A series of unpredictable events...

Although I shouldn't be, I still seem to be surprised that things always work out. Not necessarily the way I thought they would but the way they are meant to. Higher power, Spirit, God...whatever you want to call it. It comes down to faith. Faith that things will work out, that I will learn the lessons I need to learn and that I don't have to control everything. Or more accurately...that I can't control everything.

1. The weekend before last, our defrosting Christmas tree, all bundled up tight, fell on top of my brace (AFO - Ankle Foot Orthotic) which was laying in the entrance of our house. Humm...this is going to be a bit of a challenge. A big chunk had busted out of the entire side that allows the brace to bend. My Orthotist took what remained of the brace and would create a new one, however, I would need to live without it for the next week.


2. The hard work is starting to pay off. My last visit to the physiotherapist was AMAZING! I know...who talks about going to a physiotherapist as amazing. hahaha...
After going through some exercises, we did some Dry Needling (IMS - Inter-muscular Stimulation) on my calf muscles. He then attached electrodes to the muscles in my leg to stimulate my dorsiflexor muscle to lift my foot.

Since doing this treatment, I've been able to tap my left foot when my knee is bent. Not a full range of motion but lift my toe/foot unassisted.

3. I met with my Orthotist today to pick up my new brace (AFO). He then talked to me about a relatively new technology called a WalkAide.

This is a small transmitter-like thing that is strapped to my leg and delivers electrical stimulation to the nerves that tell my muscles to lift my toe/foot. It works in a similar manor that a wii gaming system (bluetooth technology) to read where my leg is positioned in time and space. When I lift my leg and bend my knee, an impulse triggers my foot to flex. When my leg straightens, the foot relaxes. This system normally costs about $5000.00, however, there is currently a clinical trial taking place in Alberta. This trial requires the client to pay only $500.

What does this mean for me? It means the real possibility of wearing pretty shoes again!!! (yes, like in the picture...hahaha) Okay, it means a bit more than that. :O)

Because the muscles will be doing active work again, the WalkAide will allow the muscles in my leg to start rebuilding. It also is consistently stimulating the nerves that talk to the required muscles. These nerves haven't necessary been used in a while and some are hanging out in hibernation. Once these nerves start to get triggered on a regular basis, they are finding that other nerves (the hibernating ones) start to get recruited to help out.

There will be a few challenges and not everyone is a candidate for the WalkAide. It's going to require learning a new method of walking. This will take some practice and it's a bit of an uncomfortable feeling as a current moves the muscles without me doing anything.

Although I will be trained in how to use the WalkAide and proper walking technique by the Orthotist, the real work and practice will come in the real world...uneven surfaces, no one at my side coaching every step.

Sounds like FUN!!!
Wonder how it will work chasing a 1 yr old? :O)

I'll keep you posted on my progress.

The Mental Game

Sorry for the long delay in my update. I've been back from my follow up appointment in Mexico for 3 weeks now. Everything went very well and the doctors were very happy with my progress. So why the delay in writing an update??? Well, what I've realized is that rehabilitation is truly a physical, mental and emotional process. I expected the physical challenges in rebuilding my health but I didn't anticipate the mental and emotional aspects that could potentially make or break a full recovery.

I'm not sure it's a human tenancy or a woman thing or just my crazy mind that chats incessantly. This mental chatter has the ability to lead me down all sorts of crazy thought paths. Some empowering, some not so much. The key is to hold on tight to my empowering context.

In the past month I have found the mental effort to stay dedicated to my plan the most challenging. What is it that has top athletes get up a 5am and train for hours before starting their work or school day. What has them "stick to it", day after day after day? I'm not an athlete, I don't have the drive and dedication to accomplish amazing feats. It's only certain people that have that. Right? I guess the truth is... nobody is...until they are. In other words, nobody knows what they are capable of doing until they do it. Nobody is a top athlete until they are and nobody retrains muscles and nerves to react normally, until they do.

There was also the conversation in my head that maybe this, how much I've already recovered, is good enough. Not in a "I give up" sorta way but more in an "I've come a long way and I can do more that I have in years so I'll just appreciate where I'm at". Yeah, nice excuse. The truth is, this was really just my way of finding a back door to give up on what I truly believe is possible....because I just might fail. The thing is, if I don't give up on my plan, I just might succeed. :O)

The great thing is that these were just thoughts. Thoughts that came into my head and left just as quickly. The work with my physiotherapist is going extremely well. My gait (ability to walk evenly) is more balance and the dry needling is allowing my muscles to relax enough that I can do exercises to raise my left toe and foot without the use of my brace (short amounts of time). My strength training is also starting to make a noticeable difference in balancing my left and right side.

On the emotional side, I was competing with doubters. Not necessarily real people that have spoken to me personally but doubt in the general public. Like it should make any difference to me and what I believe and yet in some way, it bothered me.

When I returned from my follow up in Mexico, the big story on the news was about "the so called liberation treatment" and the death of one person who had had the treatment. The media loves drama and unfortunately they are not always completely unbiased in telling their story. Referring to it as "The so called liberation treatment" the way you might refer to the "so called Loch Ness Monster".

They began by saying that a number of bad side affects are beginning to show up. Valid statement. A man died. Valid statement. Unfortunately there was also a lot of very important information missing. What was the man's condition going into the surgical procedure? Was the correct protocol followed including blood thinners for a period of time as per Dr. Zamboni? Was he following any rehabilitative processes including supplementation? There was also no information given on how many people have bad side affects and/or died from approved MS medications. In my opinion, these dramatic stories serve only to raise fear and don't provide all the facts that would allow the public to make informed decisions on their health.

I encourage individuals to get informed of both the risks and benefits of any health procedure. I have found that it is imperative that I take on being an advocate for my own health and not rely solely on the decisions of the government or medical profession. In that, I not only take complete responsibility for my health I also take some power over my health.

2 Months After Liberation Video

Well, it's about time for a new updated video. Check it out here.

I'll be leaving for Mexico in a week to go back to Sanoviv for my 2 month follow up appointment. This will mean getting new doppler scans of my veins to check that they are still open and have correct flow. I will meet with a Neurologist and the rest of my medical team as well.

I'll share more when I return.

Slow and steady, it isn't a race.

It feels like a slow process but I think it's just a matter of continuing to manage my own expectations. I was very eager after the CCSVI procedure to take on my health from every direction I could. My plan was to do physiotherapy and daily stretches and active release therapy and Pilates to build my strength and take my supplements and eat gluten free and look after my son and have a great relationship with my husband and bake my own bread and make my own nut butter and almond milk. Unrealistic expectations...hahahaha, probably.

Well, my body slowed me down. After a few days of "light stretching", I pulled the muscles in my butt. I could hardly sit up straight and putting on my socks was NOT fun. So, I re-looked at my game plan and scaled back on what I was taking on and the expectation I had for my progress. Not that I don't have the same end goals, I'm just giving myself a little more time and grace to get there.

So what is my end goal? My ultimate goals are to wear dress shoes (in other words, no brace) and to ride a bike (balance and coordination). Unlikely? Maybe, but if I don't put it out there, I definitely won't reach it. Don't worry, I know there are many other goals to get to before these ones will be reached.

Ok, so what's the update?
It's funny, a lot of what people can see, like my ability to walk with ease or use my left hand, improved within a few hours or days after the procedure. Not completely healed, obviously, but it blows me away that any physical limitations could be impacted without any physical therapy. Now, it's taking physical therapy and work on my part to continue to see improvement on the physical side of things. So the things that I notice improving physically are not as noticeable for others to see. For me, it's not so much about what specific muscles work, but what that muscle working allows me to do. For example before the CCSVI procedure, I could not raise my left arm above my shoulder. Now, not only can I raise my arm over my head but I can hold a bath towel in my left arm and dry off my right shoulder. I can brush my hair with my left hand and wipe my mouth with a napkin without having to set down the dinner fork in my right hand.

The "not so obvious" things that have continued to improve is my energy. I have way more energy than I had prior to the procedure and yet I still get tired. The thing is, it's a different kind of tired. This is the kind of tired you get from being out of shape. I need to slowly build my cardiovascular and muscular abilities. I don't find I get fatigued in the way that has my muscles just stop firing and no longer function. I can go for a walk, clean the house, cook dinner over a hot stove and still feel fine...which is really great. I have also noticed improvements around heat sensitivity. I don't get impacted by the heat as much as I did before. I can have a hot shower and blow dry my hair and not be wiped out. I can sit in a hot bath for 20 or 30 minutes and notice my leg not functioning as well when I get out but it then recovers within 10 or 15 minutes.

Back in May of this year (before the liberation procedure), I made a list of symptoms that were impacting me and things that I couldn't do because of my limitations. There were 38 symptoms listed. When I checked them today (1 month after the procedure), 16 of the 38 symptoms have been positively affected. Not all completely relieved but positively impacted.

Some of the latest things I've noticed...

I can throw a ball with left hand
I can put both hands behind my neck (as in doing a sit up)
I can raise both arms straight up above my head.
I can use a towel with my left arm to dry myself off (except my head…not enough strength yet)
Both my legs seem to be working more equally. After walking several flights of stairs both hamstring muscles were burning. I have not experienced this with left leg for years
I can stand on my tip toes (mostly using right leg)

I go for my 2 month follow-up appointment at Sanoviv in November. It will be interesting to see the positive impacts that can be noticed over the next month.

Here is to a continued slow and steady recovery.

Cheers!

Why Sanoviv?

What other place in the world can you go where your doctor, chiropractor, dentist, psychologist and nutritionist talk to each other? AND...more importantly, listen and learn from each other! Where can you go and be wrapped in a complete healing environment while receiving medical treatment.

Walking into Sanoviv, we were greeted by our coordinator who gave us a tour of the facility and a schedule of appointments for the day. Each evening, I received a schedule for the following day. The days were filled with appointments, classes (meditation, fitness, energy medicine, food prep) and lectures (nutrition, bio-dentistry)


In addition to blood tests and chest x-rays, a Doppler Ultrasound was done to identify any abnormalities with my left and right Jugular Veins.


Scans were done both while laying down and sitting up. Holding my breath and breathing normally.

At Sanoviv, if they see any abnormailies with these veins (turbulance, reflux, narrowing etc) then they move forward with scheduling a venogram and potential venoplasty. Most places that are doing the liberation procedure will only move forward with a venogram/venoplasty if there is >49% blockage showing on the Doppler.

The challenge is that the Dopper, while very scientific, is somewhat subjective to how accurate a measurement the radiologist is able to document. In my case, the Doppler showed a 23% narrowing in the left Jugular Vein as well as some turbulence and reflux. My right Jugular Vein showed no narrowing. Lucky for me, there was enough evidence to have us move forward with the venogram.


The actual procedure took about 1 hour. I was awake during the procedure and although there was some kind of localized anaesthetic, I could feel where the catheter was in my neck and chest. The Venogram showed a 70% block on my Left Jugular Vein (Doppler had measured 23%) and 30% block on my Right Jugular Vein. Venopasty (using a balloon to stretch the vein) was done on the Left Jugular Vein. No venoplasty was performed on my Right Jugular Vein as the blockage was not greater than 49%.




What I like about Sanoviv was that I didn't have to have all my hopes riding solely on the Liberation procedure. They have been working with neurological patients for quite some time with very good results (using their neuro-repair program). They really provided me with a great program (nutrition/rehabilitation/energy exercises/breathing exercises) and support for after the procedure. (They also refund some of the money if they were not able to go forward with the venogram/venoplasty).






The Sanoviv program also includes a detailed take home program (rehabilitation exercises/nutritional requirments/supplements) as well as a follow up program. I knew when I booked my program that it included follow up appointments at 2 months and 6 months. What I didn't know was that the follow up team would be calling me every 2 weeks to check my progress. In addition, I have email access to the Sanovov follow up team if I have any questions or concerns.
This truly has had me feel set up for success and ready to take on the necessary work.

Is Sanoviv the right choice for everyone? Not necessarily. Every individual needs to make their own choice based on their specific situation. I simply want to provide information on my experience so that others can make an informed choice.

Doubt? Fear? Got that.

It's been 2 weeks since the procedure and I've been diligently doing my stretches, eating gluten free and taking my plethora of nutritional supplement to build up my nutrient levels. Although I see improvements, I find it so easy to doubt that I'm not regaining my abilities fast enough. But what does that mean, "fast enough"? I know that it took a number of years to get to the state that I was in and it will take time and effort to get to where I intend to be...so what's my concern? Honestly...I think it is fear that others who see me might not notice the new abilities as much as the lingering disabilities. CRAZY, I know...but that's where my brain goes. At the same time, this is extremely motivating and has me continue to push forward. I just need to continue to remind myself how far I've already come. (I highly recommend doing a before video of yourself if you plan on doing this procedure, as a reminder to yourself)

I also still have fear that things might slip back to how they were. I find I test myself continuously to make sure I can still do the "new" stuff I could do last week. The other day, I went for a walk and when I got home my muscles were exhausted and I was struggling to walk without effort. My heart sank into my stomach as I feared that maybe it didn't work or it's not going to get any better. I sat down and rested for 10 - 15 minutes and suddenly, I was feeling better! I was not exhausted and my muscles were working again. (Not the case in the past as a short walk of 1 KM would wipe me out for the afternoon).

I'm reminded of something Wayne Dyer once said...that I'm totally going to mis-quote but you'll get the idea.

If you plant a garden, you know that the seeds you planted will grow. You don't go outside every morning to dig them up to check that they are still planted. You just wait knowing the plant will appear in a few days or weeks. Our bodies are the same, once you're doing a treatment, know that it worked. Don't test it continuously looking for evidence. Know that it's already healed energetically and your body just needs time to catch up and show physically what is already energetically healed.

So...what's up with me?
As I said before, I have been doing my stretches daily but I'm finding some of my muscles are VERY sore. I booked some one on one sessions with a Pilates instructor to start 1 month from now. I know I need to start off slowly so as to not cause more problems, so I'll just work on stretches on my own for now. Travis, my Pilates instructor, uses a reformer (Pilates equipment to support safe and correct body movements) and is experienced in rehabilitation practices. I've worked with Travis before and he is very good at what he does. If you're in Calgary and looking for such a trainer, he can be found on the web. Pure Pilates I've also been to see my chiropractor and have set up appointment to work with him to ensure the alignment of my neck and spine. He too works with a lot of people who have MS and is very informed about the CCSVI procedure. Dr. Matovich can be found on the web at Natural Way Chiropractics. His technique is very gentle and not the crack and pop method I've always feared. (Although, he tells me that is safe too, I prefer the alternative)

1 week update and video

It's been a bit of a roller coaster the past few days. As excited as I am about my increased abilities, it's also been a bit stressful and overwhelming. Mostly because I put pressure on myself to have everything together and organized immediately. My awesome husband recently reminded me to give myself a little patience and grace. I guess it will take a couple of days to get everything organized as well as it was at Sanoviv. hahaha :O)

I've had to play a little catch up on all that I missed while I was away, most importantly, spending time with my little angel, Logan. In addition to regular daily life, I now have the new added details of eating gluten free, setting up appointments and following an exercise plan as well as ordering and organizing my nutritional supplements to make this whole rehabilitation plan run smoothly.

I am slowly plugging though my "to do" list and feeling much better about my progress overall. I'm also noticing little things improving all the time.

I did a follow up video today to show my progress 1 week after the Liberation Procedure.

Click here to watch the video. MS Liberation

Home again - Day 5 after liberation

I wasn't sure what to expect…my first day back at home, looking after my son, cooking and cleaning for myself and the family.

Humm...it's definitely more difficult to maintain a consistent, calm schedule with a 1 year old running around and no kitchen staff to prepare meals. (hahaha…wouldn’t that be nice)

My left hand and arm are still doing really good. I mention this because most of us with relapsing remitting MS are a little afraid that parts that are functioning may suddenly decide not to...so I'm cautiously optimistic. My left foot is doing ok too, however, I need to pay more attention to proper walking technique as I tend to just walk quickly when chasing after Logan (my son) and not lift my foot. My overall movements are still more fluid. It's going to take some serious physiotherapy and exercise to rebuild the muscles and retrain the movements.

My goal now is taking on the rehabilitation program as well as a strict gluten free diet. The Liberation procedure may have cleared and opened up the veins in my neck but it's now my responsibility to do what I can to rebuild my nutrient levels and muscles. I have a series of stretches to do each day and I'll be booking appointments with my chiropractor and a sports therapist to do active release therapy on my leg and shoulder.

I want to be really clear to anyone considering the Liberation procedure that I have found it so far to be GREAT and is giving me A LOT more energy which actually allows me now to take on my own health. Now having the energy to do the exercises without being wiped out for the rest of the day.

Noticing a few things...

This is cool. I'm typing with 2 hands. Not really well with the left but 2 hands nonetheless.

Yesterday, which was relax and recover day (aka...vacation day)...I did a light stretching class in the morning, later followed by a 45 min pool exercise class, sat in the hot tub for 10 min or so and wandered around in the yard in and out of the sun all afternoon. Not to mention all this was done after having a hot shower and getting ready in the morning. Not much of a challenge for most people but this is something that would have not only exhausted me before but put me basically out of commission by noon. Yesterday...I had energy all day and my muscles didn't feel fatigued at all. (Back to typing with one hand...but it's all baby steps) :O)

Today, I notice I can walk much better without my brace. My left foot is not dropping as much but still very weak and not a lot of contol but gives me courage that I can work from this point at getting things rehabilitated.

(Just finished showing off my stellar walking ability to some people in the dining hall...even walking backwards) hahaha

The greatest thing about the Liberation treatment is that it gives me a kicking off point. It's not like everything is going to be instantly all better with this treatment but with more energy and less muscle fatigue, I feel like I can actually take on a rehabilitation program that will have me functioning more optimally.

Day 1 after Liberation Procedure

I had the procedure yesterday morning. It took a total of about an hour and then I layed in bed for a total of about 6 hours. Although the doppler scan showed a 23% blockage on my left jugular vein, the venogram confirmed there was actually a 70% blockage. The venopasty went well and successfully returned normal blood flow. The right vein showed a 30% blockage with the venogram so no venoplasty was done on that vein. (Generally require a >49% block for venoplasty). The asygous vein did not show any blockage.

After the first hour, I noticed a noticeable relaxation of my left hand. Although very weak, I could wiggle my fingers and there was no stiffness. It was of course difficult to see any other changes as I was supposed to lay still.

This morning, I am walking with more balance and fluidity. There is still lots of stiffness and weakness. I don't want to give anyone the impression that all is back to normal overnight but I am seeing positive changes and I'm looking forward to seeing more over the next period of time. Today is a resting day...light stretching and not over doing anything.

Guess I'll have to just relax by the pool. :O)

Let the healing...

WOW, what an incredible facility! The past 2 days have been filled with a plathora of tests and consultations with various specialists. I am so impressed with the depth of their knowledge and the degree of questions being asking. It has really made me feel like nothing is being left out.

The food here is all organic as well as the clothing, bedding, all building material etc. The air just feels cleansing. We have wheatjuice, golden milk (coconut milk/tumeric/cardimum), fresh vegetable juices and coconut water daily. The food is all organic and SO yummy!

We had the doppler scan yesterday and received the results today indicating several abnormalities. I start blood thinners today and will have the surgical procedure on Friday. Although there are abnormalities, we will not know until the venography is done if they will move forward with the balloon venopasty.

All in all, things are going great and we're really giving our bodies a health boost. I'll write more after Friday.

Thank you!

Wow, I leave in less than a week for Mexico for the MS Liberation treatment. I can't believe how quickly time has passed since Nolin and I decided we were going to commit to having this procedure done. I want to take this time to thank each of you for your contribution to my cause. Whether it was though financial support, helping to brainstorm and organize events, spreading the word about what I'm up to, donating a silent auction item or bidding on Silent Auction items, every bit has made it possible for this trip and procedure to take place and I am very grateful.

We leave on Monday (Sept. 6) and I will be updating my blog as to how things are going. Keep the positive healing energy flowing!

I was just wondering....

It's funny, I've heard, read and watched so much lately about MS and this "Liberation" procedure. I think I just started to assume that everyone knows what it's all about and is just as clear as I am. Then I talked to a friend who had a whole bunch of questions and I realized that there is still a lot that I have not shared that many people may be wondering about.

What results do you expect after returning?
I really don't know what to "expect". Everyone sees different results. At this point, I don't even know if I have any narrowing in my veins. When I get to Sanoviv Medical Institute I will undergo a series of diagnostic tests. One of which will be a Doppler scan. This will show if there is a narrowing in the veins. How much blockage, however, will not be known until the procedure is performed.
The great thing about Sanoviv Medical Institute is that their 8 day program includes a LOT more than just the Liberation treatment. It also includes an individualized rehabilitation and nutrition program, Chiropractic treatments, Ozone therapy, dental diagnostics as well as a completely organic diet throughout our stay. So...the way I see it all this other stuff is going to have a positive impact on my health and my body's ability to heal.

What results do you expect?
People have seen varying results. Some have noted increased mobility, less fatigue, increased energy, no heat sensitivity etc. Some people have noticed changes immediately and other noticed mild changes over a period of weeks or months. Everyone is different. For this reason, I am trying not to have any expectations. Any improvement at all would be a huge blessing and worth the time and money.


What if the veins close up again?
Well...this could happen. They could also just stay open and all symptoms disappear. We really can't predict the future. So why try...
The reality is that there is a lot of really harsh drugs out there that don't actually claim to DO anything except "may reduce the number and severity of attacks" (which says nothing) and yet many people continue to take these drugs and the medical community continues to promote them.
If I see results for myself out of doing this procedure, and yet the veins narrow again, I would most likely do the procedure again. It would not mean that the procedure didn't have positive impacts, it would simple mean that there is still a root cause yet to be discovered that's causing narrowing in these veins.


How do they perform the surgical procedure?
A catheter is inserted through the groin and moves up to the left and right jugular veins in the neck. The small balloon attached to the catheter expands the vein and allows the blockage to clear returning normal blood flow. A stent is put in place only if the vein continues to collapse. This is pre-approved by the patient and only done if absolutely necessary.

This video gives a very comprehensive look at Sanoviv and the work they do. Click Here to see the Video
It's an amazing video and well worth a quick peak.

Silent Auction a Success

Our Silent auction was a success raising about $5000 towards our goal! I hope everyone had fun with the bidding process and managed to scoop up a great deal!

Congratulations to all our winners!

We are less than 2 weeks away... YEA!!!!

Video of Holly's MS symptoms before Liberation treatment.

I decided that it would be a good idea to get a video record of my current physical abilities. This will allow me to visually compare if there is any changes after the procedure. I also saw this as an opportunity to share with everyone a little bit more as to how this disease impacts my daily life.

You can check out the videos on Youtube.

Holly's MS Before Video

Holly's MS Before Video part 2

4 Weeks until we go to Sanoviv...

and I'm feeling...hummm...nervous, excited, hopeful, anxious. Really, it depends on the moment and usually it's all these feelings at the same time. Yes, I'm sure I'm a treat to live with right now.

I hear amazing stories of recovery and relief of symptoms which have me excited and eager to go and yet, I know the reality is that this is NOT a magic solution. I plan to focus the next 4 weeks on preparing my body to be in optimal condition for the best results. Whatever that looks like.

To me, this means eating better and taking my supplements (vitamins). Not that I eat terrible right now (I'm a Registered Holistic Nutritionist), however, with a young toddler and lack of energy, I could definitely eat better....or at least more regularly. I don't weigh very much and with running after Logan and only getting in half my meals, I will not gain weight unless I'm committed to my own health.

I just went to my chiropractor this morning. Dr. Matovich works out of the Natural Way Chiropractic in Calgary. They use an very gentle non-invasive approach. My hope is that this will help my body get as aligned as possible before my CCSVI treatment.

That just leaves the emotional/spiritual side. The biggest part of this means setting Logan up for success while I'm away. I haven't been away from him for more than a few hours since he was born. I know this will be WAY harder on me than on Logan. :O) His 2 grandmas and 1 auntie will be taking turns looking after him while we are away. I'm going to leave him with others a couple of times this month to see how we do. (by "we" I really mean me.)

All in all, I think I'm ready for the big experience. Our fundraising is going very well. The Silent Auction is already getting a lot of attention and there is still a week to go. If you have not already checked it out, the auction items are well worth a view! Holly's Online Auction

Online Silent Auction is Open for Bids!

Our Online Silent Auction for my MS Fundraiser has begun! Check out the unique and high value items that are being offered including airfare for 2 to San Francisco and Vegas, an Apple iPod and a Pin Up Magazine Photo Session!

The Auction will be open until August 17th. It's easy to register to bid. So log on and snag a GREAT deal on some amazing prizes!

Free free to pass this along to others in your circle that may be interested.

Holly's Online Silent Auction Link

Thank you for your continued support!

Love to all...

I want to take a bit of time to share my admiration and appreciation for my family who lives with this disease every day that I do. Too often, I am the only one who gets credit for the courage and strength it can take to deal with the challenges I have been given.

There was a time when I wondered if I would every meet “Mr. Right”. I wondered if it was possible to find someone that I loved AND that would love me, regardless of the extra challenges that I have. I knew that I had no choice as to whether or not I was going to deal with the fact that I had MS. The people in my life, however, they have a choice.

As destiny goes, I did meet Mr. Right. My husband, Nolin, will tell you, he had no choice. When you fall in love, there is no decision that is possible to stop the fate of love. There is no condition or limitations to love and nothing to do but enjoy the ride. I am very blessed and grateful to have Nolin in my life. He is my rock when I feel weak (physically or emotionally), my partner in raising our family and creating our life and he is my best friend; someone who I know will always be there with me, no matter what.

It was not until Nolin and I had our baby that I truly understood how much my parents love me. I have of course always known my parents love me but the experiencing having a child myself allowed me to see their love on a whole other level. When I think of how I would feel if Logan was ever sick or injured, it just makes my heart sad. To me, it’s almost worse to have someone you love in pain as you have no control or ability to make it better. My mom is, without a doubt, the bravest person I know. She is always there for me. No matter what else she has going on in her life, unconditionally. Although she may not even realize it, her love, make me feel better.

I could go on to tell you about the extraordinary friends and family I have but suffice it to say I feel very blessed to have so much love in my life.

Open House Fundraiser a success

We had the first of our big fundraisers this past weekend. There were 35 people who dropped in throughout the afternoon. 33 people made for a very busy afternoon with lots of conversations going on about what we are taking on in Mexico.

We did a balloon draw for a "Romantic Evening Extravaganza" basket. It included a $100 gift certificate to La Dolce Vita Ristorante, 2 bottles of wine from Airdrie Liquor, wine glasses and Chocolate Truffel tea from Oolong tea house. Balloons were sold at $20/balloon. The balloon holding the winning ticket was purchased by Blair Hoffmann! Congratulations to Blair and his wife! We also had a door prize draw for a signed copy of the book "Prairie Dreams" by Courtney Milne. Congratulations to Michele Guinan!

6 weeks to go for our fundraising efforts. I'll be focusing my attention for the next couple weeks on collecting Silent Auction donations.

The on-line Silent Auction will start August 1, 2010. We already have some amazing donations including a flight for 2 to San Francisco, a flight for 2 to Las Vegas, a deluxe toilet (including installation), a signed hand drawn picture of Eric Lindros, Restaurant and spa packages. I will post more as soon as the On-line Silent Auction site is ready to be viewed.

Article in the Airdrie Echo

The Airdrie Echo published an article last week telling a bit about me and the Liberation treatment I'm going to undergo.

You can check the article out online at The Airdrie Echo.

Fundraising Begins

Fundraising has begun!
We will be holding an Open House Fundraiser on Saturday. If you have not yet received an invitation, please consider this my personal invite to you. :O) Children & friends are of course welcome.

When: Saturday, July 17th from 1-5pm (drop in anytime)
Where: Our home at 1943 Woodside Blvd, Airdrie
Why: We're fundraising for Holly to complete a new MS treatment in Mexico
in September
What: There will be an opportunity to purchase your entry into a fun &
unique "Balloon Draw" for an amazing prize basket

We're really looking forward to hosting a great event, including munchies and beverages. We'd love to have you join us if you can make it work that day.


In addition, we have created several alternatives for people to participate if you're interested (and not all of them are financial).

1. Financial donation can be made at any TD Canada Trust branch: Transit 8030 Account 6376290. Cheques made out to: Holly Veillard MS Fundraiser

2. Volunteer your time assisting at events or spreading the word.

3. Donate silent auction items or prizes - items can be gifted to the silent auction by calling 403-948-0448 or by email at nolin.veillard@gmail.com.

4. Bid on Online Silent Auction – Items will be available online for viewing/bidding starting Thursday Aug. 1st – details to follow soon.

Thank you for your interest and your time! I will write more after the Open House next Saturday!

Contribution!!!

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.

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!

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!

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.