Giving up hope

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RobinMc5050

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Is anyone having problems with staying positive? I am about ready to just quit eating and drinking so that I can go out quickly. I’m trying to work on their logistics right now. Does anyone else have a better idea?
 

Mary2

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My Pals seems fairly happy right now. He does take an anti-depressant as do I and this helps. He zooms with family about once a week and this helps. He has always been a news junky and still gets to do this. Maybe if you want to you could share a little bit more about your situation. The disease often takes 5 to 7 years to progress and wanting Death With Dignity at some point doesn't necessarily mean quitting eating and drinking today. We are here to support you and to listen. Very glad you found the forum.
 

Nikki J

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Everyone has their own point of what they can live with. If you don’t live in a state with death with dignity laws vsed ( voluntary cessation of eating and drinking) is one option. If you choose that I encourage you to work with hospice so that you can have medicine to keep you comfortable. One of my aunts chose that. She went to an inpatient hospice but that was another country. A friend did it at home as did one of our late members. All of these people were very debilitated
people who are more endstage also choose to increase their comfort medication

from what you have said and your profile I think you are limb onset and recently diagnosed? If you are still well nourished and breathing is good it will take longer
 

Bry2k200

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My mother and my uncle left this way. Don't do it, I want my mom back and I'm sure your loved ones will suffer just as much. Talk to your doctor and don't give up. I wish my mother had.
 

KimT

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Of course, it's your choice. Before you make a decision, are you open to trying Remeron? That's an antidepressant and can make all the difference. As Nikki says, there are other options to ending it that might be more comfortable.
 

affected

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Please do use this place to talk more about your concerns and your wishes.
It is totally your choice, but we would like to help you examine the choices.
Don't feel you should make a choice based on what it may or may not mean to anyone else. We will help you think about what is best for you, and then only you can make that decision.
I couldn't agree more that everyone has their own point of what they can live with.
 

Jimi

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Better idea? How about trying to live and make the most out of the crappy hand you were dealt. Don't dwell on the things you can't do and don't expect things to be the same. Adapt to your new way to survive.
I'm fairly sure there's something after this life, but what if not? Might as well give it your all and live for as long as you can. It probably feels overwhelming now, but you will be surprised what you can adapt to. Eat and enjoy whatever you can and get a feeding tube when you need to. It's not bad. Figure out how to automate your surroundings and how to be comfortable and minimize your required care. You can do it if you want to try..Jim
 

lgelb

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Please, let's not bring religion into this thread -- there's a Forum for that -- and maybe not loaded words like "give up" for a new PALS.

Robin, one thing the diverse personalities here can probably agree on (besides that ALS sucks) that a diagnosis in July can still mean a lot of emotional turmoil in October. But you don't need to feel positive or any way in particular right now, or ever. We control how we respond to our feelings, not what they are.

We are here to support you in your own best choice -- live till you can't, or opt out early, now or later. You are never tied to anyone else's timetable.

On the other hand, the early months of knowing you have ALS can be a good time to explore the limits of what you can still do, what resources you can tap, to stress-test your interest in both continued life and self-directed death, knowing that there's always an off-ramp.

Best,
Laurie
 

Jimi

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Never fails. No matter how careful I try to be there is always something. I didn't think I dove deep into religion. Oh well. I'm not sure what was wrong with my post.
 

affected

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Jimi, it's not diving deep into religion, it is discussing religion full stop.
So triggering for so many and can become a flame war so quickly when we are here to support.
 

Sammy88

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Hi Robin, like you I struggle with staying positive. Some days are definitely harder than others. I'm 53 recently diagnosed in August. I hate this disease it seems so unfair. If another person who isn't dealing with a fatal illness tells me to just live each day as my last I swear I'm gonna head butt them. The ups and downs of emotions with this disease totally knocks you sidewards. I understand your pain like most on this forum. Please keep talking, have a good old moan , it helps me .
 

MarkD

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I am 59 and was also diagnosed in August and I see the string is titled "Giving up Hope".

I have had fasciculations since April 2021. However had an EMG on 1 August, and was diagnosed with a Motor neuron disease. They won't say it is for sure ALS at this point, to rule out other things.

As of this writing both arms have gotten weaker and smaller, and my hands have gotten smaller and are very weak. Also I have lost the ability to take deep breaths and the automatic breathing that you do when you sleep has been compromised. I recently went about 10 days without very little sleep. However I got a BIPAP machine two days ago and it is now helping me to breathe at night.

I won't talk about what gets me through every day and gives me hope since it seems to be triggering and against forum rules, but you can check out what gives me hope in my post in the Off Topic/Religion Forum if anyone wants to check it out.

And yes ALS does suck, and while I am saddened, about what is happening to my body, and what I am loosing, and the impact it has on my family....even with all that, I still have hope.

I mean I am going to an ALS Clinic, getting the pills, and also getting things going with the VA, so I do have hope that my time and functions will remain longer, but my real hope is something else.
 
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lgelb

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Welcome, Mark. I added your background from your profile so people would have some context for your post in this thread. You are also welcome to start a thread introducing yourself as you await your second opinion or any confirmatory tests, and there are vets here for any questions around how to get started with the VA.

Thank you for respecting our use of the Religion forum for religious content.

Best,
Laurie
 

MarkD

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Yes I see you have added text and such to my post. Just for accuracy sake, I have been diagnosed with ALS as of 9 August. Thanks, Mark
 

Nikki J

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Some posts were moved to a new thread in the VA subforum as this thread was straying off course and the new topic was important
 
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