This disease is an attack on the motor neurons (nerves) in the brain and spinal cord. These neurons control the muscles, once they are destroyed you can no longer control the muscles.
Recently the disease became clearer to me when someone that I went to school with was diagnosed with this. This was a very difficult time for him and his family. He went through denial,resentment and then acceptance although he did not want his teenage child to know until it was clear that he would not be able to hold on , and was in the hands of hospice care.
Symptoms of this disease are:1)twitching and cramping of muscles, 2)loss of control in arms ,3)trouble using arms and legs, 4)weakness ,5)tripping and falling,dropping things. Later in disease will be trouble speaking,slurred speech ,trouble swallowing ,breathing difficulties. One of the most frightening effects is the feeling of choking, and having your family watching you choking or possibly drowning on your own saliva.
A fear of some patients is living the rest of their lives in severe pain , where actually this disease itself does not cause a lot of pain. Death is actually very peaceful their breathing will become shallow and slow. Being knowledgeable as the caregiver in this situation can make a great differance.
Treatments are usually to treat the symptoms. Physical Therapy can be very helpful to keep muscles moving and speech therapy is helpful when problems with eating and speaking. Not every patient suffers from the exact same symptoms. Some of these patients may live years with this illness and some may not survive long. Most often the patient is into the disease by 50% before diagnosis. Of course there other diseases that need to ruled out before this can be diagnosed. Lyme disease , MS and a number of other CNS diseases should be checked also.
There are special clinics throughout the country that specify in the care of ALS. Although a lot of patients prefer to spend as much time with their families as possible. There is also a higher incidence of suicide and assisted suicide with this disease.
Letting hospice nurses become involved in the end is very beneficial for families and the patient. Don’t let the word hospice alarm you these nurses can work wonders , and are trained in the care of what the patient may need to keep them comfortable. They can offer support to the family also.
It would be beneficial to get a second opinion , But start treatment while you are getting that second opinion. Do not prolong treatment do to denial it never hurts to be too proactive. Any treatment that would be offered would help any central nervous system disease could not hinder.
Something that should be approached with the patient is advanced directives so that the patient can make decisions regarding his own care and what he would want to happen when he can not longer make that decision
There is no known cause for this disease although it may strike at any age is usually between 40 to 70. There is also no known cure. But there is much research being done and progress being made. There is one man who is an exceptional survivor and has lived 33 years since diagnosis has gotten married and fathered 3 children, unfortunately my friend did not last more then 2 years.
I hope we can keep this research going
