The Ice Bucket Challenge

If you had not before this Summer, you have certainly by now heard of ALS, sometimes called “Lou Gehrig’s Disease.” Raising money and awareness through the Ice Bucket Challenge has placed ALS in the spotlight.

I hope.

Amyotrophic Lateral Sclerosis is a neurodegenerative disease that affects the motor neurons in the Central Nervous System (CNS). “Amyotrophic” can be translated to “No muscle nourishment,” what is actually happening is the neurons which control the muscle have died, meaning the muscle can no longer be controlled voluntarily. “”Lateral” describes the portion of the spinal column in which the neurons are located. “Sclerosis” is a term for scarring,  referring to the hardening of areas in which the neurons have died. As ALS progresses in a patient, the degeneration of the motor neurons causes paralyses, If you recall Stephen Hawking, 40 years ago he was wheelchair bound and mildly spastic. He was able to father children and have a relatively normal life within his accommodations. Today, his communication is limited to a synthetic voice controlled by a computer, which he operates with his cheek muscle, one of the few muscles he is still able to control.

Like Lou Gehrig, Stephen Hawking is a famous person putting a face on the disease, which is relatively rare, affecting about two of every one hundred thousand people, about 140,000 people in the world, 6300 in the United States. There is no cure or treatment to end or reverse the degeneration, but a drug from Sanofi-Aventis, Riluzole, may slow the progression of the disease. It’s hard to tell with statements such as that. Stephen was diagnosed with ALS over fifty years ago, life expectancy is rarely more than ten years after diagnosis. My own experience with chronic disease has been some drugs work for some people, each case is different. I was diagnosed with MS twenty five years ago, none of the drugs that have been developed work for me (in fact a few made me worse), but my outward symptoms are barely noticeable. On the other hand, one woman who was diagnosed at the same time as me died within six months.

I have a friend who has been raising money for the ALS foundation for years. Every February she is involved in a “Valentine’s Day Plunge” in Manasquan New Jersey, in which people are sponsored to jump into the Atlantic surf to raise money for ALS research. In a bizarre twist of fate, her husband was diagnosed with ALS last year. She has organized a benefit for her husband Danny, and will continue with the Valentine’s Day Plunge, but she also has made popular among our circle of friends the Ice Bucket Challenge, which has now “gone viral.” I don’t know where it started, but we were doing it before it hit the news.

The idea behind the Ice Bucket Challenge is to raise money, but in popular culture it has turned into “raising awareness.” Well, a lot of people now know about dumping a bucket of cold water on themselves, but I don’t know that many know about the disease or are making contributions. Thus this article.

No amount of cold water or awareness is going to curb ALS, or any other disease. Awareness is certainly nice, with eighteen times as many patients, MS is largely misunderstood and I do find it quite annoying when people misinterpret my condition. Since I was diagnosed eight treatments for MS have been developed, none of which work for me. There is one drug for ALS, if it doesn’t work for you you have no other avenues. It could be worse, I had a friend in the Police Department I worked in who developed a disease only three other people in the United States had. He was the only guinea pig when research needed to be done. He vacationed at the NIH each year, no drug companies were interested in a drug that would have a handful of customers.

There is more than research that your donations provide. Most organizations provide support for patients as well. The American Cancer Society provided transportation for Emma to get to her Chemo and Radiation treatments, and provides wigs for patients who lose their hair. The MS and ALS foundations have outreach programs to assist with the daily needs of families affected by the respective diseases. Government funding is drying up, so not only do contributions go directly to research, they also pay for lobbyists to promote funding in Congress.

Being aware is not enough. Caring is nice, but only a sociopath doesn’t care. Money is what will make a difference. This year the Ice Bucket Challenge has inspired a flood of donations to the ALS association, $94 million so far. In reality that isn’t much money when you consider the price of laboratory equipment and facilities on top of the daily assistance provided to ALS patients, it amounts to roughly $671 per patient (worldwide).

 

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If you do not have the money or time to give, at least educate yourself about these diseases. Understand what that friend of yours is going through. That alone can make a world of difference.

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3 comments on “The Ice Bucket Challenge

  1. Mari Collier says:

    I’ve known two people with ALS. One died within a year of diagnosis. Another was going on five years (when we left Washington) and was still able to do almost everything. I’ve known and met several people with MS. You are correct in that it effects people differently. You are fortunate that yours has not caused some of the problems that can wreck the lives of people. One of my friends at church is like you, but her balance is getting worse. None of the known treatments have helped her. Yes, I tweeted.

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  2. Mike R says:

    Having spent 35 years hanging around the health care business, I had the opportunity to work with a few people suffering form ALS, and a larger number with MS. ALS is heartbreaking. I would usually first see the patient after they had been diagnosed and were suffering weakness in their extremities, having been sent for me to see what I might due to adapt them to a life of altered independence. Often the disease was so progressive that I found myself unable to adequately keep up any sort of rehabilitative efforts before the next phase of decline.

    Faced with the inadequacy of my training in physical rehabilitation to make a significant difference in lives, I chose to deviate from the normal course. I had noticed that one of the most difficult areas of ALS and severe MS, is the impact that it has upon the patient and their family structure and relationships. Frankly, they simply were all overwhelmed and shared a group depression and helplessness if there is such a thing. I found that the most productive thing I could do is to arrange of all of the family members and patient to have a 90 minute session that I simply titled “family training and education.”

    In the session I would sit everyone around a big table and go over what the group had never really been told, uniformly–what the pathology and course of the disease were, in terms of function and in terms of their relationship. I would cover the impact of the illness upon family members and the common human reaction and response. What I mostly wanted to get across was the fact that ALS and MS are not just the disease experienced by the patient, but one alters everyone who is part of that persons life. I then transitioned to the positive role that all of us could have.

    It was important as I went over this to look for the first indications of strain or emotion, for I needed to use that moment to help the family release a flood of emotion. If handled properly, the session turned into a group therapy session, with everyone spilling out their emotions and frustrations. Invariably it ended in them all wiping away their tears and coming together in resolve, with smiles on their faces, to be part of the life of the patient.

    My years of experience helped me to learn that in an age of medical care which is often ineffective in curing the illness, there remains a medication that is too often overlooked–the capacity we have as humans to be healers of the soul when we have an understanding of what the disease is, the perspective of the one suffering it directly, and the ways in which they can be a significant source of emotional and physical assistance.

    Too many of us fail to act because we really do not how to act. We are struggling with our own feelings of helplessness as to how important we can be in the life of our friends and loved ones. At the same time, too many of those with such illnesses are impaired by preexisting relational issues and their own process of grief and response. It takes but a gentle, loving tap upon the heart to heal much of this, but somebody has to make that tap.

    In the case of depression of a friend, none of us wish to ask the person if they have had any suicidal thoughts, for fear that it might inspire them where they did not exist, and out of the difficulty of simply voicing our concern over such a subject. As a result, too many people die for a lack of intervention. I am convinced that, likewise, too many sufferers of MS and ALS and similar illnesses, suffer from neglect and misunderstanding on the part of loved ones and friends, not because of callousness, but because they are simply ignorant and find it too uncomfortable to bring up deeply personal feelings.

    You won’t offend a person with MS or ALS to ask them about their condition with sincerity and out of concern. Don’t immediately offer to help before first establishing that you really do care to know and you take seriously your role in their lives. Will you offend someone’s sense of independence? Perhaps, but far greater is the offense of not caring, rather than possibly offend.

    Ask open-ended questions. Be honest to share if you feel awkward. Find out how they first found out about their condition. Ask them how it has affected their lives. No need to respond to their comments. Listen. Don’t be afraid to touch. In our culture we have great difficulty with moments of silence, thinking we have to fill them with words. We don’t. Sometimes the greatest thing we can offer is to simply be there. We may not know what it is like to live with the times the illness flares, or how it can affect the person’s cognition, emotions, and energy. But we striving to care and to learn is a medication of greater value than any of us can imagine.

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