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