Wednesday, August 18, 2010

Finally an Update

Hi Strangers,

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 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.