Hi, my name is Lisa. I am 44 and have one boy named Andrew who is age 12 that I have shared custody with his dad. My son is equal parts pain in the rear and adorable, sensitive, helpful young man. We have a superdog, Gracie, who loves to snuggle. She's a Chu-weenie. I brought her home from the pound for my mental health and companionship and have not been disappointed. We were meant for one another. She seems very grateful for having been rescued. I have a long term relationship with a great man named Mike[pictured above]. We live together now that my care needs have increased. He keeps me strong by believing in me. And he takes care of me beyond what I ever could have imagined. And I love him so much.
Most of my career I was a Litigation Paralegal. I wish I could say this was my calling, but I can finally admit I don't have a thick enough skin to interact with lawyers. Hey, the money was good. I've always enjoyed fitness, the outdoors (I live in the Pacific Northwest), seeing new places and spending time with my girlfriends. My priority is trying to raise my son to have compassion for others and great self esteem. This is not always easy. I want to keep a good sense of humor, positive attitude and seek enlightenment which seems to be evolving the longer i live with this ALS. I can easily recognize the toxic people in my life and choose to surround myself with encouraging and supportive people. I've met some of the greatest people because of this illness and learned enough to know how much I need to learn. I'm blessed to be involved with such a courageous, intelligent and kind group of people.
My first symptom was cramping in left middle finger, followed by left hand atrophy. (Nov. 2003.) After several docs, tests, poking, prodding, bloodlet and shocking I was diagnosed in April 2004, confirmed by a second specialist in San Francisco. I was told I have a slowly progressing case which has proven to be true. My left hand and arm are extremely atrophied and is basically no longer useful. My right hand began losing strength and became atrophied in March 2007. My current way of getting through life will change dramatically when i lose full function of my right hand. Just in November 2007 I began noticing weakness in my left leg, creating a limp at first. Now my legs are so weak i do not walk. My swallowing and breathing are now compromised. My current ALS neurologist says because of my slow progression I will live for a very long time. I like the sound of that. I'm still hoping she will find a better diagnosis than ALS, but I think I have accepted my fate (for now). I have not worked since Feb. 2004 initially due to a lay off but later because my doctor's theory for treatment and/or to slow progression is taking very good care of myself. I eliminate stress as much as possible so no longer working helps with that and I am getting a lot of rest. At this point I cannot imagine any occupation I could physically manage. Initially after my diagnosis I was depressed and just sat around waiting to die. When I realized that wasnt going to happen any time soon, I joined a gym and did what I could for over 4 years. Sometimes I slip into a funk because this disease is challenging but I quickly count my blessings and realize life can always be worse. I hadn't realized before how much i really do want to live until the idea of dying became a topic. I try to eat healthy but I am also human and enjoy an active social life so I get off track periodically. I love dark chocolate. Who doesn't? I have absolutely no idea why I have ALS. I think it is a learning lesson of some sort. But what?? The million dollar question. As a highly independent person I continue to struggle to relinquish control and allow others to help me but get caught frustrated more often before seeking help. I am learning to pace myself and expect a tiny bit less or maybe different from myself which can easily end up with me doing nothing and for the first time in my life I don't feel guilty about it because I know I am taking care of myself. I currently have a care team based on the "Share the Care" concept which is from a book endorsed by the ALS organization. Having an organized care group is manditory.
This is truly a journey. I think anyone who has ALS is amazing, strong and brave and am thrilled to have found this resource. I have met so many fabulous people on this site and cherish the contact. I love this one thing I read recently, written by a PALS:"Sometimes you need to be handed a challenge bigger than anything you could have imagined in order to appreciate the goodness in every day, in the small things and in order to discover the huge, endless reservoir of courage in yourself". I wish i had written that! It is a unique illness that bonds us. Best wishes to you all! Keep a positive attitude! God must have a plan.... Or, I'm just completely crazy.
Hey, where's the spell check on this thing?
updated to add: photo #2 is my big step into manditory short hair. also note my fine power lift recliner.