Wednesday, May 26, 2010

Too Busy to Post!

Hi Everyone,

It's been a while but the news is still good. I am feeling stronger everyday. Today I am in Regina, Sk. I arrived last night to support a CCSVI Saskatchewan meet and greet. I get there after a difficult time leaving my home. My article went into the Crossroads newspaper on Friday (21st) and I have been getting a ton of calls from people wanting liberation. I really enjoy helping people and I can only hope that more people will be able to feel as well as I do now. Teal came to Regina with me which makes the trip a lot more fun. We arrived just in time at the mall for things to get underway with CCSVI Saskatchewan. Silly me wasn't expecting cameras there but I was interviewed, not looking my best I might add. This morning (very early) we had to go to CBC to be interviewed with Ted on the morning edition. I got Teal out of bed at 6 and we went to Tims to get her a muffin and me some coffee. At CBC the interview was short but impressive. I will put some sites here where you can go. I went here to download the podcast of my radio interview . Iwas also on the late night news and the site for this is . Hope all is well with everyone. I have enjoyed meeting so many new MS friends. I have a bond with all. In sickness we bond and in wellness we conquer.

Friday, May 7, 2010

What has changed?

1) I have no pain. The right side of my body from the back of my head down to my feet suffered severe pain.

2) No pressure in my neck. That had been my major complaint to my neurologist was incredible pressure in my neck. Up to and post diagnosis in January 2009 I would tell my neurologist that I did not have headaches but I had incredible pressure in my neck starting at the base of my skull in the back of my head and wrapping around the front. I told her this three times and in my June 2009 appointment she got very angry with me telling me that those symptoms had nothing to do with MS and to quit telling her about them. Looking back afterwatching W5 I figure she knew about the theory and thought I did too and was fishing for her ideas. I did not know anything until W5 aired.

3) I feel the right side of my body. I can type much better now that I can feel my right hand. It always felt like I was manipulating someone else's hand to type. My mistakes are getting less and less but I do notice that my right hand is going faster now which sometimes makes me have errors.

4) I can swallow properly and I do not feel a lump in my throat on the right side.

5) My bladder eliminates properly.

6) I do not have drop foot. I used to have to make a conscious effort to make sure my right leg was lifted enough so I did not trip. Many times I would fall going up the stairs because my foot was not lifted enough.

7) I have no fatigue, actually I have tons of energy. Last year I started to take a stimmulant called Modafinil which is prescribed for people with narcolepsy. Before taking this drug I would begin sleeping in the early afternoon and often not be able to get up until the next morning. I have not taken the drug since the day before my treatment. When I arrived home Tuesday night (4th) I had been awake for 24 hours which is unheard of with people suffering from MS.

8) I have colour in my face. I used to look grey and I wore a lot of makeup which you really couldn't tell. A lot of people in town have said to me oh, I see you are wearing makeup. When I tell them I always wore makeup actually more than I am now they are shocked. CTV news Saskatchewan interviewed me the day after I came home (Wed) and after watching the news that evening my husband said, "You might think I am crazy but your eyes have more colour. You look like you are wearing coloured contacts". He then said that he looks back now and said my eyes were green when we got married but had changed over the years to a grey colour. That is probably the most Wow moment I have had and there have been many since I have returned.

9) I am happy. Many times we with MS are branded as depressed but I never thought that I was. I knew that I was terribly sick and that may make a person seem depressed. I have to be honest that I haven't been this happy for 20-30 years. I am in shock everyday at how well I feel.

10) I lost about 10 pounds of fluid. There was definitely something causing fluid build up in my body. It took nothing to lose weight and size. I really think that was the pressure I felt all over my body.

Hope that explains how I am feeling and I think that each day I am discovering something new that's better. Some of these things I had no idea had anything to do with my MS before. I live in wonder everyday and I am so happy I just wish everyone with MS could feel like this. I never dreamed it would be this good before I went, my goals were realistic what I wanted was the stop to progression of the disease, less fatigue and less pain. What I got was unthinkable for me. I am in shock still.

Thursday, May 6, 2010

Here is for Avis

Hi all,
I sent a letter to Avis Favaro of CTV W5 today. A good friend of mine Michelle Walsh suggested I share it with you.

Hello Ms Favaro,

I am Val Hoenecke and I was recently liberated in Poland (April 28, 2010). It all started with a show I watched in November, little did I know then that in 5 short months my MS symptoms would be gone. When I was diagnosed I thought I was done for and there was no hope. I watched my dad die a horrible death from this disease and I was living in hope that it wouldn't hit me that bad until my children were grown. I watched you on W5 with Dr. Zamboni and looking back now I can't believe this journey. I have hope, I feel amazing, I forget what it is like to be sick. Everyday I discover new and amazing things.

I wanted you to know that many people ask me how I arrived where I am today. I say that there are a few things that saved my life:
1) W5 and Avis Favaro for bringing this story to Canada
2)Dr. Zamboni for having the courage to think outside the box.
3)The Internet
4)Poland Euromedic
5)My dad and the angels that gave me the strength and courage to do what I did.

I have been saying your name for months now in my thanks and I wanted you to know the impact you have made on me. If I had the power to make you a patron Saint I would. I name you in my prayers and I have nothing but good to say about you to anyone that will listen to me.

God Bless you Avis Favaro, you are my hero.

Val Hoenecke

I'm Home

What a great feeling to walk into your house and have your family waiting for you. This time was so much more special because I felt like I had a chance a being here for quite some time and being able to enjoy my life. After another trans-Atlantic flight I made it home on May 4th at 9 pm. Jim picked me up at the airport and brought me straight home to Tavia, Teal, Mom, and Emma of course. I had been awake for a good 24 hours by this time but I stayed up a little longer to show everyone my souveniers. May 5th brought a new day in Canada and a phone call from CTV news. They said they would be leaving right away and coming to interview me and I said "really?' I have to admit I was still pretty jetlagged but I struggled through anyways. After Mike Ciona left I was worried what they would put on the segment but did they ever do a good job. I asked for a copy so I could put it on Facebook and my Blog.

I thought I would use this blog to let everyone know what my family is noticing upon my return. The first night I was so tired making it difficult to tell anything. Jim noticed right away that the fluid build up on my body was gone. He thought my face was a lot thinner, this couldn't be because of a diet because I ate like a pig in Poland. Everyone noticed I wasn't so tired. Last night Jim said that my colour is much better and that he thinks my eyes have more colour in them. My mom agreed realizing that she had noticed something different there too. Jim said that I probably have had dull colour (grey) for a lot of years, possibly 20 or more. The small things that will be changing in the next while are really big for me. I always noticed the progression of my disease and now I am so happy to be able to notice improvements. It is almost sureal for me, I feel like I will wake up and all of this was a dream. I wished for improvements or at the very least no more progression of my disease. I never would have wished for what I have received so far, I thought it would be impossible. What have I learned from my experience:

  1. Prayer works
  2. Dream Big
  3. Family is everything
  4. You can buy health
  5. Believe in yourself

I have nothing but good to say about the country of Poland and their health care system. I don't have much good to say about ours. I have to say that there are good people in the system though. Dr. Ernst has been very supportive of me throughout my MS journey. I will do everything in my power to get the tides to change and the people with MS treated here. I now know my purpose in life. Before I thought I was destined for suffering, now I am a crusader.

Monday, May 3, 2010

Last Day

I must pay a special thanks to Warren for coming to Poland with me. It was so good having a seasoned traveller along on this tough journey. He was able to meet and fall in love with a beautiful country. We have some great memories of our trip and we hope the volcano just holds the plume for 1 more day. Will let you know when we arrive in Canada. Until then, thanks for following and I hope to see many of you soon.

Happy and Sad

Not sad about very much only that I am leaving tomorrow. Weird but I am also happy that I am leaving Poland tomorrow. At 2 am Saskatchewan time I will board my plane for Frankfurt, I can only hope I then make the connection to Calgary, then Saskatoon. If I don't make it I will probably have to cool my heels in Frankfurt. I have heard great stories from my brother Warren this trip about the European countries. From what I saw of Germany they enjoy order. They also enjoy power when they are accepting your passport. Warren was ready to have a cigarette and we waited for ever in a line, it seemed they enjoyed making us wait and watch out if someone of colour was at the wicket. Warren said that in Hell the cops are Germans, the cooks British, and the Italians run the train system. We had a good laugh at that.
I miss my family very much but I also love this city of Krakow very much. I have never seen anyplace so clean. They even have Disney beat. The food is amazing, we haven't had a bad meal yet and I must say that tonight's supper was the best. We went to this little Italian place in the old town. You could see right into the kitchen with an old pizza oven. There was one cook and he was fantastic. I had Lasagne and Warren had Caniloni. Wow, both meals were great. It was the real deal. I always trust places where I can watch the cook in the kitchen, there is a level of trust. We walked a ton today and Warren is very tired. I am not too bad even though I have not taken my stimmulant since the day before my surgery April 27th. I stormed the Wawel Castle today, what an amazing place. We could not do the tour of the castle but we saw the cathedral where all the kings were burried. It was very interesting, we rented headphones and they acted as a tour guide would but you could hear them. I think the president must be burried in the castle part. We learned a lot of Polish history then went back to the hotel for a rest. We hopped the tram again and went down for our wonderful supper. I will have to pack but I find it so much easier packing from a hotel room vs home because you don't have to think you just have to take everything.
Seeing my family will be very exciting for me. I don't think my kids have ever known me well. I am not saying I am cured but I will say I have no MS symptoms. If you did an MRI of my brain tomorrow there would still be lesions there but I won't guarntee they will be there next year. I owe a debt of gratitude to many people for making it easy for me to hop a plane across the Atlantic. To Jim for encouraging and financing the trip. For Tavia and Teal for being excited for me. To my mom for coming and helping at our place. To Cliff for visiting and breaking up my absense. To Kent Carlson for taking my position at work alowing me the confidence to leave. For the Long family for looking after my little Emma which took a great deal of stress off my family. To Kim Wisse for helping Teal at the recital. To all the people that made it easy on my family during my absense. I owe you all a deep gratitude and it may not seem like much to you but it is really big to me. God bless you all and thanks so much. Will see you soon. The new but actually old me. The way I was before my MS symptoms got out of control.

It's Going to Get Ugly!

Here is a great article by Dr. Ashton Embry explaining why it is going to get ugly with regards to this treatment becoming available. http://
He does a great job explaining both sides and it boils down to the MS Society and Neurologists having everything to lose having us treated and we MSers have everything to gain by getting treatment. Who will win in the end? Hopefully us but it will get ugly. The MS Society and Neuros first of all do not realize the power of the Internet and the intelligence of many MSers. We are not the idiots they think we are. Upon my return I will look into educating the people of Canada and doing something with regards to the MS Society to bring them down. I am only one small person in Canada but I carry a big stick. I have family and friends aflicted with this terrible disease and it needs to stop.

If you are a tax payer and concerned it will cost too much for this treatment we must look at the math. Each year the tax payers of Saskatchewan pay 14 000 dollars towards my Copaxone, there is a different drug (LDN) which is a fraction of the price and not offered by the neuros. Why? They get kick backs from the drug companies for prescribing the MS drugs. The taxpayers also pay for my neuro appointments, I am sure they are not cheap. If I was to go down hill there will be the cost of home care and eventually I would be a young woman in a nursing home possibly on life support. What would the cost of that be? You the taxpayers are getting ripped off badly. There is a huge market for us to be ill and they (Neuros, MS Society) will do everything in their power to keep is that way. Now that I don't feel the devastating symptoms of MS I am very angry. You tax payers should be just as angry. I will ask that you no longer give the MS Society any funds and I will be doing anything possible to get those funds you have already given in the name of MS out of there. I will be looking into what I and my MSers can do legally as they are no longer representing what they say they do. The CEO of the MS Society in Canada makes over 450 000 dollars a year as well as benefits. If they have an anual meeting it would be held at a place like the Banff Springs hotel. It is time my friends to stop this nonsense and I will do anything in my power to do so.

Now for a positive note, I am going to tour Krakow today. It is a major national holiday to do with their constitution. Euromedic sent me a message stating that today is a holiday and gave me the wiki information on it. All of the trams and businesses have the Polish(Polsky) flag out and it is really a big deal. I cannot wait to go into the Wawel (pronounced Vavel) castle and cathedral. Unbelievable churches and cathedrals here, I can see why communism did not work here these people are very religious. I am very excited to be home but I could use another few days here. Glad I added the extra days for after the procedure when I feel well. It is hard to believe but I am forgetting what it felt like to have MS symptoms. I never thought it would be possible to forget. I also agree with the statement that you don't know how sick you are until you feel better. I am living proof that this procedure is what needs to be done and I am not a quiet reserved person that will let this go. If you have MS or know someone that does please get treatment. I can't say this statement enough.

Sunday, May 2, 2010

How to Save Money in Poland

Travel during a national-holiday weekend is a way to save money. May 1 and 3 are both national holidays. With Sunday being between those dates there has been little open here. I did manage to find some things but it wasn't easy. What a great day we had in Krakow, Poland. Found on my MS Forum some great advice that I thought I would share with you on who to call if you have trouble. My GP wrote me a letter of referral and I will use that to claim my trip with Revenue Canada. I will be looking for a vascular surgeon when I return to Canada. Hope they aren't jerks like most neurologists.
Today we began our day like the others with a total pig out breakfast. We decided to travel like the locals do and head on a tram. For 2.50 Zloty you can ride a tram. We went to a massive mall like the West Ed and decided that it would be like North America so we went to Old town. What a great place. There was a cathedral there called St. Mary's, we had a hard time keeping our mouths open when we went inside. The building didn't look like much from the outside but holy cow on the inside it was crazy. We decided there was enought gold in their to solve all of Haiti's problems. There were so many alters that a person didn't know where to turn. We toure around that area for a bit then came back the the hotel for a rest. We set off towards Wawel Casle later on and they have a ton of churches/cathedrals in a 2 block radius. We didn't go in all of them as we are saving some time for tomorrow. There was also a monument for "Katyn", the murder of the 22 000 military elite by the Russians in the 30s. I wanted to see if the cathedral and castle would be open tomorrow. What amazed me is I climbed a huge ramp/stairs going up to the cathedral and castle. This cathedral was where Pope John Paul II was the archbishop. We are going to this castle tomorrow. I was so impressed MS wise that I could climb this huge set of stairs. I left Warren at the bottom and boogied on up. Before I had the liberation I wouldn't have been able to do that, only in my dreams. After Wawel we went for supper at a quaint Russian restaurant. The food was great and it was so nicely decorated. I am back in my room now just after 8, I am getting things organized for my trip back home on Tuesday. I am going to mail some of my clothes back to myself because my bag will be too heavy. Good thing I couldn't buy too many sourveniers as I have no room. Hope all is well with everyone, it is sure great here. What a beautiful country and people. Poland is my new favourite place. With all of the churches here and saints it is no wonder that I experienced a miracle in Poland. I had forgotten my camera and duckie today so I will go back tomorrow to take some pics. Will keep you posted and hope all is well with everyone.

Saturday, May 1, 2010


Hi again, we arrived in Krakow today to spend three nights here before flying back to Canada. We decided to take the train instead of getting a driver to bring us to Krakow. I decided that we would stay at the same hotel chain the Qubus as we did in Katowice. This hotel is very luxurious and nice. I seem to be more tired today probably because we travelled. I have to keep in mind that I just had vascular surgery 3 days ago. I am still off my modafinil and look forward to going back to Canada and going off Copaxone. I will start a different drug LDN which is generic and hardly costs a thing. The savings on these drugs alone will be over 300/month. It won't take long to pay for my trip to Poland. Maybe this is the reason everyone is fighting getting us liberated, there are billions to be made off of us. The taxpayers of Saskatchewan alone pay 14 000 dollars a year for my Copaxone prescription. I am sure it would be cheaper for us MSers to be liberated at home and taken off these silly drugs that do nothing or kill us. I can't wait to watch the W5 program when I get home they always do such a good job keeping us informed. I need to do some touristy type shopping the next two days and do some touring. I look forward to getting home to my family and friends. Can't wait for that wonderful jet lag feeling. TTYL