Sunday, November 21, 2010
I am so glad that many of my special MS friends have received the procedure. As with anything in life there are those that have success and there will be some that don't have the results. My heart goes out to those that did not have the success with the surgery. I just really wanted everyone to get better and of course it didn't happen that way. We all deserve the chance for this surgery and our doctors and country have turned their backs on us. No one is more to blame for this than the MS Society of Canada. They have been the most at fault for telling doctors and the government to make sure this surgery does not happen. I find instead of bad mouthing them I spread the word to donate elsewhere. When charities phone for donations from me I explain that I had to spend 14 000 dollars for my own illness that the Society that signed up to help me has blocked. I say to call the MS Society and express that they would like to know why the MS Society has turned its back on the very people it is supposed to help. Of course they wouldn't but it made me feel a little better. My charity had to stay at home as that was a lot of money.
I just want to say that this has been one great year and I have everything to be thankful for. Now we need to spend our energies into making sure there can at the very least be follow-up care for us in Canada.
Wednesday, August 18, 2010
What's been happening since my last post? I have been on the phone a lot helping those wanting to go to get CCSVI treatment. June was quite busy on the phone and wrapping up my daughters' piano and singing lessons. On July 2nd I travelled to Toronto to meet with the founding members of the group Angioplasty For All. This group is going to challenge the Charter of Rights Section 15. There is a lawyer that they are hiring and hopefully they will win the case, if one province wins then the rest will follow. This is huge and they will be looking for your help. Instead of donating to the MS Society sending money to Angioplasty For All will do more help for an MS patient than the Society will. If you would like information on how to send to our newly formed corporation please message me and I will send you the information email@example.com. I did not get a chance to see much of Toronto but enjoyed the company of MS friends. I was so fortunate to meet the husband of Barb Farrell and so many others.
July 18 was camping with my family for 2 weeks, this is where I noticed how much better I am. I was able to actually camp. In the past I would lay in bed most of the time in the air conditioned trailer while my family spent time at the beach or tubing with the Sea doo. My husband Jim bought a boat because he really wanted me to be able to join in on the activities with the girls. I was able to be up all day and spend time out in the hot sun, before I would get disabled in the heat. I Was in the boat for 3 hours at a time having a lot of fun, no more sleeping all the time for me. We spent the 2 weeks at Jackfish Lake north of Northbattleford. What a lot of fun we had together. It was no longer a chore for me to go camping. We returned on August 1st and Jim went to be busy on his farm, not sure where this month has gone but we seem to be busy. On the 7th we travelled to Yorkton to attend my cousin's 40th birthday. While there I noticed another difference, when visiting with my cousins before I was not able to spend the evening time with them, I would have to go to bed. I was able to stay up past 1 am., something unheard of in the last 5 years. I could basically do nothing before, now I was able to interact with my family. I don't think I am getting any better just that I am noticing more things as I do them. On our way home from Yorkton we went a bit out of our way to stop in Wadena to visit a lady named Elsie in a special care home. Her granddaughter really wants her to have the surgery but I don't think that Elsie can make a trip too far. This is the reason we need this done here and we need it now. Don't wait 5 years for those doctors to run this trial into the ground. They don't want a vascular condition to be anything to do with MS. Neurologists have the biggest egos of any doctors and they will not allow MS to go to the vascular surgeons. This is a turf war that will likely not end in our favour. There are however too many people like me coming back with great results. I hope that these doctors fighting with the Zamboni theory will someday themselves get MS or have a loved one with MS. Let's see if they would like to wait the 10 years for science to say whether the proven procedure of angioplasty would be good for MS patients. What the heck kind of morons do they think we are? Please do not insult my intelligence by saying this effect I am having post surgery is a placebo effect. I don't think that I wanted to be in bed most of the day before suffering from fatigue and pain, I am sure I wanted to be up living with my family.
August 12th I ventured to Saskatoon to have an appointment with a neuro physiotherapist. This appointment lasted an hour and she was quite thrilled at meeting someone that has had the surgery. I only wish she would have seen me before and been able to compare the before and after results. I noticed that my hamstring muscle on the right side has a ton more movement. At my previous physio I could hardly move my leg up but she was able to move it to 70 degrees off the table. I told her that was a huge difference. We were able to discover what MS has wrecked in my body. I pretty much have no muscles in my right side from my knee up to my chest. Hopefully after she has completed my assessment I will be able to have a routine that will help to rebuild that side of my body. I can't expect to get back to "normal" but I would like to be as strong as I possibly can. I will recommend those people coming back after surgery to get into see a physiotherapist that will help to rebuild their lost muscles. My MS symptoms have stopped getting worse so now my body has a change to get better. No more progression of disease gives my body a chance to recover.
I will be going back to work part time as my doctor does not think that I should jump into full time work. After having vascular surgery it is important to build up strength something that I will be able to do with my therapist. My goal is to return to work full time in the 2011/2012 school year. That is something that I never thought would happen, before my surgery I wasn't going to be going back to work at all. I was going to apply for permanent disablility but now I am working towards full time. I am changing my mindset for what I thought was going to happen in my life. Home care and nursing homes are not part of my plan anymore. There is a God and he gave me a miracle.
Wednesday, May 26, 2010
Friday, May 7, 2010
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
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.
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.
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:
- Prayer works
- Dream Big
- Family is everything
- You can buy health
- 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
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
Saturday, May 1, 2010
Friday, April 30, 2010
I realized yesterday that my old habbit of drinking coffee in the evening has to stop. I couldn't get to sleep before 2 am and then I got up a little after 5 feeling "slept out". I went the whole day again without my stimmulant which is amazing for me. I am still awake at 10:30 pm and feel very alert. I am sure I will be able to sleep by midnight tonight as I did not intake any caffeinne this evening.
Tomorrow we will get a ride to Krakow (about 80 km away) and spend 3 days at the Qubus Hotel in Krakow Poland. On Tuesday we travel, leaving Poland at 10 am and arrive in Saskatoon at 7 pm. That will be 3 am Poland time. The trip here was long but I hope the one home does not have delays. Look forward to seeing everyone when i return and will try to keep posting updates as to my progress. I am doing amazingly well for someone that just had vascular surgery 2 days ago. Good night all and will talk to you again from Krakow Poland.
Thursday, April 29, 2010
Tuesday, April 27, 2010
The ability to talk to anyone is a trait that I have proudly learned from my dad. When I was a young teenager I would be embarrassed at how he would talk to people he didn't know. I do this same thing which I know makes my own children shake their heads in embarrassment. I must admit that the ability to engage in conversation with anyone is a trait I proudly take from my dad.
I know that my dad is with me on my journey here. I feel such a calmness and that I am doing the right thing. All of the signs have pointed me in this direction. I have such faith in the people doing the procedure and my ablility to heal. All that has happened in my life is for a reason and I use each new experience as education. No matter what happens today (whether I feel better or not) I have no regrets! I have learned who really cares about me as well. True friends show themselves when you need them. All the best to my friends and family and fellow MSers. What a beautiful world.
Monday, April 26, 2010
Tons of hours of travel and no sleep for 24 hours is not the best thing for an MS patient but here I am in Katowice Poland. The hotel is nice and the people are great. Can't believe that I am still able to stand. We arrived in Frankfurt an hour later than we should have due to a delay in Calgary. Did not make our connecting flight then the gong show began. They put us on a flight to Vienna Aus. with a different airline then Vienna to Krakow then a 40 min drive to Katowice. We had a wonderful supper then we are both in our rooms going to sleep probably til tomorrow morning. My feet are terribly swollen and I must rest. I am too excited to realize why I am here. Will need to be in lobby for 9 am as I have an eye test in the afternoon I have an MRV which is an MRI of the veins. Wednesday I have a doppler ultrasound and after that I have the procedure. I am so tired but really happy to be here. I thought this day would never come.
Friday, April 23, 2010
August 28, 2008 I went to emergency at RUH in Saskatoon with what my GP said was stroke-like symptoms. He assured me that he didn't think it was a stroke but knew something was up. Jim had just started a very late harvest and I called saying I had to leave for Saskatoon. Of course more stress making pressure for him to get out from under the combine, shower, drive to Rosetown then drive me to Saskatoon wondering what is wrong.
Immediately I was taken into emergency (no waiting room for me) I saw a neurologist resident then the chief resident came in followed by the head neurologist. I had about 30 tubes of blood taken and sent for a CT scan. Coming out of the scan the chief resident told me they saw white spots in the brain these could be old strokes or MS legions. I immediately turned to Jim and said Oh #*@!, it's MS. What took us so long to figure out it was MS? My dad died from this terrible disease. Not over yet need to officially rule out stroke so more trips to the city to go through the stroke clinic. Once stroke ruled out I finally had an MRI in December to get a better look at my brain. Hope was dashed in January when my official MS diagnosis came. Jim and I both in the neurologists office and she asked me if I had headaches, she asked this same thing at the stroke clinic and I had said no. To that question about headaches I said no but I have incredible pressure on my neck (right side) and it feels like a 200 pound man is sitting on my neck. She told me that this had nothing to do with neurology and to tell her something she can deal with. Later in June I gave her the same symptoms and she freaked on me, of course these were never recorded and I look back now thinking she must have known about the Zamboni theory then and thought I was fishing or something.
November 2009, not feeling too well and sleeping late 6:50 I get a call from my friend that woke me up. She said watch Canada AM there is something big about MS, something to do with the veins in the neck. I watched the blurb and then couldn't wait to see the full program on W5. Told Jim this is it because that has been my biggest complaint was my neck and the the theory made sense to me. I felt vascular problems in my neck and down my arm. Immediately on Monday I thought where could I go to get this done? I thought the Mayo Clinic in Rochester Minn, Phoned and they said they would have nothing to do with a vascular problem if I had MS and would not be able to go there. I couldn't believe my ears. Looked at the W5 website and started e-mailing. Joined Facebook CCSVI and TIMS (this is ms) What a lot of work I did.
A ton of new friends later I had a huge network at my fingertips. I had e-mailed Dr. Simka in Poland and didn't hear anything. I wanted my brother Warren to look into going to China but that was too difficult. People were getting dates in Poland and I wasn't hearing anything back from them. I learned on tims that Bulgaria was beginning so I immediately e-mailed. Then I thought I should email Poland and complain that people that e-mailed after me are getting dates. Shortly after Bulgaria said i had June 2010 and then I got one from Poland saying October 2010. Now what? I emailed Poland said that I would take 2010 and told Bulgaria I would go there but summer would be better. I told Poland if they had any cancellations I would take them. I kinda wanted to go to Poland because they had done more procedures there and Bulgaria was just beginning in April. On the 8th of April I got an email from Euromedic that I could get there on the 26th and have the procedure on the 28th. WHAT? My wishes came true! After talking to Jim he said for sure go and then there is more stress on him. Seeding is coming.
Not only Jim has helped me but so has my mom. Just having surgery in January she is coming to help watch my daughters while I am gone and Jim seeds. Next Blog will be about my getting ready.