Not sure what I can do to help her

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Not sure what I can do to help her

Postby CureIous » Fri Apr 22, 2011 9:22 pm

but will do what I can.

This is another one of our fellow forgotten MS'ers, my best friend's friend, she is bedridden with MS, can only move her right arm etc. etc.

Look, I know we can't just go out and start slaying MS dragons whenever they pop up on the horizon's of life, but my friend Ruth, who is the truest of friends, is someone you move heaven and earth for and thank her for the opportunity. Any friend of hers, is a friend of ours. So the motivation to help in whatever way possible is there, just that the "whatever way possible" is so limited.

The woman in question is in early 60's. She lives with her 80 something parents, in a downstairs room (sure that does wonders for vitamin D), her father has basically taken care of her through the years after he retired, they all live together in gold country East of Sacramento. She is not ambulatory as stated previously, can only move her right arm. I was asking about her when talking to Ruthie tonight, as Ruth is well acquainted with my situation, as my first flareup occurred while working on a remodel at her house back in 2004. She's seen the dramatic before and after herself, but I know, and I know you all know, trying to apply RRMS results to someone who's bedridden is a bit lofty and misguided.

But, this dear soul is alone besides her parents, she really has given up on life and just wants to die (think some of us get that part), so when I mentioned her to Ruthie tonight, not really familiar with the particulars of her friends MS course, I was shocked to learn just how far along she was. Had no idea. When she mentioned "friend with MS", I pictured someone able to do her own digging and advocating etc. etc. and had no clue as to the severity of the situation. My bad.

So Ruthie sent her an email tonight, but one that would be easily answered with yes/no type answers, and left it at that.

Look, it's like this, (from my POV), when people are so far down in a hole, they cannot see the light of day, and have long ago lost all hope, the forgotten ones, the written off ones, as she said to my friend, "I'm too far gone, there's no hope", well, I'm sorry, but I don't believe ANYONE is too far gone, be it MS or anything else in life.

Some though, need others to stand in the gap and fight for them when they cannot do it themselves, when it takes every ounce of fight just to make it through the day.

Anyways, I haven't the foggiest of what to do, can't just dump a pile of links and papers on her and wish her well. I don't know if she can even adequately digest all of that, but being not really familiar with similiar cases, are there ways that non-ambulatory people are being treated right now? Can they be US'd instead of MRV? Obviously the venogram would be optimal for azy issues, but have non-ambulatory paitients been just US'd and got the go ahead for a veno? I can't remember if someone mentioned about Medicare, do they cover this? Is there any way to get this lady some help if she's amenable?


Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Donnchadh » Fri Apr 22, 2011 9:28 pm

Yes Medicare does cover the CCSVI procedure; I have had three done over the course of a year and they paid for them.

Sounds like her only hope is immediate treatment.

Best wishes,

Donnchadh
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:))

Postby leetz » Sat Apr 23, 2011 1:33 am

Check youtube.com under CCSVI and Dr. Siskin...I believe he talk's about a woman that they med-vac (flew in) to Albany Med (I think) and she was bed bound hanging by a thread, so to speak and they did the CCSVI procedure (because they had no other choice) I think he talk's about how good she did after that (briefly) long video maybe 45 minute's or longer)? some sort of symposium (sp.)? I know he is standing and start the talk off by some girl got him interested in CCSVI by a phone call initially and then she met with him at his office yada yada...it's on one of those..pray it up to the good one above...keep her encouraged, and don't forget about her...we all have dark moment's...my kid is almost 16 and take's care of me daily...sometime's it hurt's me so bad that she is taking care of me...think your a great friend for her to have...advocate for her! possibly save her life...no matter what doing something is so much better than doing nothing at all.. hope this help's a lil sumthing!

By the way you can find him at: www.communitycare.com



May God Bless you and your's...
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby Cece » Sat Apr 23, 2011 7:47 am

Some doctors do not treat above a certain EDSS level but other doctors do.

Keep us posted, I hope she is amenable, and you will be able to help her.
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Postby cheerleader » Sat Apr 23, 2011 8:49 am

Mark--
As you probably know, no one is treating new patients in northern California. Maybe make a call to Pacific Interventionalists and see if they might see her down here and if they take medicare...I know Drs. Hewitt and Arata are very convinced of their abilities to help people...perhaps as one of the pioneers, you might be able to make a case to them to help this woman. I know Dr. Hewitt travels to treat, maybe he might have suggestions for northern California facilities. It would be a good phone call you can make.
http://www.synergyhealthconcepts.com/

If this woman can even be treated, she would need physical therapy and follow up, and she would need to believe she was worth the effort...there's a lot involved that you can't fix.

Even if your role is simply encouraging this woman and your friend, making some phone calls for her, encouraging her to get outside in the sun, telling her she matters...that's a start. Now that you have a bit more energy, you can pay it forward. It's impossible to know where it will lead, but the journey begins with a few steps outside your comfort zone, and I think you did that by posting today. Springtime/Easter blessings to you and your family.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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your friend.

Postby 1eye » Sat Apr 23, 2011 9:27 am

I'm not sure either. I feel so small when stuff like this is in question. I have my suspicions that Dr. Kirsty Duncan was the anonymous benefactor that air-ambulanced Mrs Farrel to see Dr. Siskin. She seems to have some money of her own to spend on worthy causes. I just wish somebody like Bill Gates would make a fund. I cain't do it. I ain't smart enough.
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Postby 1eye » Sat Apr 23, 2011 9:40 am

no one is treating new patients in northern California
why's that? is that a territorial thing too, like Ottawa, Canada, where I have been advised to by my GP to look for a neurologist in another city, because you-know-who has it all sewed up in town? I despair of ever seeing the inside of an MRI again without paying for it personally.

Gets smelly after all the good territory is marked up.
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CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Re: Not sure what I can do to help her

Postby CureIous » Sat Dec 10, 2011 1:08 am

Just to follow up, my friend is venturing up to N. Cal tomorrow to have one final visit with her friend from childhood, as she is not expected to last the weekend due to complications from MS. She was not receptive to CCSVI, or any investigation thereof, but, being bedridden in her elderly parent's basement for 9 years, as her body began shutting down, I don't even venture to imagine what she has gone through, and she (according to my friend) is at peace with no heroic measures, and is done with the whole thing.

And that is about the sum of what we can do, in these close to home or two degrees apart situations, or a stranger on the street, in the bookstore, at the market, wherever, point in a direction, and the rest is beyond our control. These are the ones we are seeking answers for, the "9 years hence" people. They are out there by the tens of thousands, and they aren't just a number in a study or two. They're right next to you...
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: Not sure what I can do to help her

Postby Cece » Sat Dec 10, 2011 8:40 am

I am sorry to hear this, Cure. May she find peace.
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Re: Not sure what I can do to help her

Postby Donnchadh » Sat Dec 10, 2011 9:22 am

A couple of thoughts about a very sad and tragic situation: this condition almost invariably leads to reduced mental abilities and emotional depression. It's very hard to make an informed decision about possible treatment options when you can barely stay awake or think. It is very sad to hear of these cases. I talk to someone who definitely has CCSVI and who just lost his brother to "MS." Very sad that help was too late in coming to help him.

I know that in my case, before I heard of Dr. Zamboni's research, I was starting to decline at a rapid pace. My CCSVI procedures, while incomplete treatments, have not only stopped my progression but have completely reversed some of my symptoms. My memories of the two years prior to my first treatment are essentially one long "fog" because I used to be so tired I would be sleeping day and night.

Hoping for a cure to be made available to the millions with this affliction. The auto-immune theory clearly isn't the answer, and I can't understand why CCSVI has been so voraciously attacked.

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Re: Not sure what I can do to help her

Postby CureIous » Fri Dec 23, 2011 12:23 am

Well, my friend got back from visiting her childhood friend in Northern California, she had since been moved into a facility but not the intensive care kind, ironic that her mother was at that time in the hospital due to stroke. Ruthie had a great visit with her friend though, I was amazed at the level of mental capacity Robin still retained, as relayed through Ruthie. She got back in town just in time to see the Manhattan Beach fireworks show at the pier with us so I got the full update. They had a great visit, reliving Girl Scout days and all that. Robin was very very ready to go, I won't belabor with the difficulties she had in her waning days, too painful to repeat, suffice it to say she welcomed and embraced the end and had no reservations, an extremely intelligent, charismatic and loving spirit trapped in a bodily prison. She lasted another five days and passed on last Friday. CCSVI was just not in the cards for her, her resignation to her fate had long before been settled upon and I'm not so sure her 99.9% paralytic condition would have alleviated with treatment anyways. Irrelevant at this point.

The irony is, the sister of my friend, has a friend, I think 40 something, who was dx'd MS about 2 years ago, and it's taken ahold of her quite rapidly. I recall talking extensively with her on the phone some time back and relaying my experience and a quick overview and what CCSVI was, and believe it or not, what it wasn't. I try to sprinkle one "however" for every positive thing to balance it out, it is hard to encapsulate CCSVI in a phone call. And of course one of Marie's books.

Oh, digressing back to the irony thing, and remember I'm kinda relaying this stuff third hand, but I get the sense she is in (somewhat?) of a denial as to the rapidity of her progression, what I mean is others see changes and recognize them before you do, the decay of mental/cognitive functions, memory loss, physical limitations, just like I don't notice my kids growing, but others sure do after not seeing them for a few months, and (here's where I try to step lightly), if I were her, and knew about this, and had this happening to me, and if it made some sense, I would want to at least be scanned, see what's going on, but that's me, and I'm Cureious. She is in a very wealthy family, some national restaraunt chain owners or something, and has unlimited resources, hence the irony, as so many would, and many have, dropped their life savings in pursuit of an answer here, should insurance not be an option.

But that's me with my opinion, and that's all it is, but it's not my place to tell anyone what I think they should do or should not do, and being a friend, in my book, means giving the other person the option of saying NO, and the other person accepts it on face value and leaves it alone. My buddy Don said long ago, "People give you advice because they want you to follow it".
So true, generally speaking.

It's not easy sometimes, and I don't mean that to say we have all the answers, or CCSVI treatment is a sure thing, or is applicable to all MS patients, but in the end, the very best we can do, is simply put the information on the table and point in directions to resources, and hope for the best, but at the same time, I think most of us understand, when you are in the grips of the disease mentally, it sometimes colors your thinking, depression and all that. Then there's the other thought I have, and this is a general commentary not directed towards this lady specifically, but one very very important question that we must ask ourselves, and answer ourselves, to ourselves alone, and that is, "do you want to be healed?". Might sound silly I know, as *obviously* there is nobody but charlatans offering that here, but at the same time, when one has been locked into a certain mindset of dysfunction=norm for so long, it just becomes second nature to be "an MS'er", with MS, and all it's concomitant dysfunction and drag on our flight through life..

At some point, we come to grips, hit that "acceptance" part of the grief stage, and move on with life, adapting, adjusting, and become accustomed to, and (as much as possible), comfortable in our own skin. As faculties decrease, we adapt/adjust as we are able and willing to do, I'm amazed sometimes at how some are able to continue thriving despite their limitations.

Then along comes this CCSVI stuff, and it's possibilities for regaining lost ground, or improvements, and I say possible, not probable, and now I must only speak to my own experience, but that adapting/adjusting goes the other way too! I am fully aware this is not everyone's experience, and for some CCSVI has been a nightmare of epic proportions, and for some just blah, nothing, but for those of us who've regained something lost, there comes this other part that says, "okay so what do I do now?".

I was so used to being sick, I didn't know how to act normal, heck who knows what normal is anyways, all I know is, a significant chunk of life was wrested away, and it's 2004 all over again, but this time going the opposite direction. This MS thing, so engrained in my identity, and now it's just a notation on the paper in the chart in my neuro's office. Now what? I dunno. I forgot how to just live and not always be considering that "okay this is remission, hurry up and do stuff before anything happens", if I can remember where I was in the first place. This is healing, but it is also a time of upheaval, out with the old, in with the new. It's daunting. There are responsibilities, same as before, just that now there are, gasp, "expectations", the new Mark without limitations, excuses, real or imagined. Is anyone ready for that? Do you WANT that? Or is resignation and acceptance so comfortable now, that you cannot imagine living without it? It is a major shift to go from just surviving and making it, to making future plans stretching out into years, and that is assuming a LOT, that MS is not going to factor in at some point. Maybe that's the scary part, assuming this is going to be the new norm, with nothing to reference or gauge whether that IS the reality.

Just waxing philosophic here, maybe some food for thought, things to take into consideration, as there are going to be many that say, "this is just not for me, I'm comfortable where I am, no thanks", and that is perfectly O*K*A*Y. It reminds me of the controversy around cochlear implants, some deaf people are just okay being deaf and using sign language and don't WANT implants, even if it meant the restoration of some hearing...

There is going to be a certain segment of the MS population that is not going to go for this, even if it holds a certain store of hope and promise, and yes, I realize there are a certain amount of presumptions built into this as to CCSVI>MS etiology and all that. Guess I'm just curious why someone wouldn't want to be tested is all, even if it goes no further than that... Puzzled is the word that came to mind....
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: Not sure what I can do to help her

Postby dlynn » Fri Dec 23, 2011 6:38 am

I'm so sorry about your friends' friend, Robin.
I was so curious back in April of 2010 that I had a venogram. My Dr. found blockages in both IJVs and AZY.
It took another 9 mos. to find another Dr. who was "allowed" to do the procedure. But I was too curious to do nothing.
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