Old 09-21-2015, 07:46 PM #16 (permalink)
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Default Re: My Terms

Know what you mean re: the health care dollar machine, believe me when I say people get tired of me going on about it. If you ever need to get your BP up check into the price of nuedexta versus what it is, or the price for a ChatterVox or how there's companies buying the rights to old off patent drugs that still have a market but only one supplier and suddenly raising prices 1200%... I could go on and on and will with little prodding...

And that is the screwed up thing about health care in our country - on top of having to deal the horrors involved with a serious condition you have the added stress of having to be vigilant about being taken advantage of.

That said however, I personally have been very happy with my ALS experience health care wise so far (the actual ALS... eh, not so much...). Oregon is a Plan F state and between that and medicare ( and a good drug plan) my medicals expenses are limited to travel costs to go to the quarterly clinics. The help that the state and local ALSA and SHIBA people gave us along with the doctors office has been nothing short of excellent.

ps: Agreed re: Brittany

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Old 09-23-2015, 04:54 PM #17 (permalink)
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Default Re: My Terms

Hi Charlie, This discussion is a hard one and different people react/relate in different ways. Before I was officially diagnosed I really thought I had ALS and scared myself to death (ha ha) thinking about it. I researched ways to die with dignity, bought some books on the subject online. I thought about moving to Oregon or Vermont or going to Switzerland as was recorded on the PBS Frontline show "Suicide Tourist" . I told my husband all of this and he was quiet but respectful of what I said.

Then I got officially diagnosed. I am not too impaired right now, am taking riluzole, retiring next week and planning to travel and do as much as I can with what I've got. That is what I'm focusing on NOW, but in the back of my mind all the stuff I said in the previous paragraph still simmers. I just don't think about it all the time. I've gotten used to the diagnosis and reordered things.

One of the things that really got my attention was when I asked my husband what scared him the most about all of this and he said that it was picturing himself coming home from Oregon or Vermont or Switzerland without me.
that pretty much ended my idea of leaving my home where we have lots of friends and support. so if I end up making this decision at some point I have to figure out how to do it here and those books I mentioned do have guidance, but right now I am not so freaked out. I am with the others...let the news settle a bit, and cross that bridge a little bit later. This disease progression is so individual that you really can't make predictions about where you will be at X date in the future. Letting go of control is hard.
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Old 09-28-2015, 03:58 PM #18 (permalink)
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Default Re: My Terms

Hi Charlie-
I'm a little late to the game with this post. Many of the above posters have so eloquently written how I have felt while going through diagnosis. I understand the need to take charge of something, anything, while completely under the control of motor neuron disease. I have spent a great deal of time speaking to a psychologist about my fears- being a burden, both financially and emotionally, to those closest to me- my worries about just plain not being able to live with the appointments, the drugs, the fatigue, the incredible effort it takes every day to even function so much less as I once did. I ask myself every day "Is this it? Is this the rest of my life?" and feel a great deal of weariness. I have a teenaged son and, at this point, I feel the trauma of a parent dying suddenly now would be more traumatic than perhaps having me around for however longer I can be there for him.
Please think about seeing someone to discuss your thoughts about the future and your fears about this disease. Not so they can persuade you otherwise, but to help you order your thoughts, provide perspective, and to be someone who has no emotional investment and can be an objective sounding board. This is such an overwhelming thing for you to deal with on your own.
love for you in your very difficult situation~ Fiona
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Old 09-29-2015, 12:01 AM #19 (permalink)
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Default Re: My Terms

1) Let's not equate a graceful exit with active suicide.

2) Let's not, therefore, saddle graceful exits with "chancy" methods. This isn't a movie or a "I'm crying for help; I really don't want to die" situation.

3) Let's instead presume that any P/CALS reading these words knows how to acquire and "dose to comfort" a bottle of morphine, and will have before that completed an advance directive, health care and financial powers of attorney and seen a physician/NP/PA in the months prior to document health status.

As for the comfort of your family, if given some thought in advance, this should not constitute a "sudden" or unforeseen death. Don't just converse on line. Your loved ones want to know your best thoughts before crunch time.

It is legal throughout the States to titrate someone else's (or your own) morphine to comfort in the setting of an incurable terminal disease (yes, even in Texas and the rest of the South), whether you are enrolled in hospice or not. Outside a prisoner's death penalty or the Death with Dignity laws in OR/VT/WA (+possibly CA soon), it is not legal to administer any drug with the primary intent of causing death.

4) No one has to go anywhere or study pamphlets. Stay at home, live as best you can as long as you can, secure in the knowledge that you have provided for the alternative.
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Old 09-29-2015, 02:14 AM #20 (permalink)
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Default Re: My Terms

If anybody ever needed a second opinion on this subject, I totally and absolutely agree with Laurie. Read her post, above, carefully, twice.

I just wanted to add this: If you're not comfortable dosing morphine, I recommend ensuring that your nurses are comfortable with palliative sedation.

--Mike
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Old 09-29-2015, 03:42 AM #21 (permalink)
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My goodness Laurie that reply was written brilliantly.

I'm in Australia where there are very clear laws about active suicide.

However, there are also very clear laws about palliative care. We registered early with palliative care, and when Chris came to the end stages it was so easy to have their guidance on medications and their applications. No one was concerned about 'giving a final dose'. The only concern was his comfort which is just what palliative care is.

I've never even tried to think clearly on whether the meds had anything to do with the timing of his passing or not. If they did, he maybe passed a day or two sooner than he may have otherwise. He was peaceful in those last days and the monster was taking him, but it was a good ending.

It was a graceful exit, at home with me exactly as we both wanted. ALS took so much from us, but it did not take that.
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Old 09-29-2015, 10:21 AM #22 (permalink)
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Hello Time,

Just sending my regards to you and best thoughts. I appreciate your candour and honesty. I was given the diagnosis on Aug. 25th, so still very new sitting, sleeping, waking and walking with this Bulbar Onset. Although I have worked in the mental health field, social, community and human service work front line and in management, ( even have the little semi colon tattoo which is Suicide Prevention and intervention symbol as in life has pauses that feel like " the end" when, in fact this is only a pause- not the end- it ain't over till it's over- type of sentiment, "try to see that this crisis too, shall pass, life goes on") , and am a practicing Christian, I have , like you, thought seriously , off and on for a month, about ending my life very deeply, before this train wreck, creates more horrific outcomes for my husband, my kids, grand kids, and yes myself. Thinking , or " assuming" all these yrs that I am a survivor, a soldier in many of life's battles etc, I could not imagine and contemplate further losses than I already have with this type on onset. I wonder if I can face what I see as incremental humiliations of total dependency on care for all basics needs. For a bit, not immediately, but there are times I am immobilized with shock or even a type of fear. I know you and I may be very different in so many ways, but I do get ya.
There is so much experience on this forum but sometimes I cannot go on the forum because I can't give more energy or time on certain days to this monster( I think of it at times) of ALS, as now so much of my thinking, related appointments, considerations, professional, and financial loss, much communication loss is because of what ALS seems to have captured from me. I do not think I'll be ever able to say that i thank God for allowing me to have ALS , but I try most days to thank God " in" this situation so as to see what many blessings I have had, still do, despite my anger, hurt or total regret this has hit my loved ones and me.

My tiny experience with this and reading others- many more aware and " down the road" with knowledge than I am, is we must find and do find our own way to deal ,fight ( in some cases), live, survive, die or prevail, until an end, with motor neuron disease- our own individual mixture philosophically, spiritually, mentally, physically as our own " M O", and the way I, ( sometimes) stay away from the idea or serious consideration of taking my own life, is adding the one hour or one minute at a time, perhaps one day at a time. Of course the issue of my family and whatever example possibly that ai might be able to leave them in my living or dying, I don't want the younger ones to think because mom did it, or Nanny did it, or because Susan did it, then when i ( they later on) am faced with what might look and feel like devastating news, or terrible life hit, ( perhaps nothing even as serious as ALS but in their young minds, they might see it as horrid) then it may be easier for them to end their life before their time. In their case, good things very well may await them in life, if they hold on.

This is not because I am so strong or caring about others- right now it is about trying to cling on to " something" left of who I am inside, some piece of driftwood from this wreck, so I can pull through for a day at a time.

I do not say this because I think I have any right to advise or judge anyone else's choice or outlook at all. Dear knows when I will fall back into the deep waters again. Just " sharing" for what it is worth. I hope you can get through a bit further like some of the longer term ALS survivors have advised and get your bearings, and more info first, weigh all the pros and cons, for you a bit longer. Life might still have some surprises in store. Symptoms may stall, or be slow in coming on to you.

Also, I think I am into a different phase after this last horrid month and it is the I am going to kick ALS in the butt mode. It has usurped so much of my life, even the last 8 months when no one- my doc, other medical resources knew or took the time then to figure out what really was going on with me.


Trying to alter my mind set as I was finding myself almost rolling over and playing dead to ALS, and I am no longer in the mood for submission to it. No, others might think I am being naive or silly, because this disease seems to overtake the strongest resolve, but again, for me, to survive half decently for awhile or for longer- cause It has been hard hitting thus far to me, it is part of my little package deal as in my way to cope, my new " M O" , if to go on. As much as possible, I am currently not thinking about tomorrow or next yr. - in fight mode right now.

My heart goes out to you as corny as it may sound. I wish you the best for you, " for you"

Susan


Ps- to Glenn, I appreciated your analogy about men( or women) serving life sentences . I often think that now, or my analogy, a cow in a pen being taken to a slaughter house. That was where my mind, and my nightmares were taking me)
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Old 09-29-2015, 12:41 PM #23 (permalink)
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Default Re: My Terms

Time, the doctors will not really be able to give you a time table or schedule of your progression by the way. they will guess (maybe) but they really can not know. only time will tell and that is the truth. all the pals here have different experiences with progression. similar, but definitely different. my own husband was told 3-5 years and probably on the shorter end of that. we are at 8.5 yrs now. he wanted to commit suicide those first few months, as many pals do. he didn't--and it was for us the family that he did not. and that was a good thing because we needed him and he found optimism and happiness again.

He says that he wants to control the end when he is ready, but he is not physically able to do that any longer and his plan involved some work that I am not willing to do. I agree with mike, you want to make a strategy, but there is not a rush. you will not become completely disabled over night and while you are planning you may find happiness and reason to live despite ALS.

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