By Interactive Metronome, Bricole Reincke - September 8, 2014
Over the past few weeks, you have probably heard a lot about the “Ice Bucket Challenge” that is designed to benefit ALS research. But what is ALS, and how does dumping a bucket of ice water on your head benefit anyone? Well, we’ll start with the harder question: what is ALS?
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, motor neurone disease (MND) and Charcot disease (after the late Jean-Martin Charcot, the “founder of modern neurology”), is a degenerative disease of the spinal cord and brain. It affects nerve cells, specifically motor neurons, that connect the brain to the spinal cord, and the spinal cord to the muscles throughout the body. When these neurons die, the ability to control those muscle movements is lost. This will ultimately lead to paralysis and death.
The ALS Association’s website offers a wonderful explanation of the disease through a breakdown of the name:
A-myo-trophic comes from the Greek language. “A” means no or negative. “Myo” refers to muscle, and “Trophic” means nourishment–”No muscle nourishment.” When a muscle has no nourishment, it “atrophies” or wastes away. “Lateral” identifies the areas in a person’s spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening (“sclerosis”) in the region.
This tragic condition can strike anyone, and often in the prime of their lives. It begins with weakness, difficulty chewing and cramps. Unfortunately, such minor symptoms mean that most people don’t receive the diagnosis of ALS until months have passed and atrophy has begun to set in. Eventually, trouble buttoning clothes and running progresses to trouble getting out of bed and walking. Sadly, within a few years, most patients pass away from respiratory failure when the muscles controlling the diaphragm will no longer respond to the brain’s cries to breathe.
In another cruel twist of fate, ALS can also affect the brain’s cognitive abilities. A disease once thought only to affect motor function, a fate dire enough, has actually been shown to lead to depression, memory loss and problems with decision-making. Fortunately, the disease does not seem to rob individuals of their intelligence, or their ability to utilize their senses.
So, how can we help? Everyone can help by being involved with the ALS Association, the Motor Neurone Disease Association, ALS Therapy Development Institute, Project ALS and other great community organizations every day by donating your time, money and expertise to help fight the disease.
But why ice water? Ice water challenges have been around since May to help with cancer, brain tumors and other conditions, but Pete Frates, a former Boston College baseball player and father still in his late twenties, shifted the attention to ALS when Boston College players and coaches did the challenge in his honor. Within days, it was on every social media outlet in America, and then the world. Everyone from Lebron James to Bill Clinton to Homer Simpson has done the challenge, while some have opted to donate instead.
Why is doing the challenge good if donating money is the other option? Three reasons. First, it brings awareness to ALS, which means more research and more brains looking for a cure. Secondly, after doing the challenge, the rules require participants to challenge others to dump ice water on their head. That means that more people have the option to accept the challenge or donate more money. More money? Yep, that is reason number three…even if you dump ice water on your head, you still have to donate at least $10 ($100 if you don’t do the challenge).
Fortunately, many people who also accept the challenge donate much larger sums of money, especially celebrities and companies. Our CEO, Matthew Wukasch, wanted to challenge some of Interactive Metronome’s business partners and our employees stepped up to the challenge (watch video below). He wanted to donate $100 for every employee that took the challenge; plus, we couldn’t resist an opportunity to help those in our network who are suffering with ALS.
What is even better is that our donation is just a drop in the bucket (pardon the wordplay)! As of August 29, the ALS Association reported that it has received over $100 million to help fight ALS.
Now, the challenge is keeping up awareness for the disease. Although ALS patients have almost as few options as Lou Gehrig had when he was diagnosed back in 1939, it isn’t all doom and gloom. While researchers scramble to find a cure, there has been some advancement aimed at managing the symptoms of ALS. Occupational, physical and speech therapy are all employed to keep individuals healthy, active and independent. New tools have helped these specialists create more targeted treatment plans that are designed to retrain the brain and body, using the brain’s plasticity to work around damaged areas.
Here at Interactive Metronome®, we are happy that we have been able to help those living with ALS. Many of our Providers utilize IM training in their treatment plans for clients with ALS. Take Larry, for example; his ALS was making daily activities increasingly difficult. However, when his OT and PT assistant utilized IM training in his plan, he actually regained lost function! Larry was having trouble with serious falls and had lost the ability to extend his fingers, but now he is feeding himself and performing unassisted self-care, such as grooming and dressing. Amazing!
That is a success story that needs another chapter. When we heard Larry needed an IM-Home because Medicaid won’t cover maintenance, we knew we had to help. We are sending Larry a free IM-Home unit so that he can continue his training from the comfort of his own living room. But the giving didn’t stop there. You need a skilled Provider to create customized training plans and monitor Larry’s performance on IM-Home, and his therapist stepped in. His IM Provider has generously donated her expert services and this is the perfect way for us to keep supporting ALS. She has worked tirelessly with Larry, and their efforts have really paid off. Hopefully, continued IM training can stave off the devastating effects of ALS for years to come.
While we can’t promise any sort of cure for ALS, we can help restore independence. Let IM be the tool that makes life easier for anyone with ALS, MS, Parkinson’s and many other neurological conditions that attack the brain and body. IM training can take therapy to the next level, helping to ensure that you get the most out of the hours spent in the clinic or performing tasks at home.
Visit us at www.interactivemetronome.com to find out more about Interactive Metronome® and how IM training can help clients not just manage their ALS symptoms, but regain lost function. With IM-Home, they can even do it in the comfort of their own living room. No more expensive, time-consuming and sometimes painful visits to the clinic. Clients can reach unbelievable heights with IM-Home; the possibilities are truly limitless!