Life With ALS.com
+ Diagnosed Aug 2005
+ Bipap March 2007
+ PEG July 2007
+ Trache and Vent July 2008
Still Living, Loving & Laughing
As I write this I have a lot of thoughts rolling around in my head.
The reason for this page is to try to explain something that is hard for most people to accept.
I keep getting asked a few questions like:
The reason for this page is to try to explain something that is hard for most people to accept.
I keep getting asked a few questions like:
- I was recently diagnosed, how long do I have to live?
- The doctor told me I have between 2 - 5 years. I’m devastated!
- It started in my legs, what will it affect next? How soon?
- How long before I am wheelchair bound?
- What’s next?
- How long before I start having trouble swallowing?
- How long before it affects my breathing?
- Etc etc. etc.
The list of questions goes on and on. People want answers.
Unfortunately there are no answers to these questions.
This disease affects everyone differently and starts in different areas of your body.
For some it starts in their face, affecting speech, talking and swallowing, this is called bulbar ALS. For others it starts in their legs or hands & arms. Eventually it spreads to other areas and at some unknown point the diaphragm is affected thus compromising a person’s ability to breathe. When this happens a person has to choose whether they will accept a tracheostomy and ventilator or death. Although a lot of people last for years using a Bipap.
The time frame for the disease to progress from one area to another varies considerably between people, there is no way to tell how long or how it will spread. I know people who have died in less than 1 year from diagnosis and know some that are still living after 20 or 30 years. What makes the difference? No one knows but I have noticed that the long term survivors all have one thing in common
- a positive attitude!
Those that can’t accept what is happening and are bitter, angry and depressed don’t last long.
So the bottom line is - there is no way to tell how fast or what part of your body ALS will affect next. Don’t fixate on this! Enjoy today and don’t worry about tomorrow!
The time frame for the disease to progress from one area to another varies considerably between people, there is no way to tell how long or how it will spread. I know people who have died in less than 1 year from diagnosis and know some that are still living after 20 or 30 years. What makes the difference? No one knows but I have noticed that the long term survivors all have one thing in common
- a positive attitude!
Those that can’t accept what is happening and are bitter, angry and depressed don’t last long.
So the bottom line is - there is no way to tell how fast or what part of your body ALS will affect next. Don’t fixate on this! Enjoy today and don’t worry about tomorrow!
