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We were warned that one should never mess with Oxicodone for this purpose. It tends to make people so sick it is not effective. I understand Morphine is another animal.
 
Scotiaspirit, my husband reached that point where going to appointments was just taking more out of him than he had to give. He went on hospice. He would not use his bi-pap and could not or would not (not sure which) take in enough calories even with the tube. He fell asleep in his favorite lounge chair on July 21st and passed very peacefully at home with no one there but me. While I miss him dearly, I would not want him to stay around longer only to suffer. Everyone has their own point where it all becomes too much. Tom never completely lost function in any of his limbs and I am glad he did not have to endure that. He was, however, so fatigued that all he could manage to do was sit in a chair or lay in the bed. I am glad the Lord saw fit to take him before he was unable to move
 
We were warned that one should never mess with Oxicodone for this purpose. It tends to make people so sick it is not effective. I understand Morphine is another animal.

There is a reason Oxy makes people sick. They take too much of it. The starting dose I was given was 15 mg twice a day. My neuro and I discussed this dose knowing the risks and benefits. I decided to take 1/4 of one tablet. I took it under my tongue so it hit me fast. After the slight dizziness wore off I felt much better and my pain was reduced about 50%. That level was tolerable. It also made me feel much more positive. The next day I took the same dose. Over the course of the next month or two I either took 1/4 once a day or 1/4 twice a day. That's all I needed! It worked! I was unable to get out of bed because of severe pain. I weaned myself off by taking less than 1/4 when the pain was under control. Now it's been a couple of months since I've taken it.

I've known people to pop a 15 mg tablet or even a 30 mg tablet when they had a knee replacement. Of course, they throw up and are sick. They have not been told about slowly increasing the dosage because they are in acute pain and it should be short lived.

I know others with ALS who take as little as 1 mg. 4 times a day. That small dose works for them.

Addicts can work up to 200 + mg a day and not have any side effects and that's why they keep increasing it. They want to get high. I just wanted to function.

Used with caution, these drugs can and do help.

If my State had medical marijuana, that would have been my first choice. I do take Charlotte's web and I think it helps with cramps.
 
Oh, I did not mean for pain control on the Oxy. I know it's effective for that and safe too used as Rx'd. I had a terrible tooth/jaw infection ten years ago from a root canal that when very wrong, and it was seriously the only thing that could keep the tears out of my eyes for about a week. People can criticize the use of Opiates in non-terminal illness all they want, but I think at about the point you pass out from pain (I did!) it's time to consider.

I mean that some patients with various terminal conditions(I was not implying you were thinking of it, either!) have stocked it up for a Final Exit plan and both failed and got terribly sick.
 
I'm a CALS and I think about this (almost) every day. It INFURIATES me that, not only is assisted suicide unavailable in 48 of 50 states, it isn't even spoken about. I think that when my PALS goes, I might get active in the cause. I know that if it were me, I would want to go drugged to the gills, high, happy, and sleepy. And I find it frankly absurd that you can put a pet down to save them pain, but you can't do the same for loved ones that ask for it in the first place.

Having said that, we were at the same place a few years ago, and my PALS is still going strong. Most days I can get a smile out of him and on our best days, I can make him laugh. He lost 95% of his muscle mass within 2-3 years, a devastating blow to a former skateboarder/circuit board engineer. . . but I don't think either of us would sacrifice a day of that for a premature RIP.

Life is different, for both us. Hard, obviously. Sisyphean, of course. But, you know, you adjust to the challenges.

Don't give up just yet. You might have many good, albeit difficult, years ahead of you.

If not. . . I've heard of other legal options, which I won't mention here. But please, please, give yourself a chance. It doesn't have to be a death sentence and it's far, far too early to succumb to this [many expletives deleted].
 
To all,

At the time I started this thread, I could only walk a short distance with my walker around the house, and had a manual wheelchair to go places. The manual wheelchair was extremely difficult for my husband to get me to our truck and then to help me in the truck.

To my chagrin, things have changed. I got a PWC and I can get around and actually do things around the house. We looked at a handicapped van yesterday, and I'm pretty sure we are going to get it. The company will be adding an easy lock and I will sit on the passenger side.

As long as I have some quality of life, I want to be around. Once I am bedridden, I will have to reassess how I feel and decisions will be made.

Thank you for all the viewpoints on this touchy, but necessary subject.

Hugs,
Deb
 
Hugs to you Deb. I told my husband and brother-in-law your story today because you inspired me and I hope that Steve can see what using his chair will do for him. Keep it out of the pool. Hahaha
 
Wendy, we've covered a safe, legal option here many times and you can mention it any time you like. We don't refer to it as "assisted suicide" because that's not what it is. Read through this and other threads. I just don't want newbies to come in the middle as you did and conclude there's no way to help their PALS have the ending s/he wants.

Also, we don't prescribe length of life for others here. Everyone is different and most deaths here fall somewhere between active intervention and "purely natural." The P/CALS is the unit best equipped to make those choices. I'm glad you and your fiancée are enjoying life for the time being, but having been through the horror of a new diagnosis evidently a few years back is not the equivalent of the tradeoffs you may need to make later or the tradeoffs someone else who is reading this has to make now. And if/when those come, we won't write your story for you, either.

Best,
Laurie
 
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Fair enough, I agree. Thanks for the correction, Laurie! It's a tricky subject and only the C/PALS know their best decision for their situation.
 
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Faith, congratulations on the chair and newfound freedom!!

I'm glad you wrote of this change of heart. I think it happens often, perhaps more often than people acknowledge, at various stages of the disease.

My guy fought the chair with everything he had, but the day he received it he was as excited as a child with his first bicycle. If our PALS are fortunate enough to to have the tools and the support, life can be worth living longer.

Those options are still available when the times comes, thankfully. In the meantime, squeeze every moment you can out of life!!

Becky
 
Hello everyone this is my first post but have been visiting since April. I have found all of you so helpful from both a practical and emotional standpoint. I am my husband's CALS and what I am struggling the most with is that he has never communicated to anyone what his end of life wishes are. His doctor spoke to him about it a year and half ago and his only guideline was that he didn't want any procedure that set him back significantly . The director of the local ALS nonprofit came to our home twice to talk to him about what he wants and he basically would not engage in the discussion. The director's advice to me was that I would have to be the one to make those decisions as he has met a number of PALS who do not want to know about it. I am so uncomfortable to even think about making those kind of decisions for another human being. Any thoughts or advice would be greatly appreciated.
 
In recent years, I've seen several deaths in my family. In every case, plans reduced suffering. When we're not sure what a person wants, usually because they refuse to talk about it, that increases suffering all around.

When a PALS, and a CALS, and the legal papers in the medical record are all in accord, then everybody can work together to ensure the PALS gets their choice.

Just my opinion.
 
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