So, you have ALS.What can you expect…(Part 1)

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 accomodations, 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.

The Juan and Only

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