Both Things Are True

The 2025 NEALS CRLI felt so right- there is so much I can’t control. But here- something I can control, something I can DO. I sat at a table with two women in their 30’s affected by ALS- we later gabbed over cocktails in the hot tub. I mingled with all sorts of people- diagnosed, caregivers, at risk- drawn together by this “shit hand.” Dr. Bedlack wore a Pokemon-themed custom-made suit for Comic Con week. A kindred spirit. There were presentations on basic ALS biology, how to read a research paper, and so many ideas- TDP-43, glial cells, inflammation. Different approaches to treatment. 

I set my goals in advance- the main one was to talk about FTD, which I’ve heard referred to recently as “ALS’s neglected cousin.” How very true. I feel so confused on how FTD and ALS are such siloed fields in terms of research when there is so much overlapping biology- specifically for TDP-43 disease. I asked two questions about FTD, with nothing more than the intention to put the idea in people’s heads that these diseases exist on a spectrum. I could see the surprise on the speakers’ faces- and also the gears turning. I was later highlighted in End The Legacy’s weekly report- gah! What a feeling- like I really am doing something to expedite research, get more drugs that work into humans. I can’t wait for more. 

It’s thrilling to be in ALS spaces. And, in some sense, it feels like I’m not supposed to be here. Afterall, my Mom never had an official ALS diagnosis.

It’s hard not to believe FTD is the worst disease. My mom’s main source of suffering- for over 10 years- was FTD, not ALS. I wasn’t there to watch my Aunt decline with Bulbar-onset ALS. I did my best to indicate to my Mom’s care team that she may have ALS as well as FTD- the foot drop, head drop, stiffness in her hands, the twitching, her low oxygen- but it was brushed to the side by the power of attorney and even the neurologist. Granted, when an FTD specialist took a look at her, he knew immediately she had motor symptoms, but the people in charge of my mom’s care didn’t facilitate continued visits to that doctor. I jumped over hoops to try to get my mom an ALS diagnosis- it’s as simple as that. With an ALS diagnosis, a patient immediately has access to so much more support- clinics, nonprofits, clinical trials, Expanded access Programs. I tried, and it didn’t happen. I wasn’t her POA- there was nothing I could do. 

As much as I talk about ALS- because I need to- what I really know is FTD. I’ve known it since I was a preteen. 

Even in FTD advocacy, I’ll often see posts from caregivers of “what crazy thing my loved one did today.” It fills me with rage. It’s why I left most FTD support groups. People with FTD deserve as much care, empathy, understanding, support and hope as people with ALS do. 

Two days before NEALS I spent a day at Disney with my dear friends from college. I really wish I lived in that farm house reconstruction in “Living With The Land.” I started feeling unwell, but I brushed it off and felt fine during the conference. Later, when I got back to New York. I completely crashed. I was out of commission for a week.

In 2022, I had a mild case of some viral infection- I tested for Covid twice and was negative but I did lose my sense of smell. Right after recovering from the fever, I was hit with a range of debilitating symptoms that landed me in the ER- a couple of times. I was diagnosed with an “atypical migraine.” Since then, three years ago, I’ve experienced periods- or “flares”- of debilitating symptoms- weakness, dizziness, nausea, palpitations, horrible pain- in my chest, back, arms, stomach. Especially after kneeling and standing, which I do often for my online business. When no doctor could figure out what was really wrong with me, I was the one to notice my symptoms lined up most with POTS, or Postural Orthostatic Tachycardia Syndrome- dysfunction of the nervous system that can affect the heart and other organs, often triggered by a viral infection. With heart conditions running in my family, it’s been quite an ordeal. 

And of course, it’s a year wait to see a dysautonomia specialist unless there’s a cancellation. In the meantime, all doctors can do to manage my debilitating symptoms is tell me to eat a lot of salt, wear compression socks and exercise. I have beta blockers already prescribed by my cardiologist months ago.

When I first started having symptoms- unexplainable pain, twitching, even fainting- I was sure it was c9 related. Even though I haven’t tested- it is so horrifying to live with this kind of risk.  

I try to talk about these diseases to my friends- people who otherwise would have no reference point. In some way- there’s no way for me to explain what it’s like to think about ALS and FTD every day. But I have to try. I’ve always worn my heart on my sleeve, tried to be vulnerable in the service of connection. 

But my friends get to have one conversation with me and then put ALS and FTD behind them. They get to go home, get in bed and put their head on the pillow believing that they have time- that they are going to live a long life. For me, there are two possibilities. I comfort myself by thinking:

In ten years, either there will be a cure for ALS or humans will be wiped out by AI, an unliveable environment, nuclear war. It’s so strange- I both can and cannot imagine myself getting sick. With c9 nothing is known- will you lose your mind, your body, or both? 

In recent news, Huntington’s disease has been treated. A gene therapy administered through brain surgery that slows disease by up to 75%. If it will ever be approved by the FDA to treat HD is another issue, but here we are, living in a reality where Huntington’s is treatable. Over and over again, leaps and bounds are being made- Toferson, Jacifusen, drugs to treat nano-rare causes of ALS,  many approaches to Progranulin- and still, nothing for C9. or sporadic TDP-43 disease. Nothing that will save anyone in my family. 

Women in my genetic ALS and FTD support group this week were talking about MAID. 

I will do everything in my power to give more people more options than that.