I can’t!

Maceo Carter, Husband, Father, living with ALS.

What do these words mean to you?

Pretty straight forward, right?

What if this statement had the potential to put your life at risk? Regardless of the events precipitating any loss of life by people of color, it is and continues to be tragic. Imagine a scenario like many others, but now insert a physical limitation preventing someone from complying with authorities.

This is precisely what Maceo is referring to in the image above. When I first saw this posted on Twitter, I exclaimed, “ Oh my God, thank you for sharing this troubling reality!”. However the more it simmered in my mind, I began to ask, “WTF is wrong with this world?”.

How is it that a person with an incurable, terminal condition, ALS, has to be concerned with such an ugly reality. I often say, “No one gets ALS until they get it”. Well Maceo, until I read your statement, I didn’t get it.

To have ALS is bad enough. To have treatments for ALS within reach, but denied is criminal.
But having ALS raise your risk of racially motivated harm is sickening.

Why, why, why…I Just Can’t!


How can I be so optimistic given my diagnosis, you may ask?

#Sponsored #MTPApartner I’m proud to be partnering with Mitsubishi Tanabe Pharma America (MTPA) to help newly diagnosed pALS and cALS navigate their diagnosis.


Unabashed joy, love and gratitude. These were the emotions overwhelming me when my wife and I concluded the adoption process for our three youngest children. The moment the judge’s gavel struck the bench, our family grew from three to six, wow!

Fast forward two years, all our kids are doing well, our three youngest have settled into their “forever family”. By now I had exhibited signs and received the diagnosis of ALS. Really are you kidding me! Our family was devastated to say the least. We had a choice to make; allow ALS to consume us or choose to live “our” lives boldly.

We could have lost control of our lives had we decided to let ALS be our compass. So we chose to remain in control by talking and communicating all aspects of this disease. Our family is very pragmatic, ALS is something dad has. Yes it infiltrates many aspects of our lives, yet we simply don’t let it consume us. I can’t really explain it. When speaking to a highly engaged person and you ask them, “How do you do everything you do?” often their answer is, “I don’t know I just do it.” That’s how it goes, we just live our life, in spite of ALS.

So can you, it may seem insurmountable at first, but there are steps you can take to feel more in control. Such as:
*Enlist the entire family in a very honest and real conversation of what’s to come.
*Engage with the support offered to everyone in the immediate family.
*Remain informed on current therapies and discuss these with your doctor. In my case, this included discussing the prescription drug RADICAVA® (edaravone) and deciding to begin treatment.
*Enjoy your life the best you can, make plans, they may change, but make them.
*Don’t deny anyone’s fears, anger or anguish associated with ALS and its effect. Mourning begins the moment the diagnosis is rendered, to be bluntly honest.

RADICAVA is indicated for the treatment of ALS. RADICAVA may cause serious side effects, including hypersensitivity (allergic) reactions and sulfite allergic reactions. The most common side effects of RADICAVA include bruising (contusion), problems walking (gait disturbance), and headache. See Important Safety Information below.

I try to be as optimistic as possible, but “how?” you may ask? My answer to you is…Why The Heck Not! The alternative is not amenable to me. Let me be clear though, it is immensely difficult to maintain a healthy outlook with such a relentless disease. I commend anyone that does, even if but a fraction of the time.

If ever in need of support, don’t hesitate to reach out, there is a whole community here for you. A community made of pALS, cALS, medical experts, and advocates. Just know you are not alone on this journey. As a pALS myself, I feel alone at times but I know in my heart I Am Not Alone.

J. Reyes

There are tools to help you “Embrace Your Now,” including the ALS Care Locator that can help you locate healthcare providers and infusions centers that treat ALS: using the following hyperlink: https://www.radicava.com/patient/als-care-locator/?utm_campaign=corp-radicava-us_activator_06-q1-21_con_tra&utm_medium=social-sponsor&utm_source=blog-activator&utm_content=jr-blog-2_post_commercial-support_br_CP-RC-US-1868utm_target=pat__standard

This information is intended for U.S. audiences only 18 years of age and older. RADICAVA is available by prescription only. Talk to your doctor.

Radicava® is indicated for the treatment of amyotrophic lateral sclerosis (ALS).

Important Safety Information
Before you receive Radicava® (edaravone), tell your healthcare provider about all of your medical conditions, including if you:
• have asthma.
• are allergic to other medicines.
• are pregnant or plan to become pregnant. It is not known if Radicava® will harm your unborn baby.
• are breastfeeding or plan to breastfeed. It is not known if Radicava® passes into your breast milk. You and your healthcare provider should decide if you will receive Radicava® or breastfeed.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

What are the possible side effects of Radicava®?
• Radicava® may cause serious side effects including hypersensitivity (allergic) reactions and sulfite allergic reactions.
• Hypersensitivity reactions have happened in people receiving RADICAVA and can happen after your infusion is finished.
• Radicava® contains sodium bisulfite, a sulfite that may cause a type of allergic reaction that can be serious and life-threatening. Sodium bisulfite can also cause less severe asthma episodes in certain people. Sulfite sensitivity can happen more often in people who have asthma than in people who do not have asthma.
• Tell your healthcare provider right away or go to the nearest emergency room if you have any of the following symptoms: hives; swelling of the lips, tongue, or face; fainting; breathing problems; wheezing; trouble swallowing; dizziness; itching; or an asthma attack (in people with asthma).
• Your healthcare provider will monitor you during treatment to watch for signs and symptoms of all the serious side effects.

The most common side effects of Radicava® include bruising (contusion), problems walking (gait disturbance), and headache.

These are not all the possible side effects of RADICAVA. Call your healthcare provider for medical advice about side effects. You may report side effects to Mitsubishi Tanabe Pharma America, Inc. at 1-888-292-0058 or FDA at 1-800-FDA-1088 or http://www.fda.gov/medwatch.

Please see full Prescribing Information and Patient Information.

For more information about RADICAVA®, call 1-844-SRCHLGT (1-844-772-4548).

Tongue Tied by ALS

ALS Life…

The Tongue 👅.

You can choose to hold it, most don’t to their detriment.

You can bite it, again many fail to do this with adverse effects.

It is a muscle fundamentally. It aids in speech, chewing, swallowing and digestion.

It is a voluntary muscle. What disease effects voluntary muscles? ALS!

Yes this dreadful disease takes your ability to use your tongue effectively. This effects one’s ability to do a number of things.

-Manipulate food away from the back of your throat, causing choking episodes.

-The tongue can experience fasciculations, yes! Those pesky, annoying muscle twitches. It twitches like all the time. Straight out of a sci-fi movie, it looks like it has a life of it’s own.

-Speech is affected; as your tongue slowly loses conscious control your speech becomes slurred, indistinguishable.
This is compounded by the fact that the soft palate is affected by ALS also, altering the voice.

As all the above progress our voices are lost, we lose our ability to eat, swallow and are at increased risk of choking.

Just another random thing ALS takes that most folks aren’t aware of.

The tongue; a gift, a curse, a tool or a weapon. Regardless, when it fails to function, your life changes.

cALS Strong

WTF are families or caregivers of a pALS to do, when the professionals hired to care for said pALS, abandon their post?

Really! So you’re telling me an untrained, unpaid lay-person has more integrity than the effing professional! This should be a testament to the sheer magnitude, workload, intensity and dedication required of a cALS. Does this not resonate loudly as to the need for the general public to fucking get a clue about ALS.

Seriously a fellow pALS who is trached was abandoned by their nurse. No warning, no notification to the agency, just up and left. As a previous health care professional, this is unfathomable to me. How can we as a terminal community overcome the sheer ignorance and disregard for our lives. Failed by government three letter agencies and apparently our care is too much for a professional; what next!

To the pALS it happened to, I’m so sorry you had to experience this. It is utterly unacceptable. I pray this never happens again, unfortunately I believe it is more prevalent than we realize.

We must, as a society do better, we simply must.