How am I Doing? (Jan, 2018)
I am happy to report that the physical deterioration from ALS seems to be slowing down since the time of my diagnosis, especially within this last year or so. I attribute this to many things, including a healthy diet, a targeted nutritional supplement routine, listening to and loving my body, and a general positive outlook and appreciation for life. Tools like meditation and getting outside in my power chair nearly every day have been invaluable as well!
For almost a year I had been losing a pound or two of weight every month, but at the time of writing this I have actually been gaining weight for nearly 8 months. I was 112 pounds back in April 2017 and now in January 2018 and I am 117 pounds. This may seem like a modest amount of weight gain, but in living with ALS not losing weight over time is a big deal!
I hope with every fiber of my being that I will have the opportunity to get better. I long to be able to walk and to run, to be able to move my fingers again and write with a pen or pencil. I miss things like being able to pet my dog, to wrap my arms around someone in an embrace, and a thousand other little things that most people take for granted every day. I am learning the importance of taking things one day at a time however, and to enjoy the journey as it is. Each day is a new experience and a new opportunity to embrace what is right in front of me.
Perhaps one of the biggest reasons that I am doing and feeling as well as I am is that I'm living a life of purpose, and that purpose is to be a source of inspiration and positivity. Self-publishing my poetry book Seeds of Light Sown after being diagnosed was a big accomplishment for me, and I am excited about the completion of this website. The knowledge that it might help someone in some way means the world to me.
In addition, I have been more active assisting in ALS fundraising and raising awareness, as well as spreading a positive message through public speaking.
In August of 2017 I had the honor of being a part of the annual Every Drop Adds Up Festival which was hosted by Cytokinetics in partnership with the ALS Association Golden West Chapter. All proceeds from this event went to fund ALS patient care research and public awareness, and the event featured an auction of artwork inspired by my poetry! It was such a cool experience, and to get a glimpse of it check out the professional video of the event to the right.
I have also had the privilege of guiding several meditations for family members of those living with ALS. Doing things like this is what makes this experience worth it, and being of service is what truly gets me excited about this journey.
A Note to Readers:
Whether you are going through the extremely difficult challenge of living with ALS, another chronic illness, or are completely healthy there is one thing above all else I hope you take away from visiting this website. If I can be going through one of the toughest challenges possible in living with ALS and thrive, you can too. Yes, there will be dark days with clouds looming overhead but I just want you to know that even though you may not see it the sun is there. Do not be afraid to seek it out feel its warmth on your face.
We can spend all the time in the world thinking about how long we might be here, but the most that anyone can ask out of life is to enjoy the ride. Above all else I hope that this website is a reminder for you to do just that.