Changing Course

Rememberance Day  Please let us remember that the original intention of this day is "Never Forget, Never Again" Enough said about that.

I haven't felt much like blogging lately. Fed up with all the fighting over CCSVI and angioplasty; I avoided even looking at my blog.

I will continue to post about CCSVI and angioplasty, and will continue to support "angioplasty for all" Will continue to cronicle my cannabis use, but otherwise, I will go back to the original purpose for my blog: A written record of my MS experiences.

Good bye to all the so called experts. I found myself falling into that trap. The guy who wrote the blog
"Multiple Sclerosis Sucks "  is so right about the pitfalls of blogging. He really has the different types of MS bloggers pegged right. What a bunch of self righteous, imagined experts we are, standing on our little soap boxes.  Notice I said we.

How easy it is to sit here and write without ever worrying about being challenged in person. Don't like a comment? well just delete it or  trash it.  Feel like putting another blogger down? Go right ahead because unlike real life, there are no consequences. Hey! people stop reading your blog ? Who cares, there will always be the safe, comfortable circle, or  like minded folks who will cling to you.  They will continue to give you awards and you them. A mutual admiration society.

Doesn't matter if what you preach is unfounded, unproven, or flat out lies. So long as you don't go after the big guys, things will be fine.  You don't have to worry if your so called medical expertise is a bunch of quakery either, because there are so many desperate souls out there who are looking for even the slighest crumb of possiblity. They will try anything and everything in the hope that it will work. 

Solidarity ? Forget it. Everybody is too caught up in wanting to be right  Damn the truth whatever that is.

Goodbye to all that
My astro forecast got it right

Libra- Thursday, November 11, 2010

Your insightful nature reveals issues that often are best kept under wraps. This ability carries a high level of responsibility and requires great deal of discretion. Letting out what you know about someone now is necessary, but it needs to be done at the right time and in a delicate manner.

To Diane With Love

 Dear Diane at A Stellar Life. Here is my rebuttal (in red) to your post regarding CCSVI and the "liberation surgery"


 MS: Enter The Decision Zone

"Decisions, decisions, decisions, MS causes me to suffer from DO (Decision Overflow). Now I need to decide what I believe about the much talked about MS "miracle cure" CCSVI (Chronic Cerebrospinal Venous Insufficiency) surgery. A little balloon in a vein and I'm on my way to recovery! I've always liked balloons"

This flippant comment does nothing to help anybody but Hey, It's your blog!!  I have never heard of "liberation surgery" being called the miracle cure. Anyone who claims such, is irresponsible.


"In 1990, I had to make a decision about going into the Copaxone trial. That would be the first of many therapy decisions I have had to make. I hate this process because I never feel I have enough data to make a good decision. Nothing offered ever makes complete sense. Nothing but keeping up with general good health habits like diet and exercise and basic body testing."

There is tons of information out there about CCSVI which I would be more than happy to direct you to.

At least you had the opportunity to decide; for better or worse.   We, who want the surgery are being denied this.

"CCSVI is not passing my test. I have to use all the information I can collect about it, then think about my and other's (I know IN PERSON) MS experiences. Blogs are helpful, Wheelchair Kamakaze has a fantastic post about CCSVI here. My local TV station ran a story about some people from Seattle who are demanding it and the thoughts of my (so far) favorite neurologist.
So it's not passing your test.  How did you test it? Why throw a wet blanket on it? Nobody is saying you have to have the surgery
 
Here are some unanswered/mysterious questions that need an answer to pass MY test:
Why is myelin never mentioned? I thought MS was like electrical wires with the insulation being torn off, thereby causing shorts. I'm not hearing how CCSVI will repair myelin, even though my own body once repaired it. No talk of MS being a CNS (Central Nervous System, which includes brain, spinal cord, and every nerve.) attacker, just a lot of talk about plaques in the brain.
I had a HUGE plaque in my brain in 1990, but by 1993 it was completely gone. Where did it go? Docs have no clue. So who can say a drug or CCSVI repair can make fewer plaques? Fewer than what? Fewer than how many?
 

Myelin is not mentioned in regards to  the surgery That is correct. The surgery doesn't repair Myelin, but doctors think it may reduce Myelin damage. It might not, but so far nobody else can claim that the common MS treatments repair or prevent Myelin damage. Myelin repair is an important avenue to explore and maybe the eventual cure. But isn't it just possible that just Like MS is different for everyone, so might the treatments be?

The people who had gathered to speak in favor of CCSVI (on the Seattle TV show) were all sitting on bleachers just fine, no wheelchair in sight. What was their MS stage? Newly diagnosed? Relapsing/remitting? If so, I am back to same problem I have with the DMD (disease modifying drugs)--MS naturally relapses (goes away) in the majority of new cases, sometimes never to return.


No wheel chairs at the Seattle TV show? Lots of them at the rallies I go to AND lots of those folks have had the surgery and say they feel better. I know because I have talked to them  No it hasn't helped them to walk but they  seem happy with the results and that is good enough for me. Some claim they are able to get out of thier chairs and move around with a walker or cane for a spell.

CCSVI does not help everyone with MS. Why not?

No it doesn't. They don't know why, just like nobody in all the years of research and billions spent, can explain why some treatments work for some but not for others. Heck they still are no closer to knowing what causes MS, but maybe, just maybe,CCSVI research will lead to an answer. 

"The Youtube videos show people walking quite loopy. How were they before and why wouldn't they all have taken a "pre" video? I NEVER walked loopy. I was slow and sometimes the leg would not lift or foot drop, but the walking I have seen is...interesting. I base this not just on how I walked with progressive difficulty, but also have watched friends with MS as they would attempt to walk with cane, walker, commando. Sure, I know everyone is different, but wouldn't I have seen ONE friend walk in such a manner? I have seen people with OTHER diseases walk like the YouTube videos, but it seems to show either a strange walk or a perfect walk. The perfect walk after DX, I have done. I even ran one day! (Last time I ever ran too.) All this years after DX, while 6 years after DX I could not MOVE from chair to table just 3 steps away. IV Solu-Medrol and I was back A-OK and that full body numb never returned. (The full body MS-numb kept me from walking.)

In other words, YouTube is not verifiable.

You doubt the veracity of the Youtube videos? Once again I say if people think it has helped them that is good enough. So you have never seen anybody walk that way?  Not until you have seen the way  every single person with MS walks, will you be able to say that nobody walks that way. What possible reason would these people have to lie?  Nobody is making big money off of liberation surgery. In  fact some doctors were doing it no charge, that's how much they beleive in it. That is until they were threaten with losing their hospital priviliges I don't see Dr. Zamboni getting rich.
  I don't rely on Youtube for facts. I have seen several news shows with folks who claim it has improved their walking and I beleive them.

People are rushing to decisions. gives me time to see their outcome. Researchers need to use proven methods to test this new "miracle." People live with CCSVI and have no symptoms of anything, according to vascular doctors it is not terribly uncommon, our veins are very small--it happens and the blood just uses another vein.

Yes people are rushing. What have they got to lose from having a well tested, inexpensive, safe surgery? A surgery that is used  to treat  all sorts of illnesses and has the potential to treat many more? Ask Dr. Zidanov in Buffalo. He will be happy to tell you about his promising research to use the surgery for many things besides MS.  Angioplasty is nothing new. Heart patients get stents all the time.Over and over if they want; regardless if their heart disease is caused by an unhealthy lifestyle. You can be fat, smoke, drink, and not exercise,and can get as many stents as you desire, but I can't?
People are spending thousands of dollars monthly for drugs that don't work They aren't allowed to spend a few thousand to have a surgery they think might help them? Does that make sense. 

Off point, but why are people with MS so fear driven upon diagnosis, while the rest of society doesn't seem to care so much? If MS is so horrible (and it IS) then why can't the places we donate money to make this a priority---awareness of the horror? Instead society has been treated to stories and photos of those with MS who scale mountains and star on TV shows and do just wonderful things! People who live with normal course MS need to be shown, in our eventual wheel chairs with pee bags at our side.

I have no answer except to say that is exactly why people are fearful. Because nobody gives a damn!! 

When I was diagnosed all anybody wanted me to do was go to a shrink and take about 5 different kinds of drugs. Now they tell me to slow down and be cautious about this surgery Why? It's OK to poison myself with unproven drug therapies( prove to me they work, they don't) but I should sit back and wait five, ten years, until they have more proof the surgery works?

Fearful. Yeah I'm fearful because ever since I came out with my MS I have been treated like crap by people who should know better, but don't.

Why do some people with MS not have CCSVI? Who can say CCSVI is not just another symptom some MSers get? Why do some people with CCSVI NOT have MS? Too many unanswered questions for me to make a decision right now. Am I running out of time? Well, in 1990 at my DX, I was told people with MS by and far have a normal life span, minus a few years. I am secondary progressive and haven't had a relapse in 6 years. The progression is slowing pretty good and I am even improving in the last year. So...

So... we all know that MS is different for everybody, but once again this is not a valid arguement to postpone having surgery" IF A PERSON WANTS TO!!" The research suggests the majority with MS do have CCSVI. Some tests did not follow Dr. Zamboni's protocols and that could be why some are showing as not having CCSVI. 
Who  can say CCSVI isn't just another symptom? You're right however, that's still not a reason to say I should wait for the surgery.

Of course, if you follow my blog, then you know I am not surprised neurologists don't want to refer patients for testing. Nor, am I surprised that this whole idea makes BIG PHARMA sweat injection needles! Both stand to lose a pile of money.
Yeah agree with you there. Which gives me more reasons to support the surgery.

"Another decision. Just another day with MS."

No it's not just another day with MS. So much for solidarity. If you don't want the surgery Diane that is fine .

Your post only causes more doubt, more cynicism, and does nothing to help. You don't want "liberation surgery" move over and get out of the way of those of us who do.

I am supporitng a class action suit against my government that denies me my rights under the health act
I am not a child, I am  an intelligent woman and I think angioplasty might help me. 

I am so disappointed in American bloggers who either ignore CCSVI or brush it off. I have already deleted several MS "expert" blogs  that push the drug mantra or tell me to do yoga.  Why can't you respect those of us who believe in angioplasty  and help us get the right to have it done?   If you don't want to help kindly shut up and let us get on with it.

 

FATIGUE

 FATIGUE !! Yes in big fat capital letters.  I'm not yelling; I can't, because I'm too tired. Yet tired isn't the right word. Wasted seems more appropriate, and lassitude : "Languor","disinclination to exert or interest oneself".
I'm disinclined because I don't like starting things and not finshing them. Too many half completed projects, stuff piling up, jobs postponed, makes me edgy, makes me feel like a failure.

But what can I do?  If  I sit quietly  and watch a movie, I am so aware of how weak I feel. I get up, start doing something, and  become  even more aware of how weak I really am. I do my job and after a couple of hours; lose my concentration, feel like the life is sucked out of me. I know if I put in a full day, that my evening will be a complete waste and I'll be back on the couch watching a movie. And around and around I go.

There are no words to describe what a crappy feeling it is.

I avoid those who tell me to perk up, take more vitamins tell me I'm feeling sorry for myself, or that I'm lazy etc. etc.  You know; maybe I would be friendlier if you would just  quit bugging me. What ever happened to being there for someone, just being there. 

Now I feel disinclined to go on with this post because it serves no purpose.  That doesn't mean I'm giving up
No, I'll keep going. I just need to take lots of breaks and I hate that.

Canada Is OK

This morning I was getting my usual international news fix from BBC World.  There was much discussion of the austerity measures in Europe. I thought I was hearing things when a critic of the British plan complimented Canada (and Sweden) for sound fiscal management. Yeah that's why out of all  the big economies Canada is doing OK.

It sure was a different story a few years ago when Canada, was mocked for having too much state intervention in the banking sector. The Liberal government of the time was harshly critisized for not allowing bank mergers and all the other crap that now has most countries in a tailspin. The mantra just a few short years ago was" let  government get out of the way of business so they can  do what they must to make money" Gee that didn't work out so great did it? 

I remember the Wall Street Journal describing Canada as a" bankrupt third world country" Oh Canada with your socialized medicine and your welfare state. You pot smoking gay commies!! You are headed straight to hell!

  If this is hell , stoke the fires, and let us burn, because it feels pretty good.


Britain is going to cut half a million public sector jobs.  Where exactly are these people going to find jobs and how is that going to improve Britain's economy ? Yeah put on your fast food uniform and do your bit to help
your country.  

Last week I voted in favour of a new work contract. A modest raise and another day off. Not bad considering whats going on elsewhere in the world.  I'm just glad I'm hanging in,  can still work, and still have a job.

In November I'm going to a conference about  CCSVI and MS. I was invited by the hospital In Albany, NY where I signed up for clinical trials. Don't know what else there is to talk about but I'm willing to listen.

Wonder Why I'm Cynical?

What a way to start my morning reading this  article in the Toronto Star.

Oh MS Society!! What will you do now that even your board members are going overseas to have CCSVI surgery, while you side with others to deny Canadian  MS patients this very thing!!.  

You have lost your credibility. 

Garlic Thanksgiving

What a beautiful Thanks giving weekend! The weather sunny and mild, perfect for walking AND no need for cooler packs !!  I managed to climb the 165 stairs from the harbour trail to the street. OK I needed lots of breaks, but I did it.

My turkey and pumpkin pie turned out great if I am allowed to compliment myself. The only downer was yesterday with  me dropping the remaining pie and breaking my good ceramic baking dish. I drop things all the time and with ceramic tile floors that means lots of broken dishes. I don't know if that's an MS thing. I do know that my hands aren't as strong as they use to be.

I did as Mr. Carrot asked; planted some garlic bulbs.  Looking  forward to my crop next summer, even if I'm not looking forward to the hot humid weather.  Yes this summer was a challenge. I would never have survived without air conditioning, which worries me. What happens when I can no longer afford the electric bill that is going up more and more?

My last  bill for August and September was a real whopper. We have a new billing system called "Peak Saver" where they give you a chart showing "peak"" mid peak" and "off peak" hours.  "Peak" costs twice as much as "off peak". That's fine if you want to save money running certain appliances, like using the dishwasher after 9:00 p.m. The air conditioner usually runs during peak time and less during off peak.  That means big bucks to stay cool. In future it may be necessary to lobby for a discount to those of us who really need air conditioning to survive?

Now some of you might say that cool air is a luxury, not a necessity, but I'm telling you that the heat  was a killer for me this summer.  The only way I could go out for a walk was if I my clothes were stuffed with cold packs.  Even then there were some days when I just couldn't do it. Forget about going out mid day; impossible, unless you want an ambulance picking me up. Yeah that's how bad it is.

OK so now winter is coming and I will have the heating bill to complain about. Are there any places in the world with moderate temperatures?

So Much Art

Here's a few shots from the James Street Mega Art Crawl and Nuit Blanche in Toronto. I needed a few days to recover after each event (more on the return of super fatigue later). Soul food does me good and what better soul food than art? Huge murals and fire were the themes that stood out most. There was a multi media event at Toronto city hall featuring Neil Young and many other musicians  in  "Later That Night  At the Drive In" The crowds were so massive though, I couldn't get any photos. Good to know an old guy like him can still rock and sound fresh.

Everybody wants to be Michaelangelo!!

A cut out!!

Another Mr. Carrot!!