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.