Friday, November 2, 2012
What a beautiful day, We are here in NOLA and I have to say I love it here. This whole journey across America for ALS has been such an uplifting experience in so many ways. To pinpoint a favorite place that would be very difficult but for a favorite moment I too have many but one keeps putting tears in my eyes and that would be at my niece's in Minnesota. As we spent time together we had laughter and tears and tiny feet running all around. We also had great conversations. However the moment that tears me up was when Shan was painting the RV and Avery Shan's daughter wanting to help and we painted her feet and put her footprints on the RV. Having those footprints mean very much to me even though they are a bit smudged. The meaning for me may not be what others have but to me its fighting for a cure for all of my grand babies, nieces and nephews. Avery's footprints are my symbol that I must continue my mission so that our babies and their babies can have effective treatment and a cure for ALS. I am not sure the type of ALS that I have but I will fight with every fibor of my being that no one else is affected in my family with ALS. Many of people may think this disease isn't that bad, and for me I am doing good as a matter of fact I am doing great. But others aren't as lucky. Many have machines helping them breathe. Many can't eat or drink and many lay in bed unable to move or even communicate. Lets face the facts that ALS is a horrible disease but what to me is even harder to accept is that this disease has been around since the 1800's... Yes that long and it is and always have been a disease that will kill you. This disease still does not have treatment or a cure. Further more its a underfunded disease. ALS SUCKS but what will suck more is if our government stops the funding that we already have. What our government doesn't and refuses to see the length that we the ALS patient will go to to help raise Awareness and money and yet all that matters to them who is better the democrats or the republicans. Lets face it they don't care or understand what we deal with daily. I consider myself lucky. I have great care and support, many do not. So when we took on this journey I am hoping to get someone to listen and understand that we the patient don't have time to figure out who is better. We need someone who will stand up and say we have a cure and effective treatment. So when and it you see our RV look at Avery's footprints and know that this is my reason for raising ALS Awareness. ALS can mess with me but don't mess or even think about touching my family. So until next time live strong and never give up!