Before I was diagnosed with ALS in 2012, I was working as a puppetry artist and massage therapist in NYC. It has been very difficult to deal with not being able to support myself these past eight years. It is because I am still making art that I am able to cope with what is happening in my body as ALS transforms it. Even now, it is a daily struggle to keep fighting for my life. I am currently living off of my disability payments, which is really only covering my very basic needs like rent, cell phone, and some groceries. As there are still no great allopathic treatments for ALS, I have been turning to alternative healing methods to gain relief when I am able to afford it. Massage therapy and acupuncture greatly help in pain management, stress reduction, and keeping my spasms in check. I\'ve found that the Deana Protocol, provided by Simplesea, helps me to have better energy and muscle strength. Intramuscular injections of Methylcobalamin B12, which we get from the Hopewell Pharmacy, works wonders for helping me better metabolize my food into energy which also helps stabilize my mood and to focus on the things that make me feel human, like drawing or going outside. All of these treatments, which are essential to not only making my daily life more comfortable but bearable, are not covered by my insurance. We have to have yearly fundraising in order to pay for these treatments as well as caregivers, so I can live at home. Even despite the generosity of our community, my mother and I continue to have to stretch what finances we have very thin. The fact that I continue to find ways to create and do what I love in the face of a debilitating terminal illness has given many people hope to push through difficulties in their own lives. I dream of helping as many people as I can to know that beauty can be found in unlikely places and that honoring your gifts no matter what happens will be a source of light for the world. But I cannot do this without considerable financial support.
I was an avid traveler, healthy, and practiced law as my profession. I played college tennis, ran marathons and did triathlons. Then one day in August of 2016, I started slurring my words. I underwent many tests and was diagnosed with Bulbar ALS in May of 2017. I have two boys ages 18 and 13. I would like to see them grow up and be there for them as well. I am 56 years young. As of now, I cannot speak, eat, and have lost the use of my hands, arms, and shoulders. I am trying everything and need help to heal.