Why I won't take Riluzole
M. Kintyre
represents and is encouraging me to take it. Extending life expectancy by
an average of three months didn't seem worth the expense or living with any
side effects. He pointed out that since my ALS has been exceptionally slow
in its progression, the three months might be more like a year in my case.
I agreed with that, but pointed out that I wanted those months early in the
course of the disease, not now! Adding time to this end of the disease
progression just doesn't make sense to me. I am not totally paralyzed yet
nor am I particularly depressed and I am far from suicidal, but I really
don't want to extend the time I spend totally helpless from a year or so to
a couple of years. Well, he didn't seem to think my reasoning too sensible
and I left his office letting him think I would consider it.
Riluzole is great for the newbies, but some of us a good way down the line
don't relish the thought of being trapped in a worthless body and being a
burden on our families for any longer than necessary. I am not on the
phone to Dr. Kervorkian, but definitely plan on letting nature take its
course. Is there anyone else out there who feels as I do?
LiveLetDie (A name originally chosen as the one place my daughters and my
musical tastes overlapped, but it sure fits my feelings here!)
Andrew Fleeson
livel...@usa.pipeline.com writes
lasting version of ALS/MND and whilst I'm still enjoying life as best I
can I would get really bored with an extended entrapment phase. Much as
I admire Stephen Hawkings and have had the privilage of meeting him I
know I couldn't be as content with a situation like his as he obviously
is.
I have been very aware of and involved in the Riluzole development and
know that it is probably only suitable for maybe half of all patients.
The snag is there is no way yet of identifying which half and, for me,
50/50 odds in my present circumstances doesn't grab me as an offer I
can't refuse.
So, a truly landmark development for those of us living with ALS/MND but
thanks, not for me.
--
Andrew Fleeson
TABco
ALS runs in my family. My grandmother and her brother both died with this
deiease in the 70's. My uncle currently is taking Riluzole. This is his
choice. Since ALS runs in my family, we have discussed our wishes with each
other. Most of us agree that we would not want to extend the suffering we
have seen others in our family deal with. If we could delay the onset of this
disease, that would be one thing, but delaying the suffering is not for me.
I will also not be placed on ventilators, and the other related stuff.
Sorry, but if I can no longer function, it's my time to go.
Thomas
Bryan Pinn
livel...@usa.pipeline.com(M. "M. Kintyre" writes:
> My neurologist is enthusiastic about the "breakthough" that Riluzole
> represents and is encouraging me to take it. Extending life expectancy by
> an average of three months didn't seem worth the expense or living with any
> side effects.
....cut....
> Riluzole is great for the newbies, but some of us a good way down the line
> don't relish the thought of being trapped in a worthless body and being a
> burden on our families for any longer than necessary.
.....cut....
The sentiments expressed in your posting are felt by many of us with
ALS, but there is still that basic human instinct to survive, that is
in all of us. Each one of us who is only mid-way through the disease
often think of what we will do when the time comes......will we let
nature take its course, or will we allow medical technology to keep
us going a little longer? What a decision for any human to have to
make! The drug decisions, like the taking of Riluzole, are easier
because the benefits are hard to quantify.....who knows if the
Riluzole will keep me personally, alive for an extra three months or
not?....and it is out there in the future somewhere....very hard to
quantify. But the decision to have a ventilator or a tracheotomy, might
have to be made under a great deal more pressure.
It is essential that we ALS patients do express our feelings and our
fears. There are many many considerations when we decide to prolong the
life of a severely disabled person.....not least how this patient will
be cared for.....but also, what will we do with this extra time?
On this newsgroup I have seen patients on ventilators, leading very
fulfilling lives, and certainly not wanting to die. Their family and
friends and their other carers seem to cope with all the problems
remarkably well. Yet we all know that there are others not doing so well.
There is no definite answer to this question. I think now, that when my
time comes....I will give in gracefully. Perhaps that is easy to say
now, and when my time does come....perhaps I will want to survive!
BP
--
<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<< <<<<<<
*** Bryan Pinn ** br...@bpinn.demon.co.uk ** Dorset, England ***
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
Mike Beal
>
> My neurologist is enthusiastic about the "breakthough" that Riluzole
> represents and is encouraging me to take it. Extending life expectancy by
> an average of three months didn't seem worth the expense or living with any
> and I left his office letting him think I would consider it.
I wrote a private response to this wonderful posting, but having seen the
three excellent response postings, I'm moved to "go public".
I too am with the patient all the way. I've made a similar decision, having
participated in phase 2 of the BDNF study. The trial was double-blinded, with
a one in five chance of placebo. At the end of it, I declined the chance to
go on drug, for the very same reasons. My medical people were sympathetic and
supportive. I find it interesting that this neurologist was apparently not
so.
Why do people have a hard time understanding this? Fear, I think. It's not
that we who endure this are heros, or particularly courageous. I've come to
believe that most of us live our lives without serious trial, and that many
of those to whom we attribute "courage" are just unlucky souls whom fate
deals a bad hand. Most of us thus tried handle it pretty well, fighting to
retain our dignity. I often think that my ability to retain my sanity through
this is not much more than fear of failing this trial, of losing my dignity
of spirit--dignity of person being now a memory.
Perhaps this doctor (one must assume he's seen a great many ALS sufferers)
just can't relate; just can't imagine how he would handle it. The easiest
course is to fall back on the training: keep death at bay.
So then we're back to that terrible question: is life without dignity
preferable to death? Hey, it's a hard one! I know how I feel, but I sure do
wish I'd never had to consider it.
--Mike Beal
BOB LOKERSON
As they say in another forum, "Dittos". I am suprised at the unanimity.
-
Bob
Andrew Fleeson
In article <317D41...@hookup.net>, Mike Beal <mb...@hookup.net>
writes
>M. Kintyre wrote:
>>
>> My neurologist is enthusiastic about the "breakthough" that Riluzole
>> represents and is encouraging me to take it. Extending life expectancy by
>> an average of three months didn't seem worth the expense or living with any
>> side effects.... Well, he didn't seem to think my reasoning too sensible
>> and I left his office letting him think I would consider it.
>
>
>I wrote a private response to this wonderful posting, but having seen the
>three excellent response postings, I'm moved to "go public".
>
>Why do people have a hard time understanding this? Fear, I think. It's
not
>that we who endure this are heros, or particularly courageous. I've
come to
>believe that most of us live our lives without serious trial, and that
many
>of those to whom we attribute "courage" are just unlucky souls whom
fate
>deals a bad hand. Most of us thus tried handle it pretty well, fighting
to
>retain our dignity. I often think that my ability to retain my sanity
through
>this is not much more than fear of failing this trial, of losing my
dignity
>of spirit--dignity of person being now a memory.
>
>Perhaps this doctor (one must assume he's seen a great many ALS sufferers)
>just can't relate; just can't imagine how he would handle it. The easiest
>course is to fall back on the training: keep death at bay.
>
>So then we're back to that terrible question: is life without dignity
>preferable to death? Hey, it's a hard one! I know how I feel, but I sure do
>wish I'd never had to consider it.
I agree with all the views expressed so far on this subject and, for me,
this issue is one that so far the 'professionals' have carefully
avoided. The development of possible treatments is exciting and
important for us members of the club. I can't help feeling it's more so
to the professionals, if only to muffle some of their feelings of guilt
over their inability til now to offer a 'treatment'. What many have
failed to properly recognise is that their role in offering advice and
guidance to help us maintain our dignity and quality of life is all
we've ever asked of them and when that has been forthcoming our
gratitude is boundless. Maybe I'm too pragmatic but I don't believe in
miracles so when an apparently wonderful breakthrough is announced I
tend to ask 'what's the catch?' The catch with Riluzole and the other
drugs pending is 'do I want extend my life at all costs'. For me, and I
know I won't change as my death draws near, the awnser is no. However,
each patient must make that choice for themselves. The views of the
professionals must be limited to purely practical advice but I guess
their training and vocational motivation makes that difficult.
To me, this newsgroup is a very excellent mechanism to help us all
firstly to express our views on this issue of 'whose life is it anyway'
and secondly to demonstrate consensi on the various positions differing
groups of us will undoubtedly take. It will also provide the evidence
individual patients can use in support of their wishes when
dealing/negotiating with their health-care professionals.
I suspect this particular subject could run and run.
Anyway, to paraphrase the advice of a great salesman I once knew, keep
on keeping on.
AF
--
Andrew Fleeson