Friday, May 11, 2012
Monday, May 7, 2012
So you would think that when you go to a hospital that the doctors and nurses will know how to handle patients with ALS. This is not the case. Although I had good care from the doctors and nurses. Some had no clue how to handle me. Now keep in mind my family has several nurses and a few doctors so this is not about bashing them or any Doctor or nurse. The point that I am trying to get across is the awareness that needs to be addressed. When I was in the hospital I had great care even though a few nurses admitted that they have never dealt with ALS patients. Now many are probably saying why go to that hospital? Well here is my reply: it's not that they aren't qualified because they are and it's not because they are so busy that they don't care because they do care very much. I feel and that that ALS is a disease that is so misunderstood. Many treat ALS like MS. A nurse asked me if I would ever be able to over come this disease. I looked at her and smiled and said maybe if we could find treatment and most of all a cure. She look at me and said they don't teach about how to help people with rare disease. Hearing what she said was not insensitive. Matter of fact she was interested and wanted to know more. She was in my room asking me many questions about the disease and asking how she can get involved. Later she came back to my room telling me many of the staff heard of ALS but didn't know much about it. Hearing how she was able to go to others and ask others about ALS made me feel good to know that people really do want to know about this disease. So the next time you are having thoughts and doubts about your doctors or nurses know that most of them are qualified and they really do care about how you are doing. This disease is a disease that people are uneducated on and also that is under funded on. This disease has been around for decades and yet no cure or even treatment. but yet aids was huge in the 80's and a cure was found almost right away. Don't get me wrong I am for cures for all diseases but very frustrated why no cure for the thousands of people suffering and those who have died from this relentless disease that shows absolutely no mercy. So when you get the chance to raise ALS Awareness do it because you never know who you can touch and who you can affect. All it takes is believing in what you say. Some will listen and some won't all it takes is one to make changes and one to care. So even if you think someone knows about ALS, think again and ask anyways. If you have a voice use it.