.

More to come...


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