FROM FIRST SYMPTOMS TO DIAGNOSIS - ALS
There is so much to tell. In October, 2007 Dewie was diagnosed with ALS, and I’m not sure how much people know about the disease, but I didn’t know much myself before all of this happened except that it is sometimes called Lou Gehrig’s Disease. I was aware of a book called “Tuesdays with Morie” that was made into a movie with Jack Lemmon. At that time I hadn’t read the book or seen the movie. I guess I knew that ALS was considered to be fatal, but I don’t remember.
Basically, with ALS a person’s nerves that control their muscles just quit working. Specifically the disease is marked by the “death” of both “upper” and “lower” motor neurons because of some kind of dysfunction on the cellular level. Like many diseases, doctors really don’t know what causes it. Research has identified a hereditary factor and a genetic predisposition. Even though no one in Dewie’s family has ever had ALS, that doesn’t mean she doesn’t carry the genetic marker (she hasn’t been tested for it). I think there may be an environmental factor as well because there was a higher than normal incidence of ALS among veterans of the first Gulf War, for instance. Some people think that mercury like that found in dental amalgam can play a role and Dewie was a dental assistant for years and handled amalgam material as part of her job. She also has some silver fillings. I think that there is a connection to Statin drugs that are prescribed for lowering cholesterol because neurological side effects are mentioned on the label, and also because many people have reported getting ALS or related symptoms after taking Statins and finally because Dewie took a Statin for three years before she developed symptoms. But there is no “recognized” connection.
Anyway, what happens because of the loss of “motor neurons” is that you literally loose your muscles one by one as the disease progresses. Your mind is never affected. (It is sort of like the opposite of Alzheimer’s, which affects the mind but not the body.) So ALS takes your muscles away until you are completely paralyzed. Each patient’s disease starts differently and progresses differently. Dewie’s symptoms started in her left hand. The rate of progression varies from person to person: some slow - some fast, and it seems that for each individual, their specific rate of progression, whether slow or fast, doesn’t change. Dewie’s progression has been very fast. There are at least two forms of disease onset, limb and bulbar (referring to the bulbar nerve which controls the mouth, throat and tongue). Dewie’s ALS began with limb symptoms only (her left hand) but soon we noticed difficulty talking and swallowing, so she now has both kinds. Some patients start with bulbar symptoms and misdiagnosis is common, both because the disease is somewhat rare and because slurred speech makes people think, “stroke”. But in that, we were lucky because Dewie’s regular doctor quickly suspected the 24/7 “twitches” in her left hand might be ALS and he sent her to a neurologist and eventually to a clinic that specializes in ALS. The diagnosis is a difficult one for doctors to make even when ALS is suspected and the process is basically one of eliminating all other possible causes of the symptoms. So for Dewie, the “twitches” in her hand began in April of 2007 and she was diagnosed in late October.
