Tuesday, June 29, 2010


People love to contribute! They love to help out and feel great when they're able to be part of making a difference. So why is it so difficult to be on the other side? Accepting help from others is not as comfortable for most of us, myself included.

We had our first fundraising meeting this past Sunday. Our goal was to come up with fundraising ideas that would cost very little or nothing to put together, would reach a variety of people and be fun for all involved. We want to give people several options to be involved.
This could be through:

 Financial donation (trust account to be set up)
 Donate Airmiles
 Volunteer your time in creating/assisting at events
 Donate silent auction items or prizes
 Help by spreading the word of what we're up to, to all your friends and family

Our next step is of course putting our best ideas into action. To get this started, I'm opening up an informal trust account at TD Canada Trust. This will be in place in a couple days and will not only allow us to track and manage the funds we raise at various events but also allow people to make direct donations if that is their preference.

The two big fundraisers will be a BBQ Open house and an online silent auction.
A small team will work together on each of the events.

The open house will include a variety of activities (yoga classes, salsa lessons, informational talks, singing etc). The open house will also include a poker derby on bikes. Participants will pay a registration fee and receive a map of 5 locations. They will be given 1 playing card at each location to create their poker hand. When they return, their hand is entered into the poker game.

The Silent Auction will be like most other silent auctions but will take place online. This will allow people the ability to view and bid on items regardless of the time of day or their location.

If you are interested in helping the fundraising team with these ideas or if you would like to donate a product or service for the silent auction, please let me know.

After our first planning meeting, I feel I'm overcoming my reluctance to accept contribution from others. I like that we're giving people many ways to involve themselves. It gives people choice and gives them the opportunity to contribute in a way that works for them. It feels more balanced and has me feel much better about how this will get accomplished.

I'm grateful for the work that has already been started and excited to see how it all unfolds. I'll post more information as it becomes available.

Friday, June 18, 2010

Sanoviv Medical Institute

I used to think medical treatment in Mexico was a last resort for people who have Cancer or some other terminal illness where they can receive some secret experimental treatment that are illegal in Canada and the USA. In the last few years, I have become more educated on the subject. Many of the treatments offered in countries such as Mexico are not traditional allopathic (drug based) treatments. Treatments often include herbal remedies, nutritional rebalancing, energy work in addition to allopathic treatments.

When I first heard of Sanoviv Medical Institute, I was in compete awe of what sounded like the ultimate healing center. Sanoviv doctors work in a team environment on every case. The team of doctors (including a Cardiologist, Neurologist, Surgeon, Psychologist, Dentist and Nutritionist) meet each morning to go over the latest results and work together to create the next step in each client's healing.

If you have not already checked out their website, please do.

Sanoviv Medical Institute

I also looked into the qualifications of the doctors who are employed at Sanoviv and again, I was VERY impressed. None of the doctors seem to have only 1 degree. They have several degrees in addition to various non-traditional specialties.

My husband and I had a 1/2 hour phone consultation with Dr. Armonia Rodriguez yesterday. If I had any doubts before that call, she completely relieved me of any concerns. Dr. Rodriguez was very informative, kind and open to whatever we chose to do without any pressure.

The program includes a list of tests prior to the treatments. EKG, Blood tests, Doppler ultrasound and Chest X-rays to name a few. The CCSVI is completed within the first few days of the program follow by a rehabilitation/recovery program. This looks at nutritional recommendations specific designed to increase any imbalances, a fitness program and Chiropractics to name just a few. I'm confident that I will get health benefits from the Sanoviv program regardless of the CCSVI treatment.

This afternoon, I called back to Sanoviv and booked into their CCSVI program. I am now scheduled for the early part of September 2010!

Wednesday, June 16, 2010

Researching Options

I've been doing quite a bit of research on varrious locations/countries that are providing the CCSVI treatment. The challenge has been actually getting full information from the various medical clinics. (Poland, Scotland, UK, Mexico) Poland, Scotland and UK are a few thousand less expensive than Mexico, however, they don't include food, accommodations, follow up scans or rehabilitation after the procedure which would bring the cost to about the equivalent price of Mexico. I also considered flight costs in my considerations. Another big deciding factor is that all clinics require that the scans (prior to treatment) be done at their own clinic. Unfortunately, the wait time between scanning and CCSVI treatment is 1 - 2 months in Scotland/UK (they are hoping to get this down to 1 wk). This could mean 2 separate trips to these countries. I'm not sure what the actual wait time is for Poland. They are filled for 2010 and are adding to the waitlist for 2011 with a deposit of 100 pounds. Both Poland and Scotland are requesting no phone calls or additional emails as they have been overwhelmed with interest. I, however, would like answers to my questions before I decide if I even want to be on their waitlist.

Sanoviv Medical Clinic in Mexico has been very helpful!!! They have emailed me detailed information. I have completed a detailed medical form and I have a phone consultation with Dr. Armonia Rodriguez tomorrow morning. This consultation is a requirement of their medical clinic before they will allow anyone to schedule any treatment. (Which also impressed me!)

I have a team of AMAZING, TALENTED friends who have offered to assist me with coming up with some fundraising ideas. We'll meet in a week or so to put some ideas together.

I'll write more when I have more to tell. Thank you all for your support and interest!

Thursday, June 10, 2010

What the heck is CCSVI?

MS was always thought of as a nerological disease until about a year ago when Dr. Zamboni looked at the disease from a vascular (blood flow) perspective. He started looking at the veins in the neck and noticed that a large number of people with MS had a narrowing of the veins in the neck. The thought is that the narrowing does not allow the blood to flow freely from the brain causing deoxygenated blood to remain in the brain longer or reflux back into the brain. This can cause several adverse reactions including lack of oxygen in the brain, inflammation and iron deposits on the brain tissue. Dr. Zamboni described this condition as Chronic Cerebrospinal Venous Insufficiency (CCSVI). To correct this blood flow condition a surgical procedure was performed. This involves inserting a tiny balloon or stent into the blocked veins in order to restore blood flow. Many of the patients saw fast improvements in symptoms.

After a W5 broadcast of Dr. Zamboni's work the controversy began. People began to call this a "cure" for MS. The MS Society, Neurologists and many others became concerned that there was not enough evidence at this time and further studies would be needed. They are correct. More studies and clinical trials are needed as the work Dr. Zamboni did was not a controlled study it was simply a sample study (without controlls) to test a hypothesis. This is a common first step completed to see if further studies are even warranted. Individuals living with MS are excited about the initial findings and want to take part in the procedure immediately as this finally gives hope for a normal life again. So who's right? Everyone is.

We need to have further research into any link between CCSVI and MS...AND if people have insufficient blood flow and there is a way to correct the problem, let's correct it. It's important that we stop calling this problem a cause of MS when in fact we don't know that it is and doing so causes controversy.

Like many others living with MS, I'm not willing to wait for Canada to approve this procedure. I have been researching various locations that are doing CCSVI treatment. The procedure is expensive and there are already very long waitlists. It appears most countries are charging between $12,000 and $18,000 with variations on what is included (scans/MRI, balloon angioplasty, accommodations, food, follow up procedures, rehabilitation).

The location that appears to be the best choice for me and my family is Sanoviv Medical Centre in Mexico. I have completed and emailed my medical forms. I should be receiving a call from one of the the Sanoviv doctors for a telephone consultation prior to booking the appointment. While I wait, I plan to focus my attention on building my strength and fundraising to help pay for the procedure.

Merging Left

How do you define who you are? Does it change with the job you have or your role in life? Does it depend on where you live or the possessions you have? Maybe it's what you do for fun. Whether you ski or paint pictures.

I was diagnosed with Multiple Sclerosis at 18. I would say at that point my life merged left. It didn't stop. It didn't back up. It didn't even completely change direction. It merged...left.

When I was diagnosed with MS, I didn't really know what that meant. I just thought it was a disease where you eventually end up in a wheelchair. MS is thought to be a neurological disease affecting the brain and nervous system. In short any part of the brain and body connected to a nerve can be affected. There are several types of MS. The type I have is relaping remitting MS.

A large part of MS is invisible so at first it was easy for me to appear "normal". In the beginning, if I didn't tell people I had MS, they wouldn't have known. This doesn't mean it wasn't affecting my daily life. It just meant that the challenges I faced on a day to day basis were not always visible to everyone else.

It was critically important to me that people didn't see me as different. Different in my mind meant weak, not good enough and not normal. Since most of my symptoms were invisible, it was surprisingly easy to hide my illness from the rest of the world.

If you didn't live with me or do physical activities with me, you would not have known that I was running shorter and shorter distances before I would stumble and fall. Unless I complained, you would not have known that the top half of my right leg was completely numb. You wouldn't have known that going shopping and trying on clothes was exhausing and impossible most days. You would never know that daily activities such as drying off after a shower, doing my hair, getting dressed and cleaning the house were huge challenges. Everything I did in a day needed to be planned out in order to compete everything I wanted to do and still appear "normal" to the outside world.

About 10 years ago, the disease began to progress and I started to show some of the more visible signs. I can no longer run, jump or swim. I can walk for short periods of time and wear a brace that allows me to raise my left foot.

I was being forced to deal with the fact that I had this disease and that I could no longer hide it from the world. I had a choice, I could get down on myself for what I could no longer do or I could accept what was so and move on. I chose to accept it.

Don't get me wrong, when I found I could no longer do the things I loved to do I was sad. I would probably even describe it as a grieving period but then I would look at what I could do and that is where I found strength and power. Where I use to jog, hike and take workshops in Ju Jitzu. I instead tried yoga, Thai Chi and took cooking classes.

I have learned that knowledge is power. Letting people in and accepting support is a good thing. Some people say I have an amazingly positive attitude. I say, it's a choice. Circumstances will happen in life. We all have a choice in how we see those circumstances and how we respond to them.

I was diagnosed with MS when I was 18. I would say at that point my life merged left. It didn't stop. It didn't back up. It didn't even completely change directions. It merged...left.