Seeking help and support - Amyotrophic Lateral Sclerosis (ALS) Message Board

Slaughter1 · 01-24-2002, 12:34 PM

Hello this forum doesn't look like too many people visit here. but I will speak out anyway.
My father was diagnosed with ALS in Aug. of 2001. Since then he has declined rapidly. He haas tried every clinical trial that has any hope. For most of his life he has worked in the fields that deal with certain kinds of metals and nucelar waste material. I remember him coming home from work, and the frame of his truck had been eaten away from toxic waste materials that were in the air. I truly believe that the researchers of ALS should look into certain metals and waste material. There could be a possible link between them.
There are three types of ALS...
1) Sporadic ALS
2) Familial ALS (hereditary)
3) Guamian ALS
The third one gets to me....why is there a link with people living on the island nation, Guam and ALS?
Has anyone taken the time to find out why? Are there certain reasons those people have a higher chance of ALS? I truly think that once they studied the area and the soil, possibly the water there might be the answer. Now I maybe over reacting here, and maybe they are studing it. but, I havn't heard anything about it. I never thought that I could lose my dad to such a horrible disease. I would do anything, if I could, to stop this.
I have told my family that I will stay home with my 8 month old daughter and my father. I will be the care taker of my dad. I guess, I just need some suport and information on details of the disease. Informaton that they don't tell you in the paperwork. For, instance are "ALL" his muscles going to shut down? even his eyelids? what things do I need to prepare myself for? any support or detailed information would be haelpful. I am 21 years old and have a family to take care of. now the man who took care of me, I am responsible for.........

RLB DAU · 02-09-2002, 09:30 PM

I know about ALS because my father had this monster of a disease that killed him more than 55 years ago. My heartfelt sympathy for you and him. So far as I have been able to learn, medicine is no closer to finding out what causes it or how to slow it's path of pain. I think that it does follow a somewhat sameness in the way it robs the victim, little by little, of all life. When my father was first diagnosed, he was 43y/o and he died three years later. At that time, we were told by the medical profession, quote, "if you are lucky it will kill him in less than two years, if unlucky, it will be longer". They were right on both counts. I don't think that the medical profession today is quite so blunt, but in hind sight, for us, it was the best thing to have been told since we did not expect him to recover. We were not told about all the obscenities that would happen to this man as the disease progressed and I'm glad he did not know what was in store for him. You have indicated that you want to know what to expect, and I'm sure you want to be able to give the best care possible. However, I hesitate to go further with my descriptions of what is going to happen without your full assurance that you want to know. You cannot take care of him without lots of help from friends,neighbors and an understanding nursing profession. I give physicians almost 0 credit for understanding and sense of humanity toward this. It may be somewhat different now as opposed to the early 40's whwn we were faced with this didease. At that time, he was considered somewhat of a freak and oddity sine the disease was so rare. He was treated at alarge and prestigeous state medical teaching hospital for a short time, but he was removed by us because one of his nurses was stealing money from him at night. She thought his speech was so bad that he could not be understood. His family could UNDERSTAND him and we knew he was telling the truth. The hospital refused to take any action on his behalf regarding this nurse who was a thief, so we, his family brought him home and he remained at home until his death. I would be more than willing to discuss this further with you, but I want to be sure just how frank and explicit you want me to be. Thanks for listening RLB DAU

hyper · 02-20-2002, 09:24 AM

I too had a father die of this horrible disease. My Dad died 16 years ago. It isn't painfull, but it is a disease that robs the person of all their dignity. I saw a stong man, in a short five years, turn into a very frail helpless man.

What was so hard to see is the way people looked at him. Like they thought he had aids or something. It hurt him so bad, because you see, ALS patients never lose their thoughts. Their brains work all the way until the end.

My heart goes out to you and what you are doing for your Father.

AnnAldrich · 02-25-2002, 04:49 PM

Dear Sir,

My grandma was just diagnosed with Lou Gherig's Disease last Tuesday. She was 72. I say was because
she died on Thursday. The doctors were stumped. It took too long to diagnose her problem (over a year).
And she knew what was going on. However, from what I've read, I don't think that it's a disease that
really matters if you know or not. It has a final ending within a short timespan.

I've done a little research by now but there seems to be no absolute facts about it except that it is a short
disease that is terminal. They did an autopsy on my gram to see if they could better understand the disease.

She didn't have any of the "typical" symptoms. I've not learned what those are yet. It seems that all the symptoms I've seen so far my grandma had almost all her life. And they wouldn't be diagnosed as LGD because of the short timespan people live with it.

All I can do is feel good about the time I spent with her, know that she didn't suffer at all, and learn more about it in the hopes that we can find a cure for it some day and better understand it.

Ann

hyper · 02-28-2002, 07:02 AM

So sorry to hear about your grandmother, but I agree with you about it may have been better that she didn't know. My Dad never would admit that he had ALS until the very end.