My name is Lisa Chalke, I was diagnosed in June of 2017 with ALS. Doctors at Mass General Hospital classified it as the progressive deterioration of the bulbar muscle. This muscle controls breathing, swallowing, voice, and tongue movement. About five months after my diagnosis, I was having trouble eating/shallowing and needed to get a feeding tube installed. This disease has started to affect my body in new ways. I cannot hold up my head up by myself and now require support from a neck brace. Additionally, I have noticed that the left side of my body is now considerably weaker than my right side.
Despite all of this, I still believe that I’m blessed by God and he is watching over me. I still have the ability to see, hear, and I’m still capable of walking a few steps with my walker. Mass General and CCALS have provided me with different medical devices/machines that I use every day in my home. There is a BiPap to help with breathing, a suction machine to get the mucus out of my mouth, motorized wheel chair and a hospital bed that gives me the ability to adjust my position. My loving husband Steve and my five lovely daughters and many friends are there to help me!
For me ALS is a very curious disease and every day I am thankful to God that I am still able to meaningfully function. I pray that all those suffering from ALS will one day be free from the pain that it inflicts. There is currently no cure for ALS, but I’m hopeful that one day there will be.
Before I was diagnosed, I was very active in the community. I attended church several times a week, sang in the parish’s adult choir, taught CCD and I was watching a local school teacher’s child until they were eligible for preschool. My hobbies included singing, playing the piano, enjoying the outdoors, feeding the birds and gardening. Previously, I was a stay at home mom for Steve and I’s five daughters. I always thought I was a strong person. Over a year ago, I weighed 230 pounds and now I weigh 160 pounds. I guess I never really knew the meaning of strength…now I do. With God all things are possible – my husband Steve is going to lead the charge for the Polar Plunge in support of the Compassionate Care ALS in Falmouth, MA.
Our family is very grateful to Ron Hoffman and his team at CCALS for their ongoing support. CCALS have provided myself with a special stand for my formula feeding tube, a portable wheelchair with special cushion and air mattress for my hospital bed. They even got us in touch with someone to assemble a wheelchair ramp at our home and provided us with a loaner wheelchair accessible van that Steve and I were able to use to attend our daughter’s wedding. Compassionate Care ALS even has a close connection with Mass General Hospital’s ALS clinic where I receive all my medical treatment. The staff at Compassionate Care ALS have been extremely helpful on my ALS journey. Kristine introduced me to an app that I can use on both my iPhone and iPad to communicate. She even provided me with a portable keyboard and lap cushion for my iPad. Shannon of CCALS has coordinated many deliveries to Steve and I’s home. Ron, Kristine and Shannon visit periodically which is truly appreciated.
Cure ALS by supporting all those whom have been diagnosed with ALS by donating whatever you can to support Compassionate Care ALS – Falmouth, MA.
Life for Lisa: ALS Awareness Polar Plunge
Tuesday January 1st, 2019 at 12pm
Beach Parking Lot
98 Town Neck Road
Sandwich, MA 02563