BC Residents today is the 2013 provincial election and polls have not closed. I hope you all exersized your right to vote . The right our ancestors fought and died for, and for all the women who gave spent their lives working towards us having the right now to vote.  as well as for all the countries who do not have the same right as us. We need to protect our right and use it. We only have to do it every 4 years and even though you can never be sure what politicians tell you,  Please be sure to vote. Dont not vote because you dont like the leaders, vote for the MLAs in your community who you believe would most benift you and your life and your community.  vote for who can do the most good and be your voice and your advocate. For those who support your beliefs and your values.  Who will help your career and your future and for your familys future.

Be educated, be informed and read the platforms. But most of all please please vote! its our privilage and if we dont use it we could loose it!

I am happy to say I have finally connect with our local NDP Candidate Kathy Kendall to discuss the up and coming election and PKU. I would first off like to thank both Terry Lake and Kathy Kendall for taking time away from there campaigning and busy schedules to listen to my message and my concerns. I also want to thank party leader Adrian Dix for responding to my emails. I am very grateful for the support I have seen from both parties. Of course now I am faced with making my final decision for the vote on Tuesday. 

However let me for now put that aside and tell you about my call with Kathy. 

Kathy and I connected by email on friday, however I was sleeping from night shift and missed her email. I responded to her email in the early hours of saturday morning . Kathys team had looked up my home adress and she had planned to stop by but was unable to find a listed phone number for me. I do not have a house line so I only have a cell phone and of course those are not listed. Due to the shorten time frame and the election just around the corner we set up a meeting to speak on the phone. 

Kathy called me at home tonight at 8:30 and introduced her self to me. We spoke again mostly on PKU. I explained my concerns with how our last year of campaigning had been met in the liberal goverment and how BC is the worse place to have PKU do to their lack of support and treatment coverage. Kathy listened intently and asked how BC was behind the rest of Canada . We talked about the Comprehensive brain stradagey plan by CanPKU and what our requests where. She requested a copy of the plan after the election. We also talked about my desire to be a mother and our personal reasons for holding off. How we where scared and waiting for better aces to treatments and more support for adults. I talked about my past experiences and how my diet and my levels are directly linked to my income as a causal nurse. I felt as a women Kathy could relate to my desire to be a mom, and kathy  has a back ground as a legal aide lawyer and has made it a point to support lower income families and advocates for more supports for services to the lower class. Such as access to food. I felt that my message was herd by Kathy and was happy to hear that if she was elected she would continue to work with me and meet with me be an advocate for me and for PKU. I invited her to the Kamloops walk for PKU and told her about a few more families in her riding about PKU and some if the issues they face. both as adults, families and children. 

After discussing PKU we briefly talked about LPN’s, the future of health care and why the NDP voted against bill 18.  

Our call was cut short and it was getting late but Kathy invited me to continue to email her if I had anything else to discuss or had any more questions.  

So now we wait, after the votes or casted and the final tallies are in, I will be watching intensely and plan on following up as soon as possible with my elected MLA. 

I wish all parties the best of luck and look forward to working with either Terry Lake or Kathy Kendall. 

To everyone else, please go out and vote!! please please please. It is our democratic right and we need to exersize that right so that one day it is not taken away from us! 

As I said in my previous post, this election I am taking a more involved approach to voting.  For the first time I am focusing my energy on making the best informed decision and have been continuing my hunt for information and support for PKU.

you all know by now , that I emailed all the candidate in my riding as well as the party leaders regarding my concerns and questions regarding their platforms, as well as if they will support PKU and our campaign for coverage and support.   I had quiet the success with my meeting with Liberal MLA Terry Lake , that I reported on in my last post. However it has not carried over to the other parties.  However I have replied a reply from the NDP and from the Conservatives.   Though I cant say I am interly impressed.

The Conservatives only referred me to there website to review their platform. They did not take the personal time to reply to my questions or explain anything.

I was however surprised to reply a personal email from NDP Party Leader Adrain Dix.

Here is what Mr. Dix had to say,

” Thank you for sharing your experiences as a Phenylketonuria patient, and of the work you have been doing as an advocate in the community with CanPKU. I am sorry to hear that you have yet to receive a reply to A Comprehensive Brain Protection Strategy for People with PKU. We endeavour to respond to all correspondence in a timely fashion. However, depending on the nature of the submission, a reply might require extra time to prepare.

The BC NDP has not considered the issue of extending access to treatment and improving supports for PKU patients. However, our elected MLAs would be glad to meet with you after the election to discuss this issue.” 

Where as I am not as impressed as I was with Terry Lake, I am happy to have a reply from Adrian Dix. Its not as personal or as a face to face, I appreciated that he took the time from his campaign to actually reply to me. It is not the answer I wanted to here but I can work with it.  I did also email my NDP MLA Kathy Kendell but have not heard back from her. If elected I will continue to reach out to her and get a face to face meeting.

I have not received a reply from the Green Party or their leader Jane Sterk. We do not have a candidate in kamloops. I also emailed Premier Christy Clark.  Myself or CanPKU has not received any feed back or contact from her despite our best efforts.

I have voted NDP every year since I began voting, I never thought I would ever vote Liberal. However Cole had a good point, you dont vote for the leader, you vote for  the person in your area will help and benefit your life.  For that reason I will be voting for Mr. Terry Lake for the 2013 Provincial Election.  If the NDP wins the election I will continue my efforts to reach out to them and engage them in PKU.

If you are from British Columbia, you know we have a provincial election on May 14 th 2013. In 2 weeks. If you are like me, you really honestly don’t know who to vote for. Honestly until this Year I have never really focused on it to much or paid a lot of attention to politicians They always just seem to dance around issues, creating more confusion then help. So this year I set out on my own agenda to learn as much as I could to help me make my own personal, and informed decision  Based on factors that concerned me and would help me decide how to vote. Obviously one of those key factors was and is PKU. I want an MLA who will support me and help strength the voice of others like me. So on Tuesday morning I spent my day off researching campaign parties, and their platforms. As well as writing a list of questions I would ask if give the opportunity. I also emailed each party leader and each party candidate. My first reply came from the conservatives  it was no help at all and a generic response directing me to their website and “article 5 ” of there health care platform. This was not the answer I was looking for. i wanted to see if I got any personal responses. Who felt I was important enough to respond to and connect with.  To my surprise I got a personal email from our local kamloops MLA Terry Lake. I was sceptical as I had tried to engage him in the past with information on PKU and felt brushed off and un supported. However Mr. Lake extended an invitation to meet with me and discuss my concerns and questions . I did not know what to expect, if he would be fake? if he would lie to me and make me promises? if he would seem uninterested or supportive? needless to say I was anxious. I did not know what to expect. I set a meeting to meet with him today and began to prepare myself for a strong and factual exchange while taking the opportunity to educate Mr. Lake on PKU and share some of my life with him. I took a big bag of materials with me that included receipts of my medical foods, a blood dot card and sample, my food list book, my food tracking note book, samples of my food and formula, the CanPKU Comprehensive brain protection strategy plan , my petition and anything I could find to make this very real for him.

I met with Mr. Lake at 12:40 pm today and he was gracious enough to extend me an hour of his time. I found him to be responsive, interested  educated aware and supportive. Not what I was expecting , however I am very please. We had a lengthy conversation  I was able to get my voice herd from an adults perspective.  We talked about MPKU and my desire to have my own biological child , the side effects I have suffered, the experiences I have endured, my many hospital admissions, my struggles in school and holding a job, supporting myself and finical burden on my spouse and I .

Mr. Lake asked me a lot of questions and took a lot of notes. He did not see fake , he did not offer promises such as ” if im elected” he did not seem just out to get my vote. He was interested and concerned.  He was also realistic and understood the barricade of politics and funding, money and big drug companies. He kept all the materials I gave him. We of course discussed KUVAN and peg pal ,  the beneifts, the cost and how many patients in BC it would benfit. He did not close down that discussion and understood the benefits. We of course spent alot of time talking about the physiological side of PKU which was a point I really wanted to get across. It is not just all about treatment, we need supports. We talked in length about that and talked about some key points from the CanPKU brain protection strategy plan.  I did not feel rushed and that I only had a few minutes to have my message herd. I actually felt very relaxed and like we where just having a discussion. Exchanging facts.

We also talked about his life as a Veterinarian and his experiences with treating animals that had  renal failure with low protein food and how animals can have PKU too. He knew from those experiences how costly low protein food could be. He recognized its not the same thing, but it painted a picture. I met his daughter who is studying I think , a masters in science and health who had learnt a bit about PKU in her classes. Mr. Lake liked my idea of guest speaking at nursing classes about PKU to help extend the education. He also gave me some names of media contact who might be willing to help spread my story.

Mr.Lake understood the effects that a MPKU mothers levels could have on a unborn baby and the risk and expense that child would cost the government  as well as children who are already in the system from mothers who cannot look after then due to being off diet.

Mr.Lake noted the fact that we have a strong voice in the cabinet ministries from Bill Bennett and believes that the 2 of them together in the same corner can help us even more.

He has offered his support and has agreed to meet with me again and to continue to work with me.

Even though we spent the majority of our time speaking about PKU , He did take the time to answer my other questions regarding my professional interests as a LPN and my concerns with out health care. He even took the time to discuss our local economy and the potential of the AJAX mine here in kamloops, as well as environmental concerns and family issues. Even education.

Near the end of my meeting I walked him through a few days in my note book on what my meals looked liked, how restricted I was and what happens when I don’t have my food prepared and baked a head of time. He could understand just how much more that there is and that one does not consider that we go through on a daily basis.

I ended the meeting by extending him an invite to the “kamloops walk for PKU ” on june 1st. and even though its 2 weeks after the election and no one know where they will be at he said I could send him an invite via email and he wrote it down.

All in all, I feel very good after meeting with Terry Lake and I am so glad he took the time to meet with me. That he gave me the opportunity face to face to have my voice herd , specially during this busy time of campaigning. That personal connection will go a very long way when I take to the polls on May 14 th.

Either i am incredible naive and Mr. Lake is a very very good politician or He really is all that he portrays  Currently as of today, I am learning towards the latter ,And that makes me feel pretty at ease and confident that I have found a local allie in advocacy for PKU!