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.