The Diagnosis

On June 10, 2015, I shared this message with my loved ones…

“Dear family and friends: I am so sorry to have to tell to you that today I was diagnosed with ALS. I am sad and scared, but also hopeful that I will live longer than the average ALS patient because mine is a disease mostly of the upper rather than lower motor neurons. This may mean my lungs will stay functional longer than the average 5 years. No matter how many years I have left, though, I know they will be beautiful because I am so well-loved by my husband Evan and all of you. Please keep me in your wishes, prayers, loving thoughts and light, and know that I am grateful to know you.”

Then my husband and I were swept away into the dizzying rapids of ALS care…

“Every three months, I will be attending a multidisciplinary ALS clinic so the progress of my disease can be assessed and I can learn new skills to keep me living comfortably. After a six hour first clinic visit in which I met with my doctor, social worker, occupational therapist, and physical therapist, I am happy to say my breathing and muscle tone are strong and my speech is in a range indicative of slower decline. At my next clinic in September, all of this will be assessed again. We are hoping for a very small amount of change, as this would mean I have slow (rather than average) progression.”

Those first months all came down to the question, “How long do I have?” That was no way to live…

“I’m fine,” I insisted, trying to be pleasant even though I was beyond overwhelmed.Deb shook her head. “Don’t settle. If you are having trouble buttoning jeans or using a fork, tell me. We will figure it out and keep you independent as long as possible.”Deb, my Occupational Therapist, was the 6th specialist I saw at Clinic the day everything changed. I was exhausted by endless assessments and frightened as I tried to make sense of all the information coming my way. Deb is not one for excuses, though, and I needed her pushing as badly as I needed the follow-up appointments with her where we plowed through a list of tasks that frustrated me and devised alternate ways to complete them. Deb changed my whole perspective on Clinic.

It is, as my neurologist Dr. Goslin says, a place to rewrite the story, even if we can’t change the ending.

We still check my progression, but this disease and the treatment for it no longer simply happen to me.  What I want matters. My goals matter. Deb taught me never to miss a chance to address my concerns and needs so that I can live as well and as long as possible. These hours in clinic, these people who support and hear me, keep me doing what I love. I believe that they may even save my life, keeping me strong until a medication comes out to stop this nightmare.

I have hope, and it is stronger than fear.

My blog’s name is in tribute to Meg Rosoff’s novel, How I Live Now, the ultimate tale of resilience and determination. Just as the main character Daisy learns the true nature of loss (“If you haven’t been in a war and are wondering how long it takes to get used to losing everything you think you need or love, I can tell you the answer is no time at all”), but never gives up, claiming, “Fighting back is what I’ve discovered I do best.”

I plan to use this blog to chronicle my own battle and connect with other ALS warriors.I am especially eager to work with my readers to ensure pALS (people living with ALS) get the care and access to assistive technology that transforms painful days of surviving into vibrant days of living. Click How to Help to find ways to join the fight to defeat ALS and care for pALS.


Endless gratitude and love to my husband Evan, who held me when I was diagnosed with a terminal illness, rocked me when I cried myself to sleep for months after,  and holds my hand at every single clinic. You are the reason I fight.

2 thoughts on “The Diagnosis

  1. Karla Roche says:

    I started having swallowing issues 8months ago, now twitching muscle cramps, hoarse voice and currently choking with the feeling someone is sitting on my chest at night… I am waiting for an EMG but I cant get obe until Aug 12.
    Scared.

    Like

    • howilivewithals says:

      I understand. That is frightening. Have you considered contacting the local ALS Association (www.alsa.org)? They work with many doctors and can sometimes can get you in faster. I do want you to know that if, God forbid, you do have ALS, there are actually more options than you may think both for the short term and long term. Depending on how much trouble you are having swallowing, a speech therapist can immediately show you ways to make your eating safer (the ALS Association can help you find one). Failing that, there is a quick, easy outpatient procedure to make sure you are nourished. I have very little control of my tongue, so I will probably have that procedure soon, but for now I enjoy a lot of thick protein smoothies. The point is, no on will let you choke or starve. A clinic (or maybe the ALS Association) will also hook you up with a machine to breathe for you at night and give those lungs a break. The ALS Association can introduce you to some ways to communicate and maybe lend you a Chattervox to amplify your voice and save you energy. If they cannot pull this off, I might be able to get one for you. It is a huge relief. The point is, you don’t have to live like this, whether or not you have ALS. I understand that was a lot of info. If you have questions about any of this, or if you want to talk long term, email me at rachel.doboga@gmail.com. You are not alone!

      Like

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