Op-ed on ALS in LA Times

[BethU]

Last Sunday, a physician wrote an op-ed column in the LA Times about ALS and end-of-life issues. He himself has had ALS for five years and is refusing a PEG as well as a vent. I'm surprised that a doctor would reject the PEG ...

I know we all want more publicity about ALS in major media, but this seems not quite the kind of publicity we had in mind. Or is it? However, he does give a very good picture on what ALS does as it progresses, which is missing from many of the "feel-good" kumbaya features we usually get on ALS about how brave and strong and wonderful we all are.:razz:

Maybe Joel or somebody would want to write a rebuttle ...

http://www.latimes.com/news/opinion/la-oe-welsh26-2009jul26,0,5173890.story

 

[Patsy]

Great article and can't say that I disagree!
Patsy

 

[brooksea]

"I like to know where a road leads before I set out on a journey. Right now, one path I could take leads to a place I don't want to go. I am determined not to start down that path, even if others think I'm being premature in my decision. In short, I may well be ready to die before my family and friends are ready to say goodbye. But they know that, as I face my diminishing list of the 100 things that make life worth living, the choice of quality over quantity has to be mine to make."

Damn, that made me cry.

I respect his wishes for his "100 things."

This does bring to light the issues faced by pALS and it is a pity there is no alternative, like a TREATMENT! or a CURE! :-x

 

[joelc]

It's not that I'm a quitter. I have struggled against adversity of one sort or another all my life, and those challenges have helped prepare me for what I face now. I still delight in accomplishing difficult things, and I always wear a bright red ALS wristband that says "Never Give Up."

He is contradicting himself! I have repeatedly found this in people who choose to die rather than live. He states he is not a quitter then says he is going to quit living because of ALS?

He is concentrating on things he can no longer do instead of focusing on what he can do. Yes, this list will change, but life is all about change and adapting to new circumstances.

He also talks about some of his patients that he watched go through this and wants no part of it. He is forgetting that ALS rarely affects the mind. Since we maintain our intellect and with the available technology we have today there is very little we cannot do.

Yes, my "100" list has changed, but what is wrong with that? I am doing things today I never would have done if I did not have ALS! And, I would never have met all you fantastic people who I have grown to deeply LOVE! My life is extremely richer because of ALS than it was prior.

As far as being a burden - that is your choice. If you really love someone it is not a burden, it is a privilege. Attitude is foremost, if you are bitter, everyone will wish you would die, but if you accept what is happening and adapt, and are happy, then so its everyone else.

If you prepare for what will happen, before it happens, life is much easier on everyone. Like getting a PEG before you are aspirating food or lost precious weight you will never gain back in the right places. Or, getting a trache and vent before you are on your death bed, this way the recovery time is insignificant. Wait too long and recovery can be a nightmare.

Do I like the fact I have ALS? Do I wish I did not have to experience this? You already know the answers! But I do have ALS and plan on making this the easiest I can for my wife and family. It is all up to you - it is a choice each of us has to make.

Forgive me for saying this, I don't want to offend anyone, but I feel profoundly sorry for people that can't see past the disease and can't find joy in living.

Am I afraid to die? Absolutely not! I am a Christian and take great comfort in the knowledge I will go to heaven when I do die. So, why am I hanging onto life when heaven is going to be so much better? God has not given me permission to give up! I like to think there is still something I can contribute to society and my family. I am not ready to die yet! I am having too much fun!

 

[brooksea]

Joel, how could you offend anyone with that attitude!

Perhaps this doc has seen so many tragedies that he can't comprehend that his life doesn't have to be one of them.

Still don't know where my husband stands on all this (sorry to sidetrack the thread). One day he's open next day he's closed. (And I know Joel, your offer is still open for phone call! He ain't ready!)

 

[Zaphoon]

I think the doctor is wrestling with his own philosophies. He does seem to contradict himself but he is on a road he doesn't want to travel and the choice was not his. I wonder how he would advise a patient that was looking at having to soon decide whether or not to get intubated.

It does make me wonder how his family is handling all of this.

Reading his comments saddened me.

Zaphoon

 

[DgtofTNfan]

"the choice of quality over quantity has to be mine to make."

I thought it was a good opinion piece from one man's perspective and I think we (as a society) have to respect his decision. I don't think he should be held to any other standards because he is a doctor. He is still very human dealing with a disease that even he as a doctor can't do anything about. He can control how he wants to live the rest of his life and I support him or anyone else that makes informed decisions based on their own values.

I encourage my Dad to pursue so much to live and fight so he can make choices but I also do it for selfish reasons. However when he is ready to say enough, it will break my heart but I will completely understand.

Dana

 

[joelc]

Thank you CJ. I am still here for when ever he is ready!

I am here for anyone who wants to talk, just let me know and I will call.

Dana, I respect everyones decision to either live with ALS or die instead. I just find it so unfortunate that people can't find quality in living just because they can't do all the things they used to. It is a choice each of us have to make.

 

[DgtofTNfan]

"..life is all about change and adapting to new circumstances."

I agree with your above statement Joel. Your positive attitude and outlook are truly inspiring.

 

[Connie]

My husband and I totally respect Dr. Welsh's personal decision for how he wants to manage his terminal illness and end of life decisions regarding medical interventions. To each his own.

 

[danjay]

This is obviously a very smart and thoughtful man but like many of you I find it sad that he has painted himself into such an intellectual corner. What I am finding is that indeed my list of 100 things loses entries, but doggone it entries get added too. The touch of my wife's hand on my arm, watching my 9 year old grind up my pills for me, having him tell me he loves me every night as I go to bed. These are new things, things added because of ALS. This is a monstrous disease and it takes so much away. I have no intention of helping it out by giving up more. I intend to keep my list at 100, for every lost entry I will add a new one.
Dan

 

[Wynn]

Joel, you posted a very inspirational message. I wish I could express myself like that.

I may be wrong, but I don't think Dr. Welsh's Christian faith is as strong as yours. The reason I say this is because he spoke of going to "a new phase," criticized religious leaders and said didn't have a right to come to the aid of Terri Schiavo, and he didn't appear to me to be thankful for the blessings he has (I may have a different feeling when I get as bad as he is.).

My Christian faith is everything to me. I'll let God decide when I die--and under what circumstances. Although I know I am chief among sinners; I am going to Heaven.

Wynn

 

[BarryG]

Forget the 100 or 1,000 or million things that you can or cant do, that is not the point. The point is being here, being here for our loved ones, being here for our friends (especially friends on the forum) and just being here for ourselves. I am speaking as someone who can still look after myself but I think that even when I can't I will consider my glass half full rather than half empty. While I respect the doctor's decision about his own life and death it seems to me that refusing a peg is kind of like going on a hunger strike. The only problem is that there is no one to strike against, this disease that we call ALS or Lou Gehrig's or MND doesn't care about our protests or our tears. We have to use the tools that we can get because even though I am not religious I do believe the saying "The Lord helps those that help themselves"

 

[Zaphoon]

In my thinking, accepting a peg is just another way of saying, "I am not quitting!".

Zaphoon

 

[GlenBrittle]

Exactly Zaphoon , Exactly.