I mentioned in a previous post that Mary put off telling people about her diagnosis. And the ones she did tell, she kept in the dark about how much and how quickly the disease had progressed. People would call that she hadn’t 
spoken to in a while, and hear her “nasally” voice and ask if she was ok. “Oh, it’s just a cold. I’m fine.” Those were the ones she didn’t tell about the ALS. Others would call and ask how she was doing. “I’m doing GREAT!” she would tell them, not telling them she could no longer hold the phone and that the caregiver had just placed a headset on her, plugged it into the phone, set it on her lap and pressed the answer key for her.
Her reason was that she couldn’t allow herself to get caught up in the negative, that she needed to live in the moment and not think about the future. I would argue that she did need to think about the future so we could make plans for her care. It wasn’t until later that I realized she truly believed she was going to beat this disease. She was researching unconventional treatments, pouring through articles about how certain strains of marijuana cured cancer and ALS, so she started growing a marijuana plant to make into tinctures to take. Not that she actually used any of the marijuana, despite arguing with doctors about getting a medical marijuana card. She read about someone in Israel being cured of ALS by stem cell therapy, and swore she would live long enough to receive that treatment. When I read the article, I wasn’t convinced the single test subject had actually had ALS.
This is not uncommon for ALS patients. There are all kinds of ads and offers of “we’ve cured ALS” with bee venom therapy, paleo diets, crystal therapy, essential oils, marijuana, secret herbs of the Amazon or Africa. They all come with a very high price tag. It is heartbreaking to watch people recently diagnosed as they grasp at any potential treatment or cure, as if no one else has ever tried it, as if it had ever truly worked. Because if it truly did work, we would be telling everyone about it! It creates false hope, drains bank accounts, and causes rifts in families. And the predators walk away with thousands and thousands of dollars.
What we need are real treatment options, real medications that have been tested, real diagnostic tests, a real cure. It is often said that ALS is not incurable – it is underfunded. Even with promising research being done around the world, the funding is not there to support ongoing research, or new research projects. Please consider donating to support the work, through sponsoring an ALS Walk or other fundraising event, large or small. You can make a donation through purchasing a product, such as with my daughter’s “Jams for ALS” fundraiser . You can make a direct donation to the ALS Association. Help spread awareness about ALS, what it is and what it does, and what you can do to help those living with ALS.