It never gets easier hearing that someone else has joined this club that nobody wants to be a part of. Not only is this ALS diagosis the worst news you have ever received, but from this moment forward you’ll be making life or death decisions for the rest of your life.
There was so much I didn’t know in the beginning. When I was diagnosed with ALS in January 2024, I had no idea what ALS was. Shortly after diagnosis, my primary care doctor held an end of life appointment with me. In short, he sat me and my husband down and said…
“start here.”
We left that day with a checklist of hard tasks to complete.
As I began connecting in ALS communities online, I discovered so many people are diagnosed and left to figure out what to do next.
Looking back, I’m so thankful for my doctors wisdom and direction. Turns out, my doctor was right. He even wrote me a prescription that day instructing me to go straight to the Bahamas. So, we booked that trip, scheduled every appointment he instructed and starting checking the boxes on the list he provided.
Here are the five things I’d prioritize immediately after an ALS diagnosis.
1. Travel. Do Not Wait.
ALS doesn’t ask for permission before it steals your independence and freedoms.
I packed my schedule and went feral. Took the trips. Made the memories despite the judgement from outsiders. And just eight months later… I could no longer travel.
Looking back I’m so thankful I didn’t wait. If there is something you want to do, do not wait. Go. Book it today. The version of you that can still do it is here right now and she/he won’t be here forever. You deserve to go into the hardeset part of this with zero regrets.
2. Get Fitted for a Power Chair Yesterday.
I had no idea how uncomfortable, limiting and inconvenient a manual wheelchair would be. Getting fitted early made all the difference for my independence and my ability to continue having a social life beyond my hospital bed. My doctor wrote orders to my physical therapy office, and they set up the appointments necessary to get a custom fit chair made for me.
What most people don’t realize is that it can take months to get your power wheelchair. Mine took six months to be custom made and delivered.
Don’t wait until you lose function to start the process. Give yourself the support you are going to need before you desperately need it. The system moves slowly. You need to move faster than the system.
3. Voice Bank. Right Now.
At diagnosis I was experiencing some mild slurring that got worse with fatigue and some hoarseness. My whole career was talking. I couldn’t imagine life without my voice. And honestly… on a wing and a prayer I didn’t want to believe God would actually take it from me.
I’m blessed to still have my voice today. But about a year after diagnosis I started noticing more changes. Nothing obvious to the people around me but noticeable to me. I couldn’t sing out loud. I couldn’t shout hello to a neighbor when I strolled by. My speech trial was detecting a decline in words per minute and changes in projection and tone. ALS affects both upper and lower motor neurons. Most people notice the slurring (lower motor neuron damage) but may easily miss the upper motor neuron damages that are noticeable in tone, projection and words per minute. This type of damage can be easily missed. I hadn’t fully understood that.
I rushed to voice bank through Team Gleason. It took months to get through the process. I kept thinking about all those people who had told me to do it right away and I hadn’t listened. I’m thankful I made it through but it wasn’t a quick process. The good news is Team Gleason made it easy and even fun. Contact them and get this box checked. Your future self will thank you more than you know.
4. Accept Help Before You Think You Need It.
I had this idea that I didn’t need a caregiver until I truly couldn’t manage anymore. Before I knew it simple daily tasks were wearing me out completely. Just because I could do something didn’t mean it was the best use of my energy.
I qualified through long-term care Medicaid for two hours a day twice a week. I loved my caregiver. I loved visiting with her and the compassionate care she brought into my home. She did the dishes and a load of laundry while she was there and it didn’t take me long to see how much energy I was getting back by allowing the help.
I know how hard it is to start receiving help with toileting, grooming and showering. At diagnosis I told my family, “the minute someone has to wipe my ass, let me go,” haha…
Losing this dignity was one of the hardest things I’ve ever had to accept. But somewhere along the way I made a decision to receive it differently. Now I call it princess care and treat it like a spa day. The reframe changed everything.
5. Have the Hard Conversations.
I know it’s hard to talk about dying. DNRs, Living Wills, Trusts, Advanced Directives… get these done now if you haven’t already.
Your voice matters most right now. And one day you may not be able to use it.
Communicate your wishes clearly with the people you love. Lighten things up a little by helping to plan your final services and write your own obituary. But also give yourself grace because your perspective may change. I know mine has on many end of life wishes. What you think you want now might look completely different later and that is okay. You don’t know what you don’t know yet. I like to evaluate all of these documents every three months to re-evaluate and purposefully communicate changes to my loved ones.
ALS changes your life fast. But if you can prepare even a little, you will protect your peace and make the load a little lighter for your loved ones in the end.
One final thing.
Nobody handed you a roadmap when you walked out of that doctor’s office. Youre figuring this out as you go. This is the school of hard knocks. We’re learning together with a plan to graduate, but not at the same time.
I hope this post lights a fire under you and spares you all the mind drama.
And.. Always remember… you’re not alone in this.
Both of my books were written from inside my end-of-life journey. Raw, honest and yes… occasionally funny. Because if you can appreciate death and dying jokes at the dinner table, we’ll get along great.
Embracing the End was written while fighting for my life in hospice. It’s the book I wish someone had handed me the day I walked out of that doctor’s office with my checklist. Grab a signed copy here.
Embracing the End… Again was written when I unexpectedly didn’t die… and had to figure out what comes next when you’ve already said goodbye. Grab a signed copy here.
Want both? Grab the complete bundle and save with free shipping.
Disclaimer: I’m not a doctor or medical professional. Everything I share on this site is based on my own personal experience living with ALS. Nothing on this site should be used to diagnose, treat or make medical decisions. Please consult your healthcare provider for medical advice specific to your situation.
Embracing the End 
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