Life With ALS.com
+ Diagnosed Aug 2005
+ Bipap March 2007
+ PEG July 2007
+ Trache and Vent July 2008
Still Living, Loving & Laughing
This is a subject that disturbs me greatly. I find there are too many people who focus on the fact they are going to die. They are convinced they are dying and will die within a few months or years and this becomes their only focus.
While there is that possibility, everyone has to die sometime, I still believe that ALS does not have to be fatal! This is also supported by medical professionals who I have come to respect. If we are willing, and able, to make use of the current technology available to us we can live indefinitely.
The most common reason for PALS to die is from respiratory failure, so if you get a trache and vent, death, in most cases, can be avoided.
I know I am in the minority as there are only about 5% that do what I have done. So I have always experienced a lot of objection. But times have changed and I would like to see that statistic change.
There are a lot more than 5% of us that are in a position to trache and vent.
I have discussed the subject of getting a trache, or not getting a trache, in another page so I am not going to expand on that here.
Lately I have corresponded with far too many people who have given up and are focused on their ultimate demise. (their belief)
They are devastated that they will not live to see their children grow up, graduate, get married and see their grandchildren.
This does not have to be the way things turn out!
As I have stated above, if you are willing, and able, to get a trache & vent, a PEG (feeding tube) and use devices like a power wheelchair then life can still be fruitful and fulfilling. Life does not automatically have to be over!
Don’t let anyone tell you differently! It is your choice, don’t let anyone else make the decision for you. This is a choice you have to make and then never look back! The choice is yours based on your own situation.
I am reading more and more devastating articles written by caregivers and family members of someone who has ALS. They are destroyed by the ALS diagnosis their loved one has received and can’t quit crying. They are angry and extremely bitter. If you are a caregiver who can relate to this then please stop and change the way you look at ALS. You have a great responsibility to be strong for the one who has ALS, focus on the positive and get on with helping them enjoy each day as best as possible.
There will always be “down” days and that is to be expected whether you have ALS or not, but don’t make this the norm.
I also get very upset with some PALS for always being angry and not being able to rise above their depression. There is medication to help with this if it is a result of Emotional Lability. Don’t Focus on Dying!
Don’t believe anyone who tells you that you have to die because of ALS.
If you have decided you don’t want a trache & vent, or if your situation does not allow it, I respect that. Everyone’s situation is different and unique. My advice does not change, accept your decision and don’t focus on death.
I have said many times before that I realize this does not work for everyone and I respect that. We each have our unique situations that will dictate and influence what we do. I did not post this to upset everyone. But I have read too many posts where newly diagnosed people are devastated because they were told they were going to die really soon. That is not necessarily true and I am trying to offer some hope that life does not automatically have to be over. I quite plan on dying of old age. I understand that life on a vent is not for everyone but for those who can adjust to it life can continue and be very enjoyable.
Again - I still feel, regardless of your decision, that we should not focus on dying. That robs you of the joy you could be experiencing today.
Get on with Living and Enjoying each day to the Fullest. There is still a lot of Living to be done!
God Bless Each and Every one of Us!
Added: Oct 2009
Updated: Oct 2010