ALS - A Path Unknown

On July 3rd, 2014 my mom was diagnosed with ALS.  After months and months of doctors appointments and tests we were referred to a Neurologist.  The Neurologist ran more tests and determined that my mom has ALS.  ALS (Amyotrophic Lateral Sclerosis) is also commonly known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that causes muscle weakness, paralysis, and ultimately, respiratory failure.

My mom's symptoms started in the fall of 2013 when she thought her tongue was swollen.  Her speech was slurred and it was more difficult for her to talk.  We were told by the HCMC ALS Clinic that in most cases it takes about 1 year for an ALS diagnosis because there isn't a test to show you have ALS.  It is pretty much eliminating everything else that could be causing your systems.

This is a pretty devastating diagnosis as there is no cure and only 1 FDA approved drug that is known to extend a person's life by 3 months.  1 in 5 ALS patients have symptoms that start in the mouth and throat area and can cause difficulty earlier as this effects your breathing and swallowing.  ALS is not very common and there are only 30,000 Americans living with this disease right now.

In late July the "Ice Bucket Challenge" exploded on social media.  For several weeks millions of people participated in this challenge and millions of $'s were donated to help fight ALS.  This is huge for a disease that not many people knew about just a few months ago.  I want to thank all my friends and family that donated in honor of my mom.

ALS patients find that they are very fatigued doing normal activities.  The reason for this is unknown, but ALS attacks certain cells in the brain and spinal cord that keep our muscles moving.  This causes weakness and eventually an inability to move any part of your body, inability to speak or communicate with anything other than your eyes, and to rely on a feeding tube for nutrition.  My mom is currently experiencing a lot of fatigue, weakness in her arms and legs (she still can walk, but not for long distances), very difficult time speaking, and eating.  Since this disease is progressive these things will just get harder and harder.

My mom is in good spirits about her diagnosis.  We have learned to take one day at a time and that God is in control.  My mom has a very strong spirit and that does allow us to accept and have peace with our journey.

We made the decision to have my mom stop watching Kaitlyn and Gavin at the beginning of the school year.  So, we have had a lot of transitions this fall.

We try to spend as much time as we can with Nana!  Here is some fun pictures of us enjoying her pool at the apartment.

My mom shrunk... She is now 4'11".  

Nana and Gavin

Nana and Kaitlyn