#VoiceYourLove - The ALS Association
Voice Your Love
for ALS Heroes

A site to honor the lives of those we have lost and those still fighting.

Hoping for a Treatment or a Cure

Kahea S. Hanover Pk, Illinois

July 19, 2014 my mother was diagnosed with ALS, and it is a day that no one in our family will ever forget! It started with her dropping a bowl of food a week before when she had a breakdown in the kitchen while cooking. She cried out in frustration and confusion “I am a catastrophe in the kitchen now!” I attempted to comfort her, but it was hard as she had been an avid cook/baker for years being a stay at home mom and cooking in her spare time after she started working. The dreaded news that July was the explanation for the weakness in her hands, why my dad and I were having a hard time understanding her as well as the mood swings we all had noticed. Now it has been a little over 6 months since my mom’s diagnosis, and the three of us are struggling to complete our daily routines without bouts of crying! My mom, dad and I moved to Chicago in 1991 from Texas and are the only three family members here as we moved for my dad’s job. This has been horrendous news that no one is sure of how to deal with it. My mom’s speech has become more slurred since July and some days are worse than others when she talks. She has a hard time using her right hand for some things as well as her right leg being weak. Despite this diagnosis of what I now have learned a great deal about (I did not know what ALS was 6 months ago), I have tried to make plans for care and thoughts about what to do if her progression worsens. So far, it seems to be slow……but my family and I would like to move back to Texas in order to receive emotional support from family. My mom and dad were reluctant to even tell a few family friends here in Chicago, until I expressed how much the three of us will need the support. Now, my parents are gradually understanding that we are not going to be able to do this alone. With prayer and hope, we have pushed on this much since July 19, 2014. From what I hear and have read, there is a long way to go. My mother is also experiencing pseudobulbar affect where she has unexplained crying or laughing spells that may be inappropriate, along with depression and fatigue. Now that my family and I think back, her symptoms seemed to have been noticed in November 2013, but no one had any idea of what was taking place. We have been praying and hoping….my mother seems to be the strongest of the three as she claims that she does not have ALS. As a counselor in training, I would say she’s in denial per the two doctor’s we have seen. From a spiritual point of view, she has faith that she will be healed. We are hoping for a miracle!