Thursday, 20 June 2013

Search Terms

One of the ways people from all over the world end up at my blog is through Internet searches. The Blogspot site tracks these search strings, the questions and parameters people put into Google and Yahoo and Bing. They list this information for me to see and what I see is fascinating. Here is a list of recent searches where people ended up clicking on the link to my blog.
  • how long can you live with als
  • als suicides
  • i am dying from als
  • incorrect als diagnosis - richard mark green
  • cost of living with als
  • if you had als gain weight
How long can you live with ALS? That is a tough question. This searcher clearly wants some sense of what the future looks like for a Person with ALS. The truth is that if you look at it without dismay or distress, even then it is a challenging view. Most people die within 2 to 5 years of diagnosis. About twenty percent of people with ALS live five years or more. Up to ten percent will survive more than ten years and five percent will live 20 years. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed. The situation is not hopeless; it is merely dire.

ALS suicides. I've thought about it; strike that, I think about it, daily. It's tough enough to get a prognosis of 36 months. It's really tough when the doctors describe those last months of your life, and even tougher when you meet other People with ALS who are past living and into dying from ALS. Suicide seems to be such a reasonable option. The only problem is one of timing. You may not want to ride this puppy to the end but you sure don't want to leave too early. Suicide is an option, it's just not a great one.

I am dying from ALS. No, you are not! You are living with ALS. From the moment you are born you begin the march to death. We are all dying from something. The only challenge for a Person with ALS is that we have a "best before" date and a score that tells us how long it will take to get there. If you have ALS, be sure you live before you die. Then again that advice works regardless. We, each of us, should all live before we die.

Incorrect Diagnosis. It happens. ALS is a great imitator. Doctors often miss symptoms or attribute symptoms of ALS to other diseases. Doctors assume its ALS based on clinical information yet at times fail to see things like Lyme Disease or other Motor Neuron Diseases. How often? When I asked my neurologist this, she said they were wrong less than 1% of the time. Even if she is over-confident by a factor of 10, that's a 1000% differential, they are only wrong about 10% of the time. Doctors hate to say the words ALS; it is a disease against which they are powerless. It hurts their Messiah complex. They will fight to find something else and will only submit when all else is lost. They aren't wrong very often.

Cost of Living with ALS. It's high. ALS is probably the most expensive disease there is in terms of lifestyle costs. There are the mechanical elements, things like lifts and chairs and walkers and bed rails. There are the mobility elements, things like vehicle modifications and hand rails and controls. There are medical elements, things like visits to doctors, physiotherapists, counselors, nutritionists, speech therapists, and the list goes on and on. These and more are the costs of living with ALS.

If you had ALS, would you gain weight? Yes! I am living proof. The "beer and nacho" diet works. The problem is not that you gain weight but that you don't gain enough and can't keep it. With ALS your metabolism runs faster. You simply need more calories to keep your energy up. When the disease attacks your ability to eat, you will lose weight, far faster that you would like. So eat, drink and be merry.

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