This Is MS Multiple Sclerosis Community: Knowledge & Support

Forgive my indulgences as i am able bodied, and am looking for answers regarding my sister who has Level 1 M.S. What i am about to ask will seem crude and insensitive. Even as my insights declare, that to live with and endure the love of another who is terminal... elevates the lives of those who share in it. My questions remain.

Is my sister somehow less than a dog, or cat or mouse? That is to say if a dog was loved, yet immobile (can blink only), tube fed, in constant pain without drugs, catherized, bedridden, speechless, with the endless array of internal suffering ailments and sores that go with such immobility, wouldn't the dog be euthanized? Does this make my sister something less than that?

For the Record: She is cared for 24/7 at a care facility that can handle her extreme and there is no financial burden on any... as we are covered here in Canada.

The saddest of stories has her being the youngest of nine, married with 2 children (mostly grown). Her husband was a mother's boy himself and fled from his beloved... as he was not strong enough to cope with almost any of it; as he needed to be cared for himself, as opposed to the other way around... he simply abandoned her. She had chosen to have her two boys even as she was told the M.S might be expedited after the fact. It was! Anyway! As the baby in the family and with the dysfunctional non-relationship with her husband, nobody seemed to think of a DNR status while she slowly slipped into her comatose state.

Having lost any short term memory it is understood that in each moment she sorta is, and we think she blinks yes or no, not sure. Another question! Is it possible for a brother or sister to ask her if she wishes to be taken off her feeding tube, using her blinks to confirm if she wants to end her suffering? Is this a ridiculous thing to suggest? Is it too late for that?.

Can any be believed who say, "If i was like her (Michelle), the way she is, now i would not want to go on like that.", even as everyone who witnesses her says so, including myself.

She had the liberation treatment in hopes to lax her limbs and it has worked somewhat as she convulses less and is less rigid.

I admittedly see her only once or twice a year as i find myself wanting to grab a pillow and end it for her. I know how cruel that must sound, sorry! Yet, I happen to be the one who held her in my arms on the way home from the hospital after her birth... like it was yesterday, i was 10 yrs old. She was special to me then as she is now, yet i can't bare to see her like this. Is this selfish?

Is there a better place to post this?

Thoughts!

ray

Michelle has been at least five years pretty much as she is. The discussion is that the pain meds will eventually shut her organs down. How long can this take? How brutal an experience will that be for her?

hi ray and welcome to the forum. at this time i am not aware of anyone else on the forum who is in the same situation that you and your sister currently face. perhaps a 'lurker' is out there who will chime in or message you privately with their input.

i don't imagine my thoughts are going to be any kind of useful action items per se for this case, but from a nutritional standpoint here's what's floating around in my head - first, your sister being the youngest of nine argues the possibility of abnormal prenatal developement due to low maternal nutrient stores, and in addition, possible low neonatal liver stores of nutrients. then, possible low stores in low childhood may have been further depleted as an adult due to pregnancies, although this effect may have been temporarily averted via nutritional regimens sometimes adopted for expecting moms... together these various issues paint a less than optimal nutritional picture.

while i don't know much about your sister's specific symptoms other than spasticity, i can offer this - of many nutrients known to be lower in ms patients compared to healthy controls (still 'normal', but still lower on average) serum magnesium is an important one that's involved in a wide variety of magnesium-dependent body processes, and is a nutrient that's strongly associated with proper muscle function (including the smooth muscles that make up the vascular system) and reduction of muscular pain. to give an idea of the potential impact i'm talking about, magnesium has been used effectively in cases of tetanus.

the normal range for serum magnesium is 0.70 - 1.10 mmol/L, but you don't want levels to be any lower than 0.90 mmol/L. depending what province you're in, this test may be covered. for example in ontario, serum magnesium testing is covered on OHIP's schedule of laboratory benefits. (RBC magnesium testing is considered 'better' but there's less published research available, providing replication re optimal levels seen in 'healthy controls').

that's one example of a nutrient that might be a feasible way to address some of your sister's chronic issues, depending on the rest of the context of course. if you can medicate symptoms with nutrients and thereby avoid the liver damage associated with pharmaceutical meds, there might be some improvement in nutritional status at the very least, and possibly also in quality of life as a result. of course this is all completely dependent on buy-in from the health care providers and your sister herself, to whatever extent she is able to communicate.

so, that's my input, it may fit or may be way off track, but there it is for your consideration - hopefully it's somewhat useful!

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Oh, Ray, my heart goes out to you! It is obvious that you care very much for your sister and that her condition is a source of great pain for you.

When I first read your post here at ThisIsMS, I wanted to answer immediately, to throw my arms around you, to comfort you in some way. But I felt totally inadequate, I didn't know what to say. I know many others here probably feel the same way. Jimmylegs' courage to respond gave me the courage to try to answer, too. I may not find the proper words, but please understand that we feel for you and your sister.

To hear you describe her situation is the very future that we all fear and face; the end-of-life arrangements need to be made long before this point. I don't know how a sibling could be legally able to remove her feeding tube now. I KNOW you want to help her; I KNOW you put yourself in her place, but I feel her situation is not in your hands. It must be very difficult to visit her, I know you do it for her, not for yourself.

Perhaps for my OWN sanity, I believe the answer to MS will be coming very soon. I do not believe in "permanent damage" and I believe all of us with MS will return to a normal life. I believe where there is breath, there is hope. We MUST hold on! I pray for you to have the strength to do that. Thank you for sharing; sometimes it helps to have someone just to talk to – we don't have the answers, but we listened well. You posted in just the right place for us to see it.

_________________
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"

lyndacarol,

Thank you! By your words my despair has been diminished... somewhat. Thanks again!

Forgive me! As i pointed out, suffering elevates those who persevere in it. I feel that i am failing in this at times. I understand, this one is elevated and will live each day to the fullest, in part because of Michelle, and in part because i feel i am liberated... spiritually speaking. In the same way as i watched the Passion of the Christ, (Mel Gibson)... each submission, each release of the Lord's spirit, was a breath a salvation toward our own. Suffering yields so many rewards. For the M.S. sufferers, i suspect they (most all) will reach a measure or measures of letting go... from what binds... that displaces ego desire... cleansing the heart and stilling the mind. Having lived it on my own spiritual journey, it is how one's spirit is reactivated. Where one is no longer alone.

Perhaps that is where i struggle so. I understand she living each moment kinda like a ground hog day series of events for Michelle. One like myself, is a witness left with the memory, that endures, Michelle perhaps not so. Yet, her moments of empathy... for herself... must be retching... even for a time that is hers. In my strongest moments, i feel i am so much less than she and those of you who are struggling with this.

So thank you for elevating me... Lyndacarol!

So many souls to be freed. Able bodied souls who's lives are up for grabs... unknowing. While those who suffer terminal illnesses and are up for grabs... knowing! I suspect the sufferer's will tip the scales with regard to salvation... over those who live bound to their desire and do not suffer so. I've got to remember this. Even as her time for repentance might be passed. How many more who witness her... might be moved from their knowing (unknowing) ways.

Namaste! Lyndacarol

I don't think anything you said is selfish, apart for the huge fact you are using a forum with members that have the same disease your sister does. That's selfish and cruel. Look for support yes but on the right places. Coming here to ask for support from MS patients is a downer for those who suffer with it and VERY coward in my opinion. Sorry! God bless your sister -and you.

In asking for forgiveness i was hoping not to be considered in this way. As much as I may be asking for support, i have shared a message for any who are able to see it. As i consider myself a liberated soul, i am not an everfree. I find it difficult being a householder (family man, husband, father) to be able to let go of the limiting parameters of the ego regarding certain relations that are family. Having said that, liberation has enabled empathy that far surpasses anything i might or could have imagined before. For instance, my love is no longer for my own as i am drawn to love unconditionally. In such ways, animate, inanimate i see that all things come from the one and will return. The struggle is toward the understanding that even as live's are lived by each of us... even till old age, it is but a whisper in the annuls of time to come.

What remains for me is this. Upon realizing that every soul will in time be saved. There is a good read in the Acts of Peter that was not cannoned, but holds much insight that shares that only by God alone can these things come to pass, but they will. For those who see and believe such things, a time of sitting in the darkness awaits most all of us. That time is perceived after death, as the spirit cannot reunite or connect to the whole, for they are lost in the shadows. In time they will be returned. Yet, the delusions that will bind them for a time in the shadows is a suffering that need not be. Will Michelle need to endure a time such as this after death, i do not know? It just seems she is past the point where suffering now... serves any purpose for her. The fact that another could be elevated or not... is too much of a price to pay any longer.

My question was with regards as to whether we as a society have dropped the ball in her case. Sitting by and letting the suffering continue should not be our only option. I want her story to be out there, in hopes we can change the outcome for others, who might fall between the cracks as she.

Forgive me!

ray

ray,
thank you for sharing your sister's story. i'm sorry for the difficult situation.
i very much disagree with BelBee. where else would you find folks who can understand.
i think it is a conceit to believe that one who watches someone else suffering is not suffering also.
we each find a way to deal with what we must. i wish you strength. your love is beautiful.
elyse

"My question was with regards as to whether we as a society have dropped the ball in her case. Sitting by and letting the suffering continue should not be our only option. I want her story to be out there, in hopes we can change the outcome for others, who might fall between the cracks as she."

Oh yes, as one who has SPMS, I definitely think that we as a society have dropped the ball in many a case.
My heart goes out to you and your sister!

In what ever way my indulgences might be overstated, i am beginning to see a profound depth of faith and fortitude with those who are sharing in this discourse we call MS from this forum. The focus of each soul searching to marginalize the chronic nature of symptoms, while reaching out to one another unconditionally, supports my resolve and faith in you all.

If i may, i find myself often sharing moments of my time not just with the living, but as i work, or watch a sunset, i share the moment with those who have passed. College buddies, friends, and esp. those who lived so and passed before old age. No matter what is happening or what occurs in my coming and goings, i realize if they could share any moment of it... they would feel blessed. Who among us, far from old age, do not feel that an early end to this live, cheats us from sharing any longer in it.

My only grandson, is but 15 mos old. I will only have a short time with him, as life goes, even if alive for a while i will not fully share in his comings and goings as a man, as he cannot fully share in mine, at this point in time. This is not a case of MS, but that i am from another generation than he. Yet, the spirit does live on. I love reading old christian writings, for it is in them, insight is found. In the Apocalypse of Mary, readers find her asking the Arch Angel Michael what the sins of specific sufferers are. One can easily get caught up in the plight of those bound so, but that is not all. She is free in her spirit to reach out to those in need and to pray for such souls. She is free and does not suffer in any of it. A great read is the Infancy Gospel of James and other such context that explained how Mary was raised in the Temple of God and talked and was fed by the spirit of God him/herself. Dedicated to the temple she was pure in heart, mind and spirit. One wonders if she lamented her pending death and passing. Or was she as Yeshua and so many others gleeful to return to the heavens and the Divine Mother/Father?

It is my feeling, and sadness that Michelle had not reached such understanding. I do not and cannot judge her, only in the mystery of things, a burden is carried for those enlightened, for they can see in part those who are liberated. I asked her about such things, but i respect and feel she was in denial of so much at the time.

All thoughts on such things are truly worthy of discussion.

I normally don't get involved with this kind of thread but your insensitive comment to the person looking for answers about his sister makes this an exception for me.

You could have made your point in other ways but to call him a coward was uncalled for. The guy was hurting, frustrated and suffering from any number of feelings and the last thing he needed was to be called a coward. You should be ashamed of yourself.

Harry

jimmylegs,

You did not imagine Michelle's life you labeled it with the quote above. Her nutrition was non existent. I am hard pressed to image a green vegetable she would consider. Mother drank excessively. I do not know much during pregnancy, yet it is suffice to say, "Mother did not care for herself very well". I singled as much out with the onset of Michelle's M.S. at 21yrs or so, but she was able to smile around it, and basically ignore those who prompted her.

Let me add as much as she was my sister, she had six sisters, (one passed with coronary disease...she was the oldest.) How bizarre that the first of nine born in the late 40's, would succumb to illness in her 40's, while the youngest of nine born in the early 60's would suffer an illness as well, and likely pass in her 40's. True! There was the first four... youngest was a boy, then nine years past, then myself and four more girls. Michelle the youngest. Same parents, two generations. The oldest sister in the second generation, closest to me has been her power of attorney and confidant. Other sisters less so, but support for her was more being addressed by they, than i. I tried to reach her spiritually, and i guess i still do.

I've discussed that i believe, that i am a liberated soul. In laymen terms there are seekers, those who are liberated, seekers after liberation, and everfree. O fifth element are those who do not, or have not ever thought to seek. As a householder or family man, i remain liberated, and often in my own times a seeker after liberation. Michelle was a simple women, who sought only to love and be loved in return. She could not have fathomed that her diet and lack of nutrition might cause her to fail as she has. In so many ways, she just lived her life without undue expectations and it was here that she smiled at me when i offered her spiritual insight. I knew that if circumstances prevailed that alluded her from thinking outside her limited horizons, she might remain disinterested in seeking such esoteric things as truth and salvation.

As this is getting somewhat winded, a hope their may be some value of sharing the above. I also wonder if, or how many, have resulted in soul searching of their own largely because of M.S. Or, those whom may have deliberately rebuked spiritually... partially because of their illness and symptoms.

If asked i would share as much regarding such things.

Much love,

ray

certainly sounds like a proper recipe for trouble unfortunate.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

In my view, it is not that your sister is not as good as a dog or cat... it is the exact opposite. She is much more precious. We may be content to say goodbye to our pets who we also love dearly. But it is something different entirely to lose a sibling, child, parent, etc. It's no secret that the magic cure to MS isn't lurking right around the corner, but we also keep hope in our hearts for our loved ones.

Luongo,

Thank you! Such manner of things are carried in one's heart. Only this one's heart has let go regarding Michelle, and is currently given over and imbibed by something else, and i feel something much more. In my last post i was obliged by this very something extra, to offer measures of this extraordinary expression... as it carries within it not just the heart alone, but heart, mind and spirit united, as it's core and foundation.

As witnessed in a few of your other posts, is it not your heart that is churning that expresses the pathetic nature of this site? As all who share in it will be subject to weigh upon the same conclusions, in time; these expressions are true measures of heart's giving up. Sort of as one's heart can no longer bare the pains of its conclusions, the expressions overridden by what one can carry is given over to despair, anger,indifference, or a suffering tolerance/intolerance. I feel, the heart cannot hold such grief alone for too long... the result resting in this pathetic nature that is the expression you prescribed.

i would like to share an irony that is specific to the heart in what was outlined above...

In the next post, i will share this irony

ray