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tripete

Very helpful member
Joined
Dec 5, 2014
Messages
1,002
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
At each of my doctors appointment they are always concerned about my wife and I being depressed. There answer is to prescribe antidepressants. Their supposition is that we should not be depressed. Why?

I have been diagnosed with the second worst thing I can think of (the worst being something like Alzheimer's where I have no control over my mind). The more and more I think about ALS and what it does, it is quickly becoming the worst thing I can think of. Someday my mind will work as well as ever but my body will be dead. Kind of like being buried alive.

We have a disease that will take every single thing away from us in a relatively short amount of time. Almost daily we suffer with another loss of who and what we where. We will see our loved ones become slaves to our disease as they try and take care of us. Our dreams are dashed and all hope is removed. We will die with our minds fully intact and not be able to do a thing about it. To me the question is not am I depressed, why shouldn't I be. No the question is what I am going to do about it.

For me mood altering medicines are not the answer. I pass no judgment on those who do use antidepressants, on the contrary I completely understand. As I understand it, we will all eventually 'choose" to die, unless we are fortunate to have some other disease or accident take out lives. I am now 49 years old and what do I have to look forward to but being paralyzed and kept alive by machines. At some point either I or my loved one will have to choose to end the life support, is this not a choice to end my life?

I am convinced that the point of this type of life is for benefit of others and not for me. And to me that has to be why we choose to deal with this each day. It is my hope that during the course of all this that I do not become a burden to those I love and care about. I of course know that I will be a physical burden, I hope though that I am not a mental burden by being mean, angry, or nasty to them.

Depressed -of course. What I choose to do with it is to seek to love those around me as best as I can.
 
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Re: Depresion

Tripeete, your words touched me profoundly. After losing my husband 4 months ago,I still am tormented by why he didn't fight harder,or agree to the peg tube sooner or why our loving family wasn't enough to cancel out the losses or a million other questions. You words gave me so many of the answers (that I probably knew deep inside!). Know he lived as long as he did for our benefit, because we weren't ready to let him go. Thank you my friend for reminding me of the horrors of this disease for all of us, and what it feels like to be a PAL. Selfishly, I just want his presence, despite the struggles of being a caretaker, and KNOWING he is free and happy now. You spoke for all the PALs today. Hope you share your letter with your family. Hugs to you as you continue this journey.
 
Re: Depresion

Tripete, there's a difference between depression and sadness, or, if you will, a pathological thought process and a non-pathological thought process. If your emotional state is such that you're making good decisions and positively impacting those around you, then things are good. On the other hand, if your mental state is making bad (or no) decisions, then I would urge you to use anti-depressants.

Many people are opposed to mental health drugs. I was, too, in 1996 when I started using them and I resented having to use them. But today's knowledge of pharmacokinetics is much better, and I'm REALLY, really glad that I'm using anti-depressants.

Your choice, of course.
 
Re: Depresion

At first my feelings about being depressed were similar to yours, tripete. I thought it would be abnormal NOT to be depressed! But as time went on I found that I was moving from the normal feelings of sadness, grief and fear, regret for things not done, to murkier waters. Every problem, every negative comment from my husband brought tears. The difference from earlier was that I simply gave up. I couldn't begin to see any way for ward much less solutions to the problems of my increasing disability. I was just a pathetic lump who couldn't imagine anything positive. Of course, I didn't see this as clinical depression, just a normal response to a bad situation.

I began to have panic attacks when left alone in a room out of earshot of my husband. That was so physically awful that it got me to my doctor. He put me on Zoloft, an antidepressant helpful for panic attacks. After a couple of weeks the panic attacks were gone and I stirred from my mental paralysis. I began to find easier and safer ways to do things, use adaptive devices with joy not self pity, and generally enjoy what I had rather than prematurely mourn the future. I could think and plan for that future in a normal state of mind, not a state of hopelessness, despair, and inability to see anyway to make things better. Getting my brain chemistry back to normal made things easier for my husband as well. My tears had left him feeling helpless which, for a man, is so often expressed as anger. Without me triggering that response in him, things are so much better!

I don't know at what point we slide from being naturally bummed out by ALS to having the changes in brain chemistry that defy efforts to change your thinking. When your brain can't see the light, only the dark, you no longer know that light ever existed. There is no light to strive for. Antidepressants fix that.
 
Re: Depresion

Well said, Tripeete.
 
Re: Depresion

Interesting how the CALS and PALS see it differently (Cheerleader being the exception here). Depression is an emotion. It is no different than anger, happiness, frustration, love or sadness (all of which cause chemical changes in the mind, interesting how there is no pill to moderate love for example). The question is what do we do with it? It has been the question for 1000's of years regarding emotions. It is why the Apostle Paul says; "In your anger do not sin". It is no different with any of our emotions.

As much as I am a victim of this disease I am not a victim of what I do with my emotions. I can choose to be hateful or to love. My nature wants to hate, but I must try with all that I am not to hate but to love. I can do this without medications (again I do not say this to judge anyone who chooses medication), just like when I am angry I can choose not to break things or scream an holler, or like while I am madly in love with my wife, I can choose not to go out and buy her everything and be at her feet day and night, knowing I must behave responsibly.

So while without question someone with a terminal disease, that will take everything away from then and the make them choose to live or die, is or can be depressed, the question remains what will you do with it?
 
Re: Depresion

When doctors talk about depression they are talking about a clinical condition with actual changes in the chemistry of the brain.

When someone talks about 'feeling' the emotion 'depressed' they are not talking about the same thing as a clinical depression.

So Pete when the clinic are talking to you and your wife about depression they are not talking about an emotion, even though we use that word commonly in everyday speech.

I had a feeling that I was always constantly silently screaming inside. I began homeopathics and it helped a lot but I was ignoring my deep exhaustion. I had a micro sleep and totalled my car then began to have anxiety attacks when driving. I just had to get myself together as Chris was fast losing the ability to drive.

I went on antidepressants and kept my head above water all through that disease.

For Chris it was very different as he had FTD so he lost so much of his mind from very early. Antidepressants did help take the savage edge off and he began to sleep.

There is nothing lacking in a person who develops a clinical depression and seeks medications, some people feel a real stigma about it, I was glad that even though I had wanted to avoid these medications I did use them to good effect.

Pete we are indeed dealing with the very worst disease and situation, and you PALS are amazing.
 
Re: Depresion

Pete, I understand and respect what you say about depression being a natural emotion, but as Diane pointed out and as my doctor explained, when that emotion goes on long enough, there are chemical changes in the brain that make it impossible for us to decide to change our outlook. If one is clinically depressed, ALS could disappear and it's possible that the depression wouldn't. That's where the drugs come in.

I am still devastated at what ALS is doing to us, but I can now chose to cry privately, rather than breaking down uncontrollably in public, and I can now enjoy the good moments we have instead of feeling that dark shadow even when he's smiling at me.

I don't think the doctors are really trying to minimize our pain; I think they are trying to allow us the opportunity to wring whatever joy we can out of what remains. If you are able to corral the pain and feel the pleasure, then you don't need those pills. Should you ever experience those changes in brain chemistry, please know that it's not a sign of weakness.

Becky
 
Re: Depresion

Good discussion, Pete. Of course we are sad and "depressed" I hate that question at clinic and always answer with, "doing pretty well all considered"

But I don't believe I've hit the clinically depressed definition. I can still get up and make choices to find joy in people and the things I can still do. There may/probably come a time when making that choice is not possible and that is where using antidepressants will become and option for me.
 
Re: Depresion

Pete you've opened up a great discussion on a topic that many people find hard to discuss.

Tillie has hit the nail on the head pointing out the difference between changes to our brain chemistry and the emotion tied to the word depression. I think the chemical changes can be very gradual and we may not even notice the effect it is having on us. Our outlook gradually clouds over and we can lose sight of a lot of what is still good in our lives. To quote Diane "When your brain can't see the light, only the dark, you no longer know that light ever existed."

When the specialist suggested an antidepressant to me it was the last thing I ever thought I would end up taking. I agreed to try it as there is a certain "What have I got to lose?" mentality that settles in with ALS hanging over you. I tried Celexa for a month and it was terrible. Constant nausea and no benefit at all. She switched the prescription to Wellbutrin and it has been a home run. It has really helped with perspective and outlook. Looking back it was a great move. Everyone is different but I really would suggest that you consider it. It might just be a great help. If not, you can always stop. Good luck Pete.
 
Re: Depresion

I would also suggest that starting an antidepressant early is the best way to approach it because if you wait until you are severely depressed, then the chemical imbalance is really out of whack and getting it reversed with medication is a much harder task. Most of these meds take anything from 2 - 4 weeks to show effect even when only mildly depressed. This means if someone is severely depressed they have weeks of agony to go through still and if the first med chosen (like como reports with his experience) then you have even longer til you get relief. The meds can be started in smaller doses and increased if needed. We did this with Chris, started on a half dose, he tolerated it well and so we moved up to a higher dose and he started sleeping for the first time in 18 months!

It's a bit like pain - hit pain early and you need only a small dose, hit it often and keep it at bay and you still only need small doses and are kept in a good place. Let pain build and it takes far heavier meds to climb over the high level.

These antidepressants are not 'happy pills', I never felt great, I just felt I could cope and give my best to Chris.

I agree this is a good discussion to open up.
 
Re: Depresion

Again every emotion changes are brain chemistry, this is a fact. And again I am not saying any thing against those who choose to use antidepressants, and again it is interesting to note the difference here among the CALS comments and the PALS comments. I will die, most likely within 5 years or less as my ALS was respiratory onset (the worst as I understand it), I am learning to live with that, the question again is HOW will I live with it?
 
Re: Depresion

Steve is respiratory onset. He contemplated suicide for two weeks when he was first diagnosed. He was up most of the night walking arou d,agitated, and very scary weird. I had never seen him like that. He would barely talk. I was up following him around,carrying a phone, trying to work, calling people to check on him. He went a week at a time without showering. That is how he showed up at the doctors. She was very afraid for him. At the point he was choosing to live or commit suicide. He told the doctor this. He decided he would try the meds.


I can't say it is all roses Pete. I started on meds because I have always had bad anxiety and I could no longer use exercise and time for myself to cope. I was sitting at work crying all day.

I don't think depression can always be controlled. Sometimes you do need the medicine to help you simply maintain and no get worse mentally.

They have told Steve using the trilogy and cough assist regularly has helped maintain his fvc, but his breathing muscles and limbs do continue to weaken. No one has a magic answer. We simply try to make it through this journey providing all the love and support we can.It definitely isn't easy and everyone makes their own path.
 
Re: Depresion

My problem wasn't daytime depression, it was waking up at 3 am and not being able to stop the gears in my brain from spinning. Thinking about my condition.

When that started I decided it was time to talk to the nice head shrink lady.
 
Re: Depresion

While we may be unhappy (or depressed) about our situation, I think it can be helpful to at least pretend to be happy. For one thing, people treat you differently if you appear to be more upbeat than all sad and gloomy. And also, in pretending to be upbeat you can help fool yourself into thinking that you are more happy then you are. I like to think of the song “I whistle a happy tune” as a way to feel less unhappy, less afraid.

But I also agree with what others have said – clinical depression is different than just being “depressed”. I’ve never tried antidepressants myself, but I do believe that they can be useful.

Whenever I feel afraid
I hold my head erect
And whistle a happy tune
So no one will suspect
I'm afraid.

While shivering in my shoes
I strike a careless pose
And whistle a happy tune
And no one ever knows
I'm afraid.

The result of this deception
Is very strange to tell
For when I fool the people
I fear I fool myself as well!

I whistle a happy tune
And ev'ry single time
The happiness in the tune
Convinces me that I'm not afraid.
 
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