Michelle's Blog

Hello everyone,

I want to share with you the links from Dr. Code’s CCSVI sessions he held in February.

Audio of Session we had in Saskatoon:

https://picasaweb.google.com/lh/photo/q4xYMFdkd50zjlqpIi7RFA?feat=directlink

Ustream web link of his session in Winnipeg:

http://www.ustream.tv/recorded/12720508

Below are the details for the Canadian cities Dr. Joseph Hewett is speaking at in April, 2011. These are open to the public and free to attend. All of these facilities are wheelchair accessible. Please help me share this information about these sessions far and wide for those who might be interested in attending to hear facts about CCSVI . Dr. Hewett is a vascular and interventional radiologist with Board Certification in Phelbology who performs CCSVI in Newport Beach, California.

April 6, 2011 Calgary, Alberta
Coast Plaza Hotel & Conference Centre
1316-33rd Street NE
Starts at 7pm in Plaza Rooms 3-5
Special Guest Speaker: Ashton Embry
http://www.direct-ms.org/

April 10, 2011 Edmonton, Alberta
Mayfield Inn & Suites
16615-109 Avenue
Starts at 1pm in Rundell Ballroom 1-3
Special Guest Speaker: Dr. Bill Code
http://www.drbillcode.com/

April 14, 2011 Winnipeg, Manitoba
Canada Inns Garden City
2100 McPhillips Street
Starts at 7pm in Ambassador A

April 17, 2011 Saskatoon, Saskatchewan
Centennial Collegiate’s Theatre
160 Nelson Road
Starts at 1pm

April 21, 2011 Regina, Saskatchewan
Regina Inn & Conference Centre
1975 Broad Street
Starts at 7pm in the Ballroom

I agree with Dr. Bill Code’s statement when he says, “I have never seen the medical profession held quite as much at ransom by the very powerful neurologists.”

Knowledge is power which is why I really hope some neurologists come to hear Dr. Hewett speak, so they understand this vascular issue a bit more. This complicated puzzle of MS needs to be researched and worked on with open minds so we can hopefully find the cure for this awful, debilitating disease.

I look forward to the feature I heard MS Village is adding on here—a comment section on our blogs! I can’t wait to hear about your MS journey and if there’s anything I can do to help you.

“God doesn't give you the people you necessarily want; He gives you the people you NEED... to help you, to hurt you, to leave you, to love you and to make you into the person you were meant to be.”

Take Care,

Michelle Walsh

Well I travelled down to Newport Beach, California and saw Dr. Michael Arata in January. I had a consultation with him first and he took a look at my CD images from my first procedure in Bulgaria. He felt I had been “under treated” just because they were using too small of balloons on me. This is at no fault to the doctors in Bulgaria he said. It is just now doctors are learning and doing so much more with this and refining their techniques with this procedure. He thought some of my issues that I had been recently having were with my azygous vein. So he booked me in for a venogram and angioplasty procedure the next day.

He found inside my veins that what he suspected was true. He worked on my azygous first and then both jugulars again. I did not need any stents and a procedure was done on my valves so hopefully it will keep the blood flowing properly again. I am glad I got seen again because I knew something was up with my blood flow. So thanks to Dr. Arata I am back in the “Awesome Zone of Proper Blood Flow” again! I want to also thank the amazing nurses Divya and Patty who took such good care of me.

Here are the details of where I went: http://www.pacificinterventional.com

Now knowing what I know this time around, I would recommend you try and see a doctor closer to home. It was better for me to fly closer to home for this and also not to have a language barrier. I had three full pages of questions to ask Dr. Arata at my consultation and he patiently answered all of them and never once did I feel rushed into anything. It also was easier having nurses who spoke English for my after care when I came out of the OR. My procedure took maybe 45 minutes this time around. I was once again not in any pain during or after the procedure.

A video was made on Youtube by my MS friend Mark who went to Stanford for his procedure. It explains a lot of what happens and takes the fear of the “unknown” before you go for your procedure. http://www.youtube.com/watch?v=cwc6QlLVtko

There is a well-known Canadian doctor Dr. Bill Code who has written many books because he also has MS. He used to be a Board Certified Anesthesiologist and he has recently been treated for his CCSVI too. I am having an information session here in February in Saskatoon with him to speak to anyone who is interested in hearing his experience with it. You can read his story at http://www.drbillcode.com/. He is also speaking in Winnipeg too before he comes to Saskatoon. If you want more details look me up on Facebook, I have all the details. They are open to the public and free to attend.

Regards,

Michelle
www.angioplastyforall.com

My blog this week is dedicated to my best friend, my mom. She gave me this poem to read after I was diagnosed with MS 19 years ago. I like to read it often when I am having a tough day. 19 years later, I still read it and it reminds me how powerful positive thinking is.

ALWAYS LIVE LIFE TO THE FULLEST

Don’t let go of hope,
hope gives you the strength to keep going.
When you feel like giving up,
don’t ever quit believing in yourself.
As long as you believe you can,
you will have a reason for trying.
Don’t let anyone hold your happiness in their hands.
Hold it in yours, so it will always be within your reach.
Don’t measure success or failure by material wealth,
but by how you feel;
Our feelings determine the richness of our lives.
Don’t let bad moments overcome you;
be patient and they will pass.
Don’t hesitate to reach out for help,
We all need it from time to time.
Don’t run away from love but towards love,
because it is our deepest joy.
Don’t wait for what you want to come to you.
Go after it with all that you are,
knowing that life will meet you halfway.
Don’t feel like you’ve lost
when plans and dreams fall short of your hopes.
Anytime you learn something new
about yourself or about life,
you have progressed.
Don’t do anything that takes away
from your self-respect.
Feeling good about yourself
is essential to feeling good about life.
Don’t ever forget how to laugh
or be too proud to cry.
It is by doing both that we live life to its fullest.

I hope you enjoyed this poem. As well, I keep a saying from my MS friend, Tim, close to my heart: “My attitude determines My altitude”.

Have a very Merry Christmas and a Happy New Year!

Regards,

Michelle Walsh
www.angioplastyforall.com

I’ve been struggling with how to say this, but here goes…of course there are risks to venous angioplasty, just like any other invasive procedure. We should be seen here, in our own country for care but the facts still remain we are not as fortunate as our MS friends in the US who can go to a vascular interventional radiologist to have CCSVI tested and treated. Our doctors in Canada want to help, but for some reason aren’t allowed. So the million dollar questions is: “who is blocking this?” I know of a few conspiracy theories out there but nothing has been proven yet. I believe in the end, like anything else, the truth will prevail.

I now have to go back abroad for my six-month check up and God forbid I restenosed for an intervention to make sure my blood is still flowing. I know I might have to have an intervention for my vascular condition again because venous angioplasty is often not a onetime event. A vascular doctor/interventional radiologist is essential because CCSVI is a vascular condition we need follow up on.

But I was told by a vascular doctor, who saw my medical records and the CD of my MRV and venogram that he could not see me and I have to go abroad again for this. There is no other way to describe this except it is wrong and unethical for MS patients.

Please watch this clip of an amazing doctor named Dr. R. Torrance Andrews from Seattle, Washington. I have had the pleasure of speaking with him a few times on the telephone now. 
 http://www.komonews.com/home/video/106178788.html?tab=video

Well as frustrating as this whole unethical mess, I get through the days looking into my childrens eyes knowing that the fight we endure today in Canada will not be going on in their generation. For this, I will continue to be an advocate for MS patients in Canada until this discrimination is made right.

Enjoy your week,

Michelle Walsh
www.angioplastyforall.com

Well isn’t that interesting how a chairperson of the MSS Chapter in Ontario is going to Poland? I commend you for going public Julie Goodwin and your radio interview on the Roy Green Show was very well done.

We had a very productive meeting that I was involved in with our MP, Ralph Goodale from Wascana, Saskatchewan and MP, Dr. Kirsty Duncan Etobicoke North, Ontario.

I have been asked a lot about why I wanted to go to Bulgaria for CCSVI? I didn’t really know at first. I just did my homework on the places doing CCSVI, researched the doctors doing the procedures, the costs, and I chatted with others who had went to various places about their experiences. I have heard a few of my friends say they wanted to go to a destination so they can make a holiday out of it too. I personally did not want to base my decision on this.

I have a great update on a special lady I call our CCSVI poster girl—her name is Barb Farrell. She is getting out of the facility she is at now and going back home to her husband Patrick and her son after months of recovery after she was bedridden and air-ambulanced down to the USA to save her life and unblock her blocked veins. That is what this is all about, our quality of life.

Why can’t our Canadian government set the MS aside and see CCSVI for what it is? CCSVI is a vascular procedure for anyone who has blocked veins—but not us because we have MS. Now this is discrimination. I have already put a complaint into my Saskatchewan Human Rights committee and waiting to hear back because I cannot even have “follow-up” with any vascular surgeon in Saskatchewan. This is wrong.

I created a group on Facebook if you want to meet others who have gone to Bulgaria or if you already have a date there you can find answers to your questions before you go to help you. Look up CCSVI Bulgaria in the search box; you’ll find us and many more groups created for CCSVI and different locations.

I am three months post angioplasty and still doing well. I have had some quality of life given back to me and I know I still have MS but this was a pretty good treatment that has helped me. I will know once I get an MRI done in December to see if this has helped slow my progression down and if I have no new lesions on my brain. I stay positive and hope for the best.

Check out my friend Mary, she is so good at being a teacher:

http://www.youtube.com/watch?v=qXsYoVnUapE

Remember to not get stressed out; it is not good for you whether you have MS or not!

Michelle Walsh

www.angioplastyforall.com
 has a new $20/month club

This week I am dedicating my blog to an amazing neurologist Dr. David Hubbard from San Diego, California who has received IRB approval in the US for his clinical trial going on right now with CCSVI and MS Patients.

In his video, Dr. Hubbard goes over:


- his involvement, through his son's case, with CCSVI and MS
- theories of MS (conventional, Zamboni, and his own)

- detecting CCSVI using FMRI (venous undershoot)

- politics of CCSVI (why aren't neurologists interested? why the hostility?)
- the future, including treating non
-MS CCSVI sufferers (chronic fatigue, etc), including his wife and daughter, who have constrictions in exactly the same places as with his son

 http://www.youtube.com/watch?v=bUku2TmZahI

His site: www.hubbardfoundation.org

There are so many people involved with making this all happen finding out Dr. Zamboni’s amazing discovery and research. I think it all stems back to one special lady named Joan Beal from the US—I thank you Joan from the bottom of my heart because you brought this information you found out from Italy to North America last year and have helped change so many Mser’s lives since. She is an angel here on earth.

Dr. Mark Freedman, have you talked to Dr. David Hubbard, a fellow Neurologist?
You need to sir.

http://www.ctv.ca/CTVNews/WFive/20100409/w5_liberation_update_100409/?ref=nf

Now you really need to watch these videos done by my friend Mark who has MS and is in the Medical profession in the USA. It makes so much sense about Fibrin in our blood when you see this. I know I am not a doctor, nor would I ever claim to be, but this makes complete sense when you see how MS is a complex puzzle. Many things we need to do for our bodies when we have MS.

Part 1   http://www.youtube.com/watch?v=AvhXUyPnNW8

Part 2   http://www.youtube.com/watch?v=bPdSfKnqHcY


I know I still have MS but I am doing my own research on how to make my life can easier. It sure helps in this battle with the MS Monster to have proper blood flowing in my veins now and meeting smart friends. I want to share this information with all of you now. Pay it forward right?

Stress is not good for anyone whether you have MS or not, so do something that relaxes you—it’s good for your health. Life is too short.

Take care,

Michelle

This week I dedicate my blog to a very special lady who has been fighting so hard for Canadians with MS. Her name is Dr. Kirsty Duncan, an MP from Etobicoke, Ontario.
Below is an article about Dr. Duncan:

 “Advocating for people with neurological diseases such as MS is one of the primary reasons Duncan sought elected office, she says, and she describes people suffering from the disease and the doctors working diligently to find a cure for them as "heroes."

"I simply work quietly in the background to bring their issue forward," she said.

Read full article here: http://www.vancouversun.com/health/fights+battle+sufferers+across+Canada/3506432/story.html#ixzz0z9iJWO7x

This amazing woman has been fighting so hard now for months for all of us. Working on little sleep and trying so hard to be our voice in the House of Commons. I think she deserves a huge thank you from all of us who suffer from MS.

Check out her webpage at: http://kirstyduncan.ca/

I can say I would really like the opportunity to meet this classy, strong lady one day and thank her in person for all she has done and still continues to do for us every single day.

In recent email correspondence, she asked how it went for me in Bulgaria and what has had improved. I said, “I hope this helped to slow the progression down of my MS.” She responded back with very positive words of encouragement. Now why isn’t this Doctor our Federal Health Minister I ask?

My son and I did up a short video a few weeks ago. Both my children light up my life every day and I invite you to watch our video here. This is why I fight so hard not only for every single MS patient in Canada but for my two babies.

http://www.youtube.com/watch?v=-do3KFvx8mA

I pray to God my children don’t have this awful disease, but it is in my family. If they did have it, then they should be allowed this venous procedure for their blocked veins in the country they were born and raised in! Otherwise, we will be on the first flight to Sofia, Bulgaria to see Professor Grozdinksi and his team!
 
http://www.tokudabolnica.bg/en

At this time,  Dr. Kirsty Duncan, I want to thank you publically so much for all your hard work. You are very much appreciated and we all thank you. You are one of our “heroes” in this fight with CCSVI and MS.

This is a message I received from a facebook friend:

“Shelley Black is one of 4 CCSVI advocates participating in the first CCSVI Working Group meeting hosted by the MS Society in Toronto on September 20th. The working group will be comprised of 4 CCSVI advocates, 4 medical professionals and 4 MS Society board members. Shelley is requesting that anyone who has had the angioplasty treatment for CCSVI send her a treatment testimonial so that she may bring as big a stack as possible with her to present to the working group. Shelley’s email address is shelley@zingsphere.com. Despite how you may feel about the MS Society, the advocates going there will be doing everything in their power to fight for your rights!”

Our CCSVI Information session in Biggar, Sasktchewan went very well this weekend I was very honoured to have told my experiences in Bulgaria. As far as I am concerned, they are one of the best doing this procedure. Them and Poland have had many MS patients treated and are really good at it! If you want to check the Bulgaria website to get on their waitlist, go here:

http://www.tokudabolnica.bg/en


Go under CCSVI Center and you’ll see a spot to register in one of the tabs to the left hand side. This is not happening anytime soon in Canada, we are going so slow that we are actually going backwards!

Help us win this fight. We need help raising funds for this battle we face and 100% of donations goes to this cause—no administration fees like some other non-profit organizations we know. www.angioplastyforall.com

See you next week everyone

Michelle

So let’s talk about looking after your own medical information—I call this medical management. Let’s face it, we should all have as much information of our own medical files as we can. I always keep track of certain things such as weight, blood pressure and any other pertinent information after each examination. Plus any information from laboratory testing such as my blood counts, cholesterol, hormones, x-rays, electrolytes, etc is always filed. I also keep a record of my surgeries and any letters my neurologist wrote to my employer while I was working. You never know when you might need to produce copies of these things down the road. I also like to have a list of the current medications I’m on. In this day and age we can sometimes be just a number in the healthcare system—so by ensuring we have copies or records of our own health can give us some sort of reassurance, in the event we or someone else needs medical information.

Being an organized person helps when you are sick. I hope this advice can help you or someone you care about.

Michelle
 

I was with Verna Mang in Bulgaria this July for angioplasty and she has expressed how so many of us with MS feel right now regarding this CCSVI issue and our Government not allowing us to have a procedure that is offered to every other Canadian who has vein blockage. These are our lives here and I sometimes wonder if they honestly remember that. Please read her article below.
 


Liberation Treatment Should Be a Non-Issue



Is dying better than angioplasty? Is progressively getting more disabled better than angioplasty? Is going blind better than angioplasty? Is lying in bed missing your kids growing up better than angioplasty?



We all know the choices we would make given these alternatives. Here in "democratic" Canada these choices have been taken away from people who have Multiple Sclerosis. Our federal and provincial governments have prevented doctors who want to help people from fulfilling the oath that they took when they became doctors.



Angioplasty is a well known, standard medical treatment. It is not a drug and clinical studies are not needed to prove that it is safe. The approximately 2,500 successful liberation treatments done to date around the world should be enough to encourage the Canadian health-care system to allow the treatment as an option to patients.



The arguments against the Liberation Treatment are: “it hasn't been proven to help people with MS”; “not all the clinics are using the Zamboni method”; “Stents are dangerous in veins”; “we only have anecdotal evidence of the results”; “we don’t know the long term impact”; “the veins can re-stenos”; “not everyone who has MS has CCSVI”.



If we don’t do the Liberation Treatment and track the results we will never be able to prove anything. There is a global community of doctors that are performing the procedure, sharing their experiences and learning and improving together. We are falling way behind because we are not even in the game! Thousands of dollars are leaving Canada because we refuse to listen. The MS Society is not listening to its members; the provincial and federal governments are not listening to their constituents; the health care systems are not listening to their patients. Brad Wall is the first person in power who has stepped forward to say we need to do this.



If we could change this scenario in the thousands of Canadians with MS we could easily pay to do the procedure, track the results and become part of the global medical community that is sharing information. We don’t need to do everything ourselves. We don’t need to prove everything ourselves. We could start with the many Canadians that have already had the treatment. Follow them, collect the data about them.

What we need to move this forward is:



-         Introduce compassionate legislation so that anyone can get medical treatment for compassionate reasons



·         Allow the Canadian Vascular Surgeons who’ve already been trained to start doing the Liberation Treatment



·         Allow other interested vascular specialists and radiologists to get the training that is needed to ensure they know how to test for CCSVI and do the angioplasty



·         Set up a tracking system to gather data about everyone who is tested and treated.



·         Include open minded neurologists to follow their patients before and after treatment. Work as a team.



·         Connect with the global community of doctors to share information

If governments really feel that we can’t afford to do this, call it an elective procedure and charge a fee for having it done. At least the money would stay in Canada and benefit Canadians.



Most importantly, allow us to make a choice about our life. Don’t make the choice for us because you’re scared, sceptical, or think you know best.



“I’ve had the procedure and I’m improving for the first time in over 14 years.”
Verna Mang

I have been on many radio talk shows across Canada again this week and had overwhelming responses with them. Every week more and more Canadians come home feeling better, have some of their quality of life returned and now have hope. Some say it’s a “placebo” effect we are having. I don’t think this is the case, but even if it is, I will still take it because nothing I tried previously in the last 18 years made me feel this good.

I have trusted my neurologist with my life and I still do. I do not knock him for any of the drugs he has put me on over the years because this is what was best at the time. But, as of today I am not on any medications whatsoever and that is pretty liberating in itself.

I have good days and some down days. Now the down days are not even close to my down days before. I need to remember I am still healing and I am not Super Woman and that Rome wasn’t built in a day. I take care of myself; I am stepping back from the media now and letting the others who are coming back take the reins so-to-speak.

I am seeing a neuro-physiotherapist this week and I am so excited. She has specialized training and a degree in neuro-sciences and lots of experience in helping people with Neurological illnesses, like MS. It’s a more in-depth program she will have me on to help work my muscles that have not worked in so long and are starting to wake up now! This is my long road of rehabilitation and I know there is probably permanent damage on my right hand side I can’t bring back, but I can try right?

I am now over one month post-angioplasty and felt better in the last month than I have in 18 years.

Have a good week everyone,

Michelle
www.angioplastyforall.com

Note from MS Village:  Michelle will be away on vacation next week and will not be providing a blog. Please check back the following week, to catch up with her.

To my readers, you are probably wondering why we had to remove the info about docs in USA doing CCSVI testing. Well it has been brought to my attention that not all doctors have their special IRB approval they need in the US for this. I was given the wrong information about a few of them. So to protect ALL these amazing doctors who are trying to save MS patients’ lives right now, we are NOT posting any American doctor information.


I have to say to these doctors who probably had a heart attack when they saw their name on this website that I truly and sincerely apologize and I never meant to stress you out or get you in any trouble, because I know you are dealing with the same nightmare with all of this controversy, as we are in Canada. Rest assured this info will never be publically displayed by me ever again!


So, if you want to find out more about this, you guys need to do your own homework. It is like being a private investigator and yes it sucks, but this is the reality of it—how hard both the American medical system and our own Canadian medical system are making it on all of us. It won't be easy anytime soon, so if you want to get your name on lists abroad; they don't have these issues we have over here and are allowed to say this publically. They are doing CCSVI and have had their country's approval.
 


Foreign places doing CCSVI testing and angioplasty procedure:



BULGARIA
Prof. Grozdinski, Sofia
Email: grozdinski@dir.bg


MEXICO
Email: info@cardioabroad.com 
Doctor’s Assistant (623) 512 0692


Thank you for your interest in CCSVI treatment in Mexico. We currently offer two high quality, convenient options in Mexico:



1.    Star Medica in Merida. The modern Star Medica Hospital is a full tertiary care hospital with 53 beds, the latest equipment and is currently the only private hospital in the region with the Certificate of General Health Council. Please see the bio of Dr. Elena Solis attached. Dr. Solis has been trained in the United States as well as internationally. She also has treated patients with CCSVI. We have created an all-inclusive package, airfare and meals excepted. The cost estimate is USD 9,800 for balloon angioplasty. See attached for a detailed description.

2.    Hospital Angeles in Tijuana is a state of the art hospital with 116 bed and centers of excellence in many specialties.  Hospital Angeles has recently committed to obtaining JCI accreditation. Please see the bio of Dr. Jorge Luna, who has been trained in the United States. Cost estimate is USD 12,200 for balloon angioplasty, which includes testing. Airfare will be additional.

Currently our waiting times are virtually non-existent, but please contact us to schedule your treatment soon. Best regards, Janet Kwan, Senior Case Manager, BSN, PHN, RN
WorldMed Assist jkwan@worldmedassist.com

(866) 999-3848 X740   www.worldmedassist.com


 

INDIA

Dr. Mohamed Rehan Sayeed

rehan@heartcareforyou.in

Tel - 00919900236825


INDIA SAFEMEDTRIP (INDIA)

http://safemedtrip.com/CCSVI-Liberation-Procedure.html
E-mail: help@safemedtrip.com


INDIA - Delhi
Tom Hiland
BoomerHealthTravel.com

A division of India America Global Solutions, Ltd.
333 S. Allison Pkwy., Suite 305

Lakewood, Co. 80226
303-987-2220--Voice
800-466-9502--Toll Free
303-987-1010—Fax

INDIA
Dr. Kumar and Lou Deitrich
liberationgateway.com/ 


JORDAN
Dr Mamoon Al-Omari - King Abdullah University Hospital
Jordan University of Science & Technology
Interventional Radiologist

mamoonomari@hotmail.com

JORDAN

Dr liqa Rousan - King Abdullah University Hospital

Jordan University of Science & Technology

Diagnostic Radiologist

rendez_vous15@hotmail.com


MUMBAI

King Edward Memorial Hospital

Dr. Anil Karapurkar

Dr. Nishant Aditya


POLAND
Dr. Simka, Pszczyna, since October 2009

See This is MS forum: Procedure in Poland
See Venöse Multiple Sklerose Forum: Rici hat sich nach OP gemeldet, nach O.P.
See CCSVI 1st OP in Poland (Youtube)
See website of Dr. Simka

Email: mariansimka@poczta.onet.pl


POLAND
EUROMEDIC (POLAND)

Euromedic Poland sp. z o.o.
http://www.euromedicpoland.com/19,ccsvi.html
Biuro Zarzadu
ul. Fliegera 5/140-065 Katowice

Centrum Obslugi Pacjenta Hotel Qubus, pokój 2701
ul. Uniwersytecka 13 40-007 Katowice
telefon: +48 32 6030230, +48 32 6030231
telefax: +48 32 6010960
e-mail: info@euromedicpoland.com
 


POLAND
Dr. Tomasz Ludyga, EuroMedic

Rolna 18

Katowice, Poland 40-555
Directions | Website
It has been verified Dr. Tomasz Ludyga can work with patients in English and can be contacted at t.ludyga@poczta.fm; see post on pricing for details.

Phone: 32 354 05 87


POLAND
Ameds Online Registration

Al. Ujazdowskie 41

00-540 Warsaw, Poland

Mobile: +48 695 025 431
Fixed line: +48 22 319 5681
Fax: +48 22 319 5680
E-mail: ms@ameds.pl


SERBIA
Dr. Sasa Zivic, Nis

CCSVI Treatment

drzivic@walla.com


A note from MS Village:

Sorry that last week’s blog from Michelle didn’t make our posts—we faced a few minor internal issues, but we are back up and running full speed and truly thankful that we can share this great story. Wishing Michelle all the best and great to see her blog posts back and part of the community.

Hi All,

Pleased to be home! And very happy and excited to be Liberated! While in Bulgaria, I documented my trip and treatment on my personal blog. Since, I’m back, I wanted to share with you all on MS Village how things went. I’ve listed my Liberation events in chronological order below. Please enjoy.

Now in Bulgaria – Tuesday, July 13, 2010

Hello everyone. Chris and I had a long travel. By the time we got to the hotel, we’d been on the move for 25 hours. I went wheelchair the whole way, with every connection for our flights and am so glad I did that. I don't think I would feel as good as I do, without doing that. So, after a good sleep we are getting ready to head to the hospital this morning. Chris and I have already met over 12 Canadians staying at the same hotel who have already had their surgery, and had results varying of course. I needed their support last night and it was good to hear their experiences. I am calm today. I was nervous last night of course because of the reality of being here now and because this is happening today.

I have dreamed about this moment for so long; ever since the W5 program on Dr. Zamboni's findings last November. I am glad my husband is my "rock", I really needed him when I was worrying last night. I had a good sleep and woke up calm and ready with no reservations this morning. I think the others I have met at the hotel said 75% of the people here for this procedure are Canadians. Three of them I know from Saskatchewan; they’ve had their surgery and are recovering in hospital still. I will try to see them this morning if I can, to see how they are doing. My friend Kelly and I go in today right after one another. God I ask you to please watch over us today and these amazing doctors who will change our lives today. I won't be able to post anything for the first day because they make me lay completely flat for hours after my procedure so I don't bleed out the site they went in. As soon as I can update you I will. Please say a prayer for me today.

Got bumped – Thursday, July 15, 2010

So my procedure got bumped to today because they had emergency cases. I am the next one to go here, just waiting patiently in my room with my husband. Thank heavens for my friend Kelly who has his laptop in the hospital—I can update you all as I know how anxious you are to hear how it goes for me. My tests yesterday with the Doppler showed I had severe stenosis in the left jugular vein; the right jugular vein is blocked and has reflux in it. They also said I more than likely have blockage in my azygous vein, but they won't know exactly until they get in there today. So stay tuned! The next time I get to blog, might be in a day or so, as I have to lay flat for quite awhile after the surgery in my bed. So rest assured everyone I am almost there and have been in hospital now for 24 hours! Everyone else here from Saskatchewan got done already and I have met so many Canadians here—it feels so good as we are a very untied group no matter where we are from, MS bonds us.

I had my angioplasty today!

So today, July 15, 2010, a miracle happened in Sofia, Bulgaria for me. I had the angioplasty procedure and it has changed my life forever! I went into this with the mindset if I have permanent damage and all this can do is slow down my progression of my MS, well that is all I can hope for. I have had immediate results while I was on the operating table. I ended up having 50% stenosis in my right jugular vein, 95% stenosis in my left jugular vein with reflux (which means blood was going the wrong direction back into my brain...not good) and 75% stenosis in my azygous vein.

These amazing doctors unblocked all my stenosed veins and stretched them open with the angioplasty balloon and they all responded very well and stayed open! The doctor was very happy and I cried on the operating table because instantly when the left jugular was unblocked and reflux corrected, I felt from head to toe, the sensation came back in my right hand side that I haven't been able to feel for over four years. Then I didn't think I had any problems with my eye sight, but it was like I could see clearer and I was so shocked! I had absolutely no pain or discomfort with any of the procedure. I made it through and am feeling totally Liberated! I am just in awe tonight, but getting tired now and ready for bed. Miracles can happen, I am living proof. I also want to caution you guys that if someone is trying to make a profit off of giving you this CCSVI and claiming they can get you in faster somewhere if you pay them they are lying and are only trying to profit off of you being sick. I do this for the sheer gratification of helping more MS patients and do not ask for anything except to let me know how it went after you get it done.

So beware of a wolf in sheep’s clothing guys, he is out there trying to profit from this!

Update! – Monday, July 19, 2010

I am sorry I haven't been able to update you all sooner, but they did not discharge me from hospital until today. I doing better every day, so rest assured I am doing well. I have a long road ahead with rehabilitation and muscle building on the right side of my body, but I have come this far and will do it. It will just take time to retrain and build the muscle loss back up. For those of you coming here to Bulgaria or questioning whether or not if you should, get your name on their list! Email them: Prof. Grozdinski, Sofia, Bulgaria at grozdinski@dir.bg

They are one amazing team who cares and are awesome doctors! Those of you who know me well can see this...I have a great rapport with the doctors here and they have given me a nickname: "Fresha". They said when I was on the operating table after, I brought to them a "breath of fresh air" with my positive attitude and joking humor. I have such a bond with this whole team and I kept thanking them for literally saving my life because that is what they did.

My body had such stenosis and blood flow restriction; I can see how we could die from MS complications. You kind of need blood flow for everything in us to run properly. As those before me say "welcome to the dark side" LOL! All six who have had this done this week are doing well, and every day we notice more improvement. I just want to thank you all for your love, prayers and support, for not only me but my entire family this week. You have helped us get through the most challenging and rewarding experience of my life. Now though, is my time to be selfless and give my husband 100% of my time and attention—so no more updates until after I get home. I know lots of you who are coming have so many questions and I will answer every one you have. Now is my time to have time with my best friend, husband, love of my life and biggest supporter since we met eight years ago! He deserves it and more.

Going Home Soon! – Tuesday, July 20, 2010

I went to the hospital today to meet up with more Canadians I have met on Facebook to give them support. Chris and I are going out for a nice supper at an Italian restaurant close to the hotel here. We are both so excited to get home, we really miss our babies. I'll post more in a few days.

God Bless, Michelle

In closing…

If you have MS then you have vein blockage. The doctors here told me when I asked that 100% of people with MS have CCSVI. Everyone has it in varying degrees.

So my advice to you is get your name on some lists to get this done, even if you think your MS isn’t bad, it will be one day and by getting this treatment, you can prevent permanent damage from happening to you. Of course I am biased and want everyone to go to Bulgaria and see Prof Grozdinski, but reality is, you need to just get in wherever you can to get this done. Time is of the essence for MS patients. We are like a ticking time bomb!

Below is a list of contacts for CCSVI:

MEXICO
Short wait time and I have heard good reports about them)Email: info@cardioabroad.com  Doctor’s Assistant (623) 512 0692

Merida and Tijuana Mexico by Dr. Jorge Luna, who has been trained in the United States. Janet Kwan, Senior Case Manager, BSN, PHN, RN

WorldMed Assist: jkwan@worldmedassist.com

(866) 999-3848 X740   www.worldmedassist.com

COSTA RICA
Travis 1-800-721-4445 


GERMANY
 Univ. Prof. Dr. med. Thomas J. Vogl
Goethe university of Frankfurt

Email: t.vogl@em.uni-frankfurt.de

INDIA
Dr. Mohamed Rehan Sayeed

rehan@heartcareforyou.in


INDIA SAFEMEDTRIP (INDIA)

http://safemedtrip.com/CCSVI-Liberation-Procedure.html
E-mail: help@safemedtrip.com

INDIA - Delhi

Tom Hiland

BoomerHealthTravel.com

POLAND
Dr. Simka
Email: mariansimka@poczta.onet.pl

POLAND
EUROMEDIC (Katowice)

http://www.euromedicpoland.com

e-mail: info@euromedicpoland.com

POLAND
Ameds

Warsaw, Poland
E-mail: ms@ameds.pl

SERBIA

Dr. Sasa Zivic

drzivic@walla.com

JORDAN
Dr liqa Rousan - King Abdullah University Hospital

rendez_vous15@hotmail.com

So until next week I wish you all the best and miracles do happen for real!

Michelle

So I am counting the sleeps until I am in Bulgaria getting the Liberation treatment. Silly to be looking forward to a surgery, but I really believe I have nothing to lose and everything to gain by getting this done. I am currently on no medication; I went off so I can give the Liberation treatment a full chance and see how it works for me as per my neurologist recommendations.

I have had so many emails and calls still from MS friends who I have met since the newspaper articles and Facebook. They’re from Canada, the United States, Mexico, Europe, Australia and New Zealand. They just want more information on which doctors in the world do the Liberation procedure. So I gladly give this out.

I pace myself because I have to. Making sure I am well rested for this long journey ahead of me is my priority. I love helping others who want this information and I don’t make anything off of them either. That is not why I went to the media. The reason I did, is so I could help others who wanted to know more about CCSVI. Helping others is just what you are supposed to do. When you do a good deed for someone else, it gets returned to you one day—karma. I have heard of a few situations out there where people are trying to profit by offering MS patients paid services. I warn all of you, this is not what this is about, and if someone offers you this: DO NOT PAY THEM A CENT! Those of us with MS are not out to profit and if you are doing this to others, shame on you! Most people with MS just want to help others get Liberated, and it warms my heart when people email or call to thank me for the information I gave them. That’s my payback, to hear it in their voice, the sheer gratitude and hope they now have.

I found out this week there are 5 of us from Saskatchewan getting the Liberation procedure within a few days of each other, from July 10–15. I expect we will meet more Canadians once we get there too. So, I will let you know how we all are doing before and after.

I want to conclude this week’s blog, by saying I am sorry to those caring individuals who volunteer for our MS Societies across the world. I know the backbone of any non-profit organization is made possible because of the hard work the volunteers do. It’s the big wigs at the top of the National MS Society I have issues with. So please accept my apologies to all you hard working volunteers who help MS patients—you are irreplaceable!  

Have a great week,

Michelle

“FAITH IS WHEN YOU CLOSE YOUR EYES AND OPEN YOUR HEART” 

So I had to make a very important decision this week about my CCSVI treatment. I first heard from a doctor in USA (undisclosed as to where), and then 2 days later I heard back from Bulgaria. USA got me in at the end of August and Bulgaria, middle of July. Now, I know you are thinking just take the USA appointment because it is closer to home. But it’s not that simple. After a few days of weighing the options my husband and I decided that wherever was earliest for me to get it done was where we will travel to. So I booked our flight to Sofia, Bulgaria—and this is where I will be liberated! I will be creating my own blog page so you can follow me to Bulgaria! So please follow me on my Liberation in less than a month!

Bulgaria only accepts emails requesting to go on their waitlist email here: grozdinski@dir.bg. Dr Grozdinkski’s information below:

Prof. Lachezar Grozdinski, MD, PhD
Specialist in angiology

National Cardiology Hospital,

Clinic of vascular surgery and angiology

Tokuda hospital, Sofia, Bulgaria
Sofia, Bulgaria,
Phone 00359 2 997 89 18
Website: http://www.tokudabolnica.bg/en
Email: grozdinski@mail.bg
Has announced that he and his team will start accepting foreign patients starting April, 2010

Take a look at this youtube video...it’s about the hospital and doctors in Bulgaria; hopefully it will put any fears you may have to rest about the quality of the hospital etc.:
http://www.youtube.com/watch?v=f2DiMMNPnoo
I have spoken to a few Canadian patients that have just come back from Bulgaria and they have so much good to say about their whole experience there. Here are a few of the articles from Leduc, AB and Saskatoon, SK newspapers I was interviewed for last week

http://www.leducrep.com/ArticleDisplay.aspx?e=2617731

http://www.thestarphoenix.com/health/Woman+bids+liberation/3129899/story.html

CCSVI treatment: it started with a trickle and has turned into a tidal wave as over 1000 North Americans have been liberated since November 2009. More are going abroad within the next 6 months.

Read this article on this woman who is gravely suffering from MS complications—if our government and healthcare system don’t have the compassion to let her have the CCSVI procedure they will have blood on their hands!

 http://www.thebarrieexaminer.com/ArticleDisplay.aspx?e=2619856

God Speed,

Michelle
 

I have had a busy week with getting the word out on CCSVI in Saskatchewan and Alberta. I have talked on live radio shows in Saskatoon and had interviews with local newspapers. I find there aren’t enough hours in the day to spread the word.

Maybe when I was diagnosed years ago in the early stages of my disease and this new finding came out I would not be as active in getting this new treatment done on myself as I am now. But after 18 years of suffering, I have lost use of my right side, control of my bladder, lost muscle, balance, walking, and lost a tremendous amount of quality of life. I fully know how well the drugs/shots worked for me in my first 10 years of living with RRMS. It helped slow progression down for me and enabled me to still be active in my life and continue working as a Flight Attendant. But then it reared its ugly MS monster head and thus I am in a secondary progressive stage of MS.

Dr. Sandy MacDonald just went to the Subcommittee in Ottawa for our fight to have this vascular procedure available to MS patients in Canada again this week. He has been so awesome and a huge voice for us trying to get this in Canada. To get tested for CCSVI, Dr. MacDonald does not charge MS patients a dime! It’s out of his own pocket. Maybe that’s why he gets over 1000 requests a week. There were personal stories of two MS suffers who had the procedure done and paid for by Dr. MacDonald that spoke and told the committee in Ottawa (who from my understanding will decide if they will let this happen or not in Canada) on how their lives have changed since having their veins unblocked. Listening to the audio cast live this morning brought tears to my eyes—that is me and how I suffer on a daily basis.

Now, if you have done your research properly about CCSVI then you can “rightly” have an opinion as to whether or not you support this or not. If you aren’t fully aware, I challenge you to get on the internet especially Facebook and do your research so you have the facts to support your opinion. “Knowledge is power” my mother always said.

I love this quote from a fellow MS friend in the US, “these days we live in are medical history in the making. It is a time for Revelations to come round. The crippled will get up from their chairs and the lame will drop their canes and we will walk away from the pain! These are the days!"

I would like to conclude my blog this week by dedicating it to a special lady who was an online friend and fan of my blogs. To the memory of Bridget Fitzpatrick; may you rest in peace sweet lady. I know you were waiting for the day to be Liberated, but your poor body got too tired and the angels called you home instead. God Bless you Bridget, it was an honour to have met you, and may you rest in peace and not suffer anymore.

Until next week,

Michelle

I am very thankful for W5 and Avis Favaro for breaking this story wide open last November in Canada. This has honestly been the first time in my life since being diagnosed that I have hope. If you feel the same way and want to thank Avis Favaro send an email to: health@ctv.ca.

I am so thankful for Dr Paulo Zamboni for having the courage to think outside the box. I am also very thankful for the powerful tool of the “internet” and for fellow MS friends I have met online all over the world. We are a strong, united group that is NOT going away until we can all be Liberated!

I get frustrated when I hear of neuros/doctors saying statements like, “MS patients need to wait for us to do years and years of Scientific Research to see if CCSVI actually works or not.”  Yeah right! So I can sit here, have my MS get worse and maybe in 10 years you will have figured out what many MS patients already KNOW from being Liberated. I have seen before & after videos on the internet of MS Patients with RRMS and SPMS—it is truly unbelievable! I mean if it helps my MS not get worse and/or helps relieve some of my symptoms, then why in my right mind would I not at least try the Liberation Treatment? I have nothing to lose and everything to gain. I know its not a cure but probably a really good treatment.

I know the MS Society is now asking the government for 10 million more dollars to fund CCSVI research—and that is a good start, but realistically, it will still take years for us to be Liberated here in Canada. Dr. Sandy McDonald, cardiovascular surgeon from Barrie, Ontario is our biggest advocate for this—he recently spoke up for MS patients at the sub-committee at Canadian parliament concerning CCSVI. He also is testing MS patients at his cost right now, not ours. I see his radiologist in August for CCSVI testing and I want to thank him for all he has done and continues to do for us all.

 Finally someone has enough guts to write this. Gotta love the freedom of speech in Canada!

http://canadafreepress.com/index.php/article/22838

Please read my friend Val’s newly update blogs, where she lists specifically her improvements:

http://vhoenecke.blogspot.com

There are also many with SPMS getting Liberated abroad and seeing dramatic results; so if you have SPMS or PPMS, don't buy into that it only works for RRMS because that is not true!

Listen to this man's story

http://www.cbc.ca/informationmorningns/2010/05/finding-liberation-in-poland.html



Take care and have a good week

Michelle
 

This week my friend Val travels to Katowice, Poland to have the Liberation Treatment done. She sounds so excited and anxious to get this done and I am so excited for her too! She said she was packing her laptop her husband bought her so I am going to check my email often and await the good news that all went well. I am so happy they have allowed airplanes to take off to Europe, because last week she would not have been able to go due to the volcanic eruptions in Iceland. God works in mysterious ways doesn’t he?

This week I had a message from my reverend. The church decided they want to do everything they can to help me go to Poland. Then, I went to town the next day and posters have gone up asking people for donations to help me pay to get this done. I am so honoured and proud to come from such a loving and giving community that cares about me and my family so much! They want to help us with the cost of the treatment since it is around $11,000 CAD (6900 Euros) for the actual procedure. I apologize the site for Poland I gave you last week was all in Polish; so if you can’t read Polish, please read the email I received:
Thank you for your interest in our CCSVI program. To register and take your  place in the line of our patients, please send an e-mail to us with “REGISTRATION” in title and with the following information: 
 Name, Last Name, Country/City, telephone number and email.
 After registration process, we will inform you about the details of your CCSVI/MS treatment.
 The first spots available on the waiting list are in 2011.
 For more information please visit: www.euromedicpoland.com and Facebook (look for Euromedic Poland)
Our email address is info@euromedicpoland.com


Also, if you want to join my Facebook Group, I have created a page about my journey to be Liberated— please search for the name “Michelle’s Journey to be Liberated”, and I also have a Group called “LIVING WITH MS AS A WOMAN”.

And last! Did you read one of the latest Maclean’s magazines on CCSVI and Dr. Mark Godley from Vancouver? Go out and get it, it’s a really exciting possibility for Canada and CCSVI!

Have a good week,
Michelle

A long time ago someone said: “if it’s too good to be true, than it probably is”. That is how I feel after attending the MS information session about the future CCSVI Clinical Trials in Saskatoon. Dr Katherine Knox, a neurologist from Saskatoon is heading up a clinical trial with 100 patients this summer on the theories of Dr. Zamboni’s findings. I guess a small part of me was hoping this would all move faster than it is and that Dr. Zamboni’s theories were concrete so I could pay to go get this done abroad and have some quality of life back. But the reality is, it will take years to see if Dr. Zamboni’s theories are possible and even doable—there are so many factors to consider in the big picture. I know everything takes time, but I am still disappointed.

I learned from the specialists and surgeons at this conference that it isn’t in our best interest to go abroad and get this procedure done right now, because it’s a very risky and invasive procedure to unblock veins and try to keep them open. Maybe a few years down the road there will be more concrete information for a treatment or cure for us MS suffers, but not anytime soon.

I felt like a balloon that had been deflated and am not very hopeful right now with all this CCSVI buzz. I’m sorry, I couldn’t write more positively, but frankly I don’t want to blow sunshine up your butts when that’s not how it is. So again, it’s hurry up and wait and raise more money to see if they can figure out if the Zamboni theory is legitimate.

Is it too much to ask for a cure?

Take care,

Frustrated Michelle
 

So I heard back from the doctor in Poland—here’s a quote from the email:

“We are informing that you have entered our waiting list for 2011. Doctors’ schedule is fully booked for 2010. We also kindly ask for your patience—we will contact you in due time. Thank you very much for your understanding. For more information, visit our website www.euromedicpoland.com”
 

This news does not surprise me in the slightest. Yes, I am disappointed to be on yet another long waiting list, but it is what it is.

My darn right hand is still not working, but it really amazes me how well my left hand adapts. I think I have pretty much mastered brushing my teeth and combing my hair with my opposite hand; but I still have yet to accomplish putting make-up on. I don’t wear much make up anymore anyways, which is good because the times I have tried doing this, it’s not that pretty! LOL.

I guess at this stage of the game all I can do is wait patiently to hear back what the doctors find out from their clinical trials all over the world.

Have a good week. :)

Michelle

Have you been taking in the Olympic coverage the past few weeks? It’s awesome to watch our Canadian athletes and see them do so well, whether they win a medal or not. It has taken them a lot of hard work and training to get to these games. I watch the figure skating and think back to my youth years when I could figure skate. I would trade anything to be physically active again. It takes all I have energy-wise to brush my teeth, get dressed and have a shower some days. I live vicariously through others and remember back to the good old days.

If you are still very active and have MS, good for you, keep it up! Please don’t think everyone with MS becomes physically challenged. There are so many situations with MS that each one of us has a different story. Lots of people I know with MS don’t suffer any physical challenges through their lifetime.

Take care and God bless you,

Michelle

P.S. I still have very sore hands, so I apologize for my short blog again. :)
 

I have been on a waiting list for over a year now to get estimates on renovations for our home. We live in a very rural area and there aren’t very many choices of contractors around here who do renos. Plus, this past year the Home Renovation Tax Credit made people do more renos than they would normally do, so most of the contractors are busy. So, here I am still waiting for a quote –I really need to get my bathroom done so I can have handicap accessible items. I get so frustrated sometimes about the fact that I need to get these special renos done; but then I remember I could have it a lot worse. In reality, I’m thankful I can still function at home. But, I sure wish there were more talented people around here that could do home renovations.

Is there any way I can just close my eyes and wish for the Reno Fairy to swoop down and do these up in a flash? I can always dream, right?

Regards,

Michelle

Last week I was blogging about some good basic strategies to think about, just after you get diagnosed with MS. This week I want to touch upon psychosocial principles; like having common sense while decision-making, being happy with yourself, living in a supportive home environment, gaining control of your fears and daily anxieties, as well as trying not compare yourself with others, having a hobby or source of contentment and pride, enjoying music, books and animals. Plus, I think it’s really important to maintain your friendships/fellowship with family and others. For me, it’s so important not to get stressed out, as stress can very well set off a relapse.

When I was first diagnosed with MS, I was referred to a psychologist who specialized in helping MS patients and I found this very beneficial. I still see her once a year. I went through so many emotions after being diagnosed and needed her help in coping and working through these emotions. I know you might not be able to find a psychologist who specializes in dealing with MS specifically, but maybe you can find one who talks to others who have other debilitating diseases; they might have some good advice for you. For me, seeing a professional to talk about my condition was and is such an important step in learning to deal with MS—it truly was a lifesaver; especially because talking with friends and family can be difficult. Someone who doesn’t know you personally could really help give you a fresh perspective.

Next week, I’ll be blogging about medical management.

Take care,

Michelle

Today I find myself remembering back 19 years. I was diagnosed 19 years ago and sometimes to me it feels like it was just yesterday. I experience all the same emotions when I think back and remember how scared and angry I was leaving my neurologist’s office that day. If you are newly diagnosed then I know you can relate to what I am saying here. I remember my first impression was thinking, “will I end up in a wheelchair or blind like the people I have seen who have MS?” I was only exposed to people who had bad cases of MS and I would picture the worst case scenario for me. It took me many years to accept I had MS, because I was fine except for my fatigue. Everyone who cared about me wanted me to go to MS support groups, but I wasn’t ready in the beginning.

If you are newly diagnosed it is perfectly normal to not want to talk about it or go to support groups—you’ll do this when you are ready. Back then, I remember my neurologist saying to me I still have to live my life and follow my dreams even though I have MS. And to this day, I do the things I want to do and have no regrets for the choices I have made because they have made me the strong person I am today.

Come back next week as I continue my blog about when I was first diagnosed and share advice with those who are newly diagnosed.

Regards,

Michelle
 

My 2 ½ year old son said something to me today that broke my heart. I asked him to hold my hand and help me walk down our hallway; he usually has no problem with this, but today he did. He snapped back: “no mommy, I hate you when you’re sick! I don’t like you!” I know he is just trying to express in the best way he knows how to, but it made me cry. I had to sneak off into my bedroom by myself and have a cry so he didn’t see me so upset. It hurts me to see the pain in his eyes that this MS monster causes him. He is just so young and doesn’t understand that mommy won’t get better tomorrow and this is not an illness that will go away.

I wiped my tears off and went back out to the living room where my son was playing. I sat down and asked him if we could talk. I explained to him how it makes mommy very frustrated as well when she does not feel well. I asked him if this makes him mad. He said yes. I told him it’s okay to feel like that. I reached out and gave him a big hug. I told him no matter how sick mommy may feel, I will always love him very much and he replied in his little voice: “I love you too mommy, to the moon and back.”

Have a good day :)

Michelle
 

Well, this has been a week from hell for my household. First, my husband who is NEVER sick gets really ill and had to be rushed to the hospital. Ends up he got a bacterial infection from something he ate. Then, he gets home and the next day I fall really ill and landed in hospital with a bad viral flu. Our young son also got sick from what I had, but he bounced back pretty quickly. It’s a good thing young ones are so resilient.

So here we are, all at home again and on the mend. You’re probably wondering: did you have your H1N1 shot? Actually, I was asked this numerous times by the nurses and doctors in the hospital, and the answer is: yes, I had both the H1N1 and seasonal flu shot and I still got a bug from who knows where. Thankfully, I am bouncing back from the crazy events last week and taking all my vitamins and supplements, so I don’t catch any other bugs and can enjoy the holidays!

Merry Christmas to you all!

God Bless,

Michelle
 

Wow! I can’t believe how much buzz these new findings from the Italian doctor have stirred up! In Canada we have the highest rate of MS per capita. So I would hope Canadian neurologists and researchers are going to jump all over this and start looking into this new theory. I took part in an online chat that the Globe and Mail put on this past week and they were overwhelmed by the great response from so many MS patients across Canada. One person during this chat was saying, since the W5 program aired last Saturday, many neurologists have been asking for more information. Also, the MS Society of Canada is now requesting researchers to submit proposals for funding for exploring this new theory. This is a HUGE step for those of us suffering here in Canada. I want to share a very important statement made from Yves Savoie, the president and CEO of the MS Society of Canada:

"To people with MS we say: don't abandon the course of treatment that you have started. Those treatments have been proven in large trials to be effective in reducing the burden of disability that comes with MS."

Please take this statement to heart as I know how well these therapies worked for me in slowing down the disability in my MS. I’m extremely excited to know that maybe down the road, we can see a new way to manage our MS and maybe ditch these nasty symptoms that go along with having this chronic illness.

Thanks for reading my blog and God bless,

Michelle
 

How can I not blog about the new findings in Italy?! For those of you who haven’t heard, Dr. Paolo Zamboni, a vascular surgeon in Italy has discovered that a narrowing or blockage of the primary veins draining blood from the brain to the heart, restricts the normal outflow of blood from the brain. As a result, the blood often flows backwards into the brain. Some think the resulting flow and building pressure pushes blood into the tissue around vessels in the brain, resulting in toxic iron deposits that some believe may trigger inflammation, injury to brain tissue and cell death. Could this Italian doctor be onto something, or is it too good to be true? I personally would sign up to test this procedure. Heck why not? I was just daydreaming today…wouldn’t it be nice to walk again, to have my balance back, to be rid of chronic fatigue, to be able to play and run with my children, to not have to catheterize my bladder? What would it be like to have my quality of life back and ditch this cane, walker and wheelchair?

“Dream the impossible dreams”

Take care and Godspeed,

Michelle
 

Today I thought about what my world would be like if I didn’t have MS. Of course very different to say the least, and I have to be honest I am not that glad I have MS; but when you get lemons you try to make lemonade right?

MS taught me at the young age of 18 some very tough life lessons. The first lesson I had to endure was to really listen to my body. When I was tired, it meant my body was saying “slow down” or else I was going to pay for it later. The second was to eat healthy and try to limit my alcohol intake. I’ll be honest; I tested that to the fullest—I was at the prime age for going to nightclubs. But once the dust settled, I realized I needed to try to take better care of myself. Now, I know how important it is to eat healthy, get the proper rest, exercise, and maintain a positive attitude. I know I can’t control my MS—but doing what I can to control it gives me a sense of power back that I lost the day I was diagnosed.
 

Today, I am struggling to keep my energy level high enough to get through the day. I think lately it has to do with my 8 month old daughter still waking me up several times during the night. I haven’t slept a night without interruption since she was born. I know the average mom would say, “big deal, that’s motherhood,” but when you have MS it’s very, very challenging. It is such a change for me, because my son was such a content baby and slept through the night; I was very lucky with him. I never make my husband get up during the night because he works so hard all day to provide for us. We are still trying to get our harvest done. Our combine shut down for three weeks due to poor weather, but we have since been back at it in the last two days. Let’s hope Mother Nature can keep this sunshine here for the next week, so we can finish with the harvest and be less stressed!

Furthermore, I have been having troubles with my right leg for awhile now. I call it my “union leg” because it’s on strike (haha). But seriously, it makes it so hard to get around some days when it’s not working. I have had peritoneal nerve damage and foot-drop for over a year now. I feel very frustrated and wish I didn’t have such a useless leg. I try to pull myself from this type of thinking; it does me no good and brings me down. Whenever I catch myself thinking negatively, I remember that I could have it a lot worse. My mom always said, “take it one day at a time;” and that’s what I strive to do.

Michelle
 

I really wanted to be able to help others with MS because, when I was diagnosed 18 years ago, there was no support out there like this wonderful website. So, I hope you enjoy my first blog and come back often to read more. To start, let me give you a bit of insight on how I was first diagnosed with MS.

It began when I was at college. One day, I started to uncontrollably drop things and then experienced severe numbness and tingling sensations in both of my legs. I knew this wasn’t right, so I went to the hospital, but the doctors kept telling me “it’s all in your head, the stress from your exams is causing this.” But, one day I woke up feeling worse than ever and I knew there was something seriously wrong with me. I called my doctor back home and drove two hours to see him. He referred me to a neurologist the next day. The neurologist told me in that first appointment, he was pretty sure I had multiple sclerosis. I was pretty angry and upset—how could he know I have this critical illness when he hasn’t taken blood or spinal fluid? But as it turned out, he was right—and 18 years later, he’s still my neurologist. I still remember the wheel of emotions I experienced when I was diagnosed: grief and sadness, then anger, then denial, and finally some sort of acceptance. I think we probably all go through all these emotions back and forth. You’re not alone!

I think the biggest challenge now being a young mother with two young children is the chronic fatigue. Some days I can barely get what needs to be done, done. So any extra energy for the kids is not an option some days. I feel guilty when these days arise, but on the days where I do have more energy, I seize those moments and live them to the fullest. Someone told me a long time ago, when I was first diagnosed, to learn to prioritize what needs to be done depending on how you are feeling that day. This was such good advice and now I want to pass it on to all of you. Depending on how you feel after waking up in the morning, figure out what is a necessity today and what can simply wait for tomorrow. Does the world stop turning because you didn’t get the dusting or laundry done?

When Thanksgiving came this year, I put a lot of thought into the things I’m thankful for: I have a loving and caring husband who loves me unconditionally, I have two healthy, beautiful children who are growing every day, and I have a roof over my head.

When you’re feeling down and wondering, “why me?” just remember: we may have MS, but MS doesn’t have us, nor will it define who we are. Thank you for reading my blog and stay tuned for more.

Have a great day.

Michelle