Saturday, February 20, 2010

Saturday, February 20, 2010

Good afternoon,
Just received a new article regarding CCSVI results from Buffalo and Georgetown, I must admit at being one of the skeptics when this was first spoken about yet today I find my curiosity is growing to the point where I'm questioning whether or not getting tested would make sense after all.

Due to the length of the article see link below, "it would be a great idea if we could post PDF files"
the article was received on behalf of Irwin Mortman, autoimmune list of the autoimmune community.
If this type of information is of interest you may subscribe free of charge with the following link

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Have a great afternoon

Read the complete article on CCSVI by going to the link below.

Thursday, February 11, 2010

Thursday, February 11, 2010

This was received yesterday, the big question now is are we dealing with cause and effect?

University at Buffalo
The State University of New York


University at Buffalo
The State University of New York
for further information, contact Lois Baker, 716-645-4605 or ljbaker(a) EMBARGOED FOR RELEASE: February 9. 2010 Story available at

First Blinded Study of Venous Insufficiency Prevalence in MS Shows Promising Results
BUFFALO. N.Y. - More than 55 percent of multiple sclerosis patients entered in the initial phase of the first randomized clinical study to determine if persons with MS exhibit narrowing of the extracranial veins causing restriction of normal outflow of blood from the brain were found to have the abnormality, neurology researchers at the University at Buffalo have found.
When the 10.2 percent of subjects in which results were border line were excluded, the percentage of affected MS patients rose to 62.5 percent, preliminary results show, compared to 25.9 percent of healthy controls.
These preliminary results are based on the first 500 participants in the Combined Transcranial and Extracranial Venous Doppler Evaluation (CTEVD) study, which began at UB in April 2009. Investigators are planning to examine 500 additional subjects, who will be assessed in the second phase of the study with more advanced diagnostic tools. Complete data on the first 500 will be presented at the American Academy of Neurology meeting in April.
Robert Zivandinov, MD, PhD, UB associate professor of neurology and principal investigator on the study, says he is "cautiously optimistic and excited" about the preliminary data. Zivadinov directs the Buffalo Neuroimaging Analysis Center (BNAC) located in Buffalo General Hospital of Kaleida Health, where the study is being conducted.
"The data encourage us to continue on the same course," he says. "They show that narrowing of the extracranial veins, at the very least, is an important association in multiple sclerosis. We will know more when the MRI and other data collected in the CTEVD study are available." The analyses are being conducted by an independent statistician.
The investigation is the first step in determining if a condition called chronic cerebrospinal venous insufficiency (CCSVI) is a major risk factor for MS. CCSVI is a complex vascular condition discovered and described by Paolo Zamboni, MD, from Italy's University of Ferrara. Zamboni's original investigation in a group of 65 patients and 235 controls showed CCSVI to be associated strongly with MS, increasing the risk of having MS by 43 fold.
Zamboni and Zivadinov hypothesize that this narrowing restricts the normal outflow of blood from the brain, resulting in alterations in the blood flow patterns within the brain that eventually cause injury to brain tissue and degeneration of neurons.
The first 500 patients, both adults and children, were grouped based on their diagnosis: MS, clinically isolated syndrome (CIS) and "other neurologic diseases" (OND), in addition to healthy controls.
News Service • 330 Crofts Hall • Buffalo, NY 14260-7015 • Phone: (716) 645-2626 • Fax (716) 645-3765 • E mail:apaqe@ijuffdla«du •

All participants in the first phase underwent ultrasound (Doppler) scans of the head and neck in different body postures to view the direction of venous blood flow. MS subjects also underwent MRI scans of the brain to measure iron deposits in lesions and surrounding areas of the brain, using a method called susceptibility-weighted imaging. Iron findings on these images will be related to subjects' disability and neuropsychological symptoms.
Of the total participants, 97.2 percent were adults, with the 280 MS patients comprising the largest disease cohort examined in the study to date. The majority of MS subjects were diagnosed with the relapsing-remitting form of MS. There were 161 healthy controls.
Doppler scan results were reported on five specific criteria that affect venous blood flow. Patients who met at least two of the criteria were considered to have CCSVI. More detailed analysis of specific Doppler criteria and their association to disease status is underway.
When the 10.2 percent borderline subjects were included in the "normal" category (no venous insufficiency), the CCSVI prevalence was 56.4 percent in MS subjects and 22.4 percent in healthy controls.
In this large MS cohort, the presence of CCSVI did suggest an association with disease progression, a finding that was not shown in Zamboni's smaller cohort, Zivadinov notes.
The finding that 22.4 percent of healthy controls also met two CCSVI criteria requires continuing investigation, he says.
Bianca Weinstock-Guttman, MD, UB associate professor of neurology in the UB School of Medicine and Biomedical Sciences and a co-principal investigator on the study, notes that the results of the CTEVD research will pose new and provocative questions about the CCSVI theory.
Murali Ramanathan, PhD, associate professor in the Department of Pharmaceutical Sciences, UB School of Pharmacy and Pharmaceutical Sciences, and Ralph Benedict, PhD, UB professor of neurology and psychiatry, also are major contributors to the study.
The University at Buffalo is a premier research-intensive public university, a flagship institution in the State University of New York system and its largest and most comprehensive campus. UB's more than 28,000 students pursue their academic interests through more than 300 undergraduate, graduate and professional degree programs. Founded in 1846, the University at Buffalo is a member of the Association of American Universities.

Tuesday, February 9, 2010

Tuesday, February 9, 2010

Every so often someone asks about an AFO. Usually they would like to know what it stands for, what it does etc.
I've had a few of these yet there is a story behind them that I just have to include with the information.

On our first trip to Mexico I was able to walk short distances with a cane yet eventually I found myself dragging my right leg using more of a hip movement to swing it forward. Of course it was tiring so at our resort I utilized a manual wheelchair which made my life a whole lot easier.

Wanting to experience what Mexico had to offer we signed up for a snorkeling tour, the next morning a van picked us up from the resort there were already a few people on board it didn't take long before we started talking. It was evident that I was having difficulty which led to a conversation I had with another passenger. You see this gentleman also had MS yet he wore something on his foot which made it easier for him to walk. It was called an AFO for "articulated foot orthotic" if it wasn't for the fact that he wore his on his left leg he would have let me try it out. Unfortunately I required it for my right leg needless to say we spent most of the day talking.

The trip consisted in visiting four different locations, the first location was not accessible as it consisted of stairs leading to fresh water where you could swim into caverns. The second was difficult yet I did manage with the help of other passengers yet there really was nothing much to see, the third involved swinging from a rope and diving into a freshwater pond. No thank you I passed on that one as well. Our last stop was at the lagoon with water you only see on travel brochures you know beautiful aqua color what you would expect in the Caribbean.
The beach consisted of boulders and not sand which made my approach to the water difficult and time-consuming, luckily I do not give up easily and was finally able to make it to the waters edge of course I wasn't walking at this point and had been hopping along on my bum to get closer and closer until finally we were there. After struggling with a pair of foot flippers or whatever the correct name is I threw them on the beach donned the mask and snorkeling tube and away my spouse and I went. The water was crystal clear as we swam amongst hundreds of fish of all shapes and colors it was spectacular, beneath us underwater structures from the ancient Mayan ruins.
I found it much easier than initially expected, you see when you wear a mask with a snorkeling tube your face is in the water breathing normally your lungs provide the buoyancy you require thus very little effort is required to move around.

Once we returned to Canada it was not long until I made an appointment with my neurologist. Now this is the doctor that diagnosed me with MS and saw me struggling into his office every few months for a checkup. When I mentioned the AFO his response was "oh yes would you like one" couldn't believe it. Basically I traveled from Canada to Mexico in order to meet a gentleman from Florida to learn about this device and meanwhile my doctor knew about the device all along.
At that point I realized that more letters a person has after their name the less they are in touch with reality.
Of course I wanted one. Not knowing what to expect and I met a gentleman at the Credit View Hospital in Mississauga Ontario. He wrapped what was similar to a cast around my leg and foot dried in less than 10 minutes it was removed to be used as a mold to fabricate my device.
After a week or two I received a call to go in and try it on, that is an experience I will never forget for as long as I live. My first step was amazing it was as if my right foot lifted off the floor with absolutely no effort it was so easy that I almost fell over. I would say it extended my walking ability by at least 3 to 4 years, as well since it was molded to my foot wearing it proved to be very comfortable it was if I wasn't wearing anything didn't feel anything it was awesome only wish they still worked today. Apparently you can buy them off the shelf yet if you can molded type are the ones you want to get also some models do not have the hinge at the heel and are fixed which makes walking up or down inclines more difficult.

That is my story about AFO's

Have a Great Day

Monday, February 1, 2010

Monday, February 1, 2010

Impossible to start without wishing my mother a happy birthday, she passed in 2004 at the age of 86 due to a form of dementia yet it is impossible for me to let the day go by without reminiscing about the past and remembering my brother and I were privileged to have one of the best mothers this world has ever seen.

There is little doubt that winter has settled in it is after all February 1st my external temperature gauge registering -6°C which compared to yesterday's -25°C is quite balmy to say the least yet the snow outside makes it virtually impossible to go outdoors.
I'm doing okay yet every part of me longs to be able to get up out of this chair and go for a walk. Recently I've read the blog of a gentleman who spoke of the body's ability to rebuild itself to regenerate its wiring if you will, my question is what do you do when you're dealing with multiple areas requiring regeneration? It's not as if I did not try to walk as long as I could it's difficult to forget those days since I just didn't want to give up yet towards the end my legs would not move at all, honestly anyone who saw me would have likened my efforts to cruel and unusual punishment. I'm not kidding that's how bad it was, that is not to say that exercise is not important it is vital most definitely yet when there are multiple areas of your spinal cord defined as having multiple lesions scattered throughout it is difficult for me to imagine how I could have tried any harder or any longer. My God if regeneration were to take place I have to say I gave it my all yet it didn't work for me.

I did not want the chair who in their right mind would, every time I read about someone who believes they can change the course of the disease by simple acts it makes me question my efforts, did I try hard enough? Maybe if I would've pushed a bit longer things may have turned out differently. Knowing the choice was not mine to make does not make it any easier I was dealt a hand with little control as to the outcome. Medicine today has little to offer with regard to treatment but let me tell you it appears they have the prognosis down path.

Lately it seems I'm always tired usually in bed at 9 PM I'm wide awake at 4 AM listening to the radio where I slip in and out of sleep until my spouse awakes for work.
There was a time when sleep provided an escape which manifested itself in the form of dreams I could walk, run those mornings where great I awoke in the morning feeling as if I had achieved something. Even this brief escape is slowly drifting away it seems I can't even get away from the chair during my dreams.
Yesterday for example we were going on a fishing trip same guys different circumstances yet I recall sitting in the bait and tackle shop wondering what I should purchase as everything I had was sold due to MS. I decided on a few things and after what seemed like hours of preparation as we had to rent a canoe since I had sold mine. Everything was ready we were all set to go yet at the lake I realized I could not board the canoe. The chair was back and it spoiled everything.
My wife left after I was dressed in my chair she does the dressing I just sit there like a dumb doll unable to help to do much of anything except maybe struggle with my T-shirt. When she leaves well things turn dead quiet I will usually watch the news then turn on the computer to see if I have received any e-mails. There are usually several yet they all seem to originate from various drug studies and newfound hypotheses about the disease. It is my fault for subscribing to these publications yet I need to remain current. Several of my e-mails are from acquaintances and some friends usually jokes which quite frankly I don't enjoy as much as I did previously. The friends I had at one time are no longer around and like others have moved on in their lives to other things, I certainly cannot blame them if it were not for knowing what I know today I would have probably been the same.

This is so different from what I was accustomed to it's difficult to comprehend. When I built our first home whenever a neighbor had difficulty with something electrical/mechanical they would always call on me. It was a gift granted I could fix just about anything, from an educational standpoint you want to talk eclectic? I had completed a two-year postsecondary course qualifying me as an apprentice electrician, a course in small engine repair two-stroke four stroke your garden variety type of engine provided another certificate.
At one point I even found myself passing examinations in Toronto qualifying me as a certified dialysis perfusionist. Several years later I found myself looking for another challenge more variety resulting in several transfers to Toronto.
My belief was simple if it were made by man how could it be that complicated? All of that to say I felt needed my contributions mattered they made a difference, whether it was fixing a neighbors deep well water system, teaching a patient how to utilize a dialysis machine, or teaching students about encrypted secure data communications, copiers, printers, facsimiles.
Today nothing but memories it must've been someone else's life since it seems so far away unless I dreamt all of that too.
Bottom line, excuse the pun maybe I just didn't try hard enough.

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