Info: ALS


WHAT ALS (Lou Gehrigs disease) ISN’T and IS

It isn’t curable.


It affects 1 to 3 people per 100,000. Generally speaking, prognosis is two to five years after diagnosis (depending on whether it affects the respiratory system first or last. With Howie it was the latter). 4% live ten years or more.

ALS (amyotrophic lateral sclerosis) is not dementia.

It may seem like it is because as it progresses, the ability to speak diminishes and then ceases. The ability to make facial expressions is very strained. (Thus the so-called “mask of ALS”.) The ability to express oneself through other means, such as hand and body gestures goes away and movements become spastic as paralysis sets in. Memories are completely intact.

Although it may seem like the brain is affected, it is not. The motor neurons are…

If you meet a person with ALS, remember that they feel locked inside. Their brain function (and even sexual function) is intact. They do not lose their personality; nor do they “become” unable to express themselves on purpose. Their brains are fully operating

but the way in which to express things is physically diminished.

Contact the MDA. They have amazing computers that enable ALS patients to remain interested in life, enteratin themselves, stay involved and this is important: to communicate needs, feelings, thoughts, ideas…

You don’t have to raise your voice when talking to a person with ALS so don’t insult them by doing so. They can hear you fine; unless of course they were hard of hearing before they got the disease. I can’t tell you how many people leaned in to Howie, and in a raised voice communicated to him as if he were deaf.

Also, talk ‘to’ them and not about them as if they weren’t there.

Patients may be prone to sudden crying; even laughing. It is a combination of sadness or depression due to their situation and ‘pseudo-bulbar effect’ which causes this.

What is ALS (amyotrophic lateral sclerosis) exactly?

It is a motor neuron disease – a neurological disorder affecting the cells which control muscle activity like walking, speaking, swallowing and general body movement. It is when it affects breathing that things get serious fast. It’s progressive in nature, with increasingly worse disability and, eventually, death.

Honor the wishes of the person before they lose the ability to freely communicate. We had to have power of attorney spelled out and notarized, all his wishes to “not intubate” and so forth… I remember drawing up a “communication board” of sorts with the alphabet on it for everyday use. In addition to the alphabet, it had the words YES and NO, as well as other things. He would blink as I pointed and we could spell out words that way. I’d point to each letter in turn. He’d blink. Eventually we’d spell out something like: “Adjust my head. Hurts.”

Many things were home delivered; what a godsend for a nondriver like me: filters and accessories needed for the various machines, diapers, and things like nutritional drinks by the case and bags and bags of catheter supplies and syringes needed to give him the drinks through his tube. Emergency phone numbers were everywhere. Keeping a person in the highest spirits you can, and addressing their comfort levels, along with keeping them clean and fresh go a long way toward dealing with this. I researched every single thing so I would be educated about things that were going to happen. I don’t care for surprises. I’ve never even had a birthday party. As the sole caregiver, I made lots of lists! Anyone would want the same level of respect and care done for themselves. Dignity and comfort are paramount!

My book Under The Banana Moon is one journey with ALS. Unfortunately, there are hundreds of thousands of journeys going on around us right now.


My husband took the amazing drug Riluzole, which increases life by a few months. It’s the only medicine available as of this writing.

There is an exciting buzz going on about PRCN-829, the first gene therapy for sporadic ALS.

In October 2013, scientists at John Hopkins announced using stem cells to partially cure paralysed lab mice. Human embryonic cells were infused into their spinal fluid. Project ALS (a New York based charity) is hopeful this breakthrough can be applied to ALS patients. I’m a huge animal advocate and I’ve also seen someone become paralysed bit by bit by bit. Stem cell study is crucial to understanding this disease if one day we hope to eradicate it. Therefore I must support it.

The recipient of The Popular Mechanics Breakthrough Award of 2012 (University of Pittsburgh and UPMC) will tell you about Tim Hemmes, injured in a motorcycle accident, who can now hold his girlfriend’s hand with his brain willing a robotic arm to do so. With strides like this, what’s next for people with ALS?

I don’t believe the underlying causes of ALS are fully understood. In the meantime

it is always in the best interest to fully utilize what I believe is a great strength that all human beings have and that is (the also ‘little understood’ mind-body connection and inevitably):

hope. Also faith. It is what makes us human.