Surviving Hurricane Katrina but Losing the Battle to ALS: My Mom's Story

This story is dedicated to my Mom, my hero and the most courageous woman I have ever had the pleasure of knowing and this is her story.

My Mom was born July 31, 1933 in Detroit, Michigan. She grew up and married my Dad in 1951, and they had three children. She suffered the loss of a child, many ups and downs in marriage and life but always remained my shining star. My Mom was smart and had great humor. She was a terrific Mom and Grandma and the center of our family. Mom and I were very close, even while living many states apart. We had a certain connection that I felt blessed to have. Even now, the connection is still there. I know she is with me, in the stars. She is there, caring, watching and loving.

My parents moved to the Mississippi coastline late in 2003. It was a place they both fell in love with when they had vacationed there, previously. The sandy beaches, beautiful Gulf Coast and a peaceful place to enjoy life. My Mom had been an entrepreneur for many years, owning her own antique business. This was her outlet and her joy. She set up shop in a nearby town on the Gulf Coast in an antique mall. She enjoyed her friends and keeping busy and was successful. My folks' home was a block off the beach road with a beautiful veranda to enjoy the refreshing breezes off the water. As the economy began to stiffen and my Dad's health declining, they decided to downsize and move to a smaller home a few miles away. This turned out to be a blessing from God. Little did they know they would be facing such a ferocious storm.

Another health issue reared it's head. My Mom was experiencing her own issues. She began with strange sensations and curling fingers on her right hand. In the Winter of 2005 she began looking for a doctor. She had always been in great health and had not seen a doctor, for anything, in many years. She and my Dad, both, are from an age of "doctoring oneself." Until my Dad's heart condition and Diabetes started in 2001, neither had had any desire or need to seek medical attention for anything. Mom found a doctor she felt comfortable with and the tests began with no sound reason for her symptoms. She continued living her daily life and slowly watched more symptoms appear. There was the sideways gate, the falling, the loss of strength in her arm. New appointments were scheduled with neurologists with many additional tests. There still were no answers. By the Spring of 2005, she was going to rehabilitation three days a week and on heavy doses of steroids to help her gain strength. Through all of this, her spirit was fairly good, in hopes that the doctors would find some answers. Many things were ruled out and a spinal surgery was discussed but canceled at the last minute by one neurologist. He was a visiting neurologist that was asked to review all the test results. We believe he suspected something but was not willing to diagnose, as he was not Mom's primary physician.

In August of 2005, a storm began to brew and build strength. My parents were about to experience their first hurricane. A category 5 hurricane, named Katrina decided to wreak havoc on the Gulf Coast. There were warnings to evacuate. Many residents did, up and down the coast. My parents were not those people. I last spoke with them on August 27^th. pleading, once again, to please leave. My Dad refused to believe the storm would hit them and Mom would not leave without him and said it was too late. They had already heard that most hotels were fully booked and there would be no place to stay. That was the last I heard from them. Katrina ravaged the coastline and all I was left with were news reports. Power was out, phones were out and by all the information I could get, I strongly believed they could not have survived the storm surge, from where they were located. It had been five days since Katrina had hit and I received a phone call. It was my Mom. They were alive, shaken and weary but on their way North. They had no idea what had really happened and how lucky they were until that first night at the hotel and they sat and watched the news of the devastation and cried. This was the beginning of the end for my Mom. When arriving in Michigan, where I live, my Mom told me bits and pieces of that night the storm hit, and we cried. Their home was damaged by large trees but water damage was minimal. A huge tree crashed through her bedroom ceiling, barely missing her. They had survived and that was the important thing. Their stay was brief because my Dad was concerned with getting the mess cleaned up and there were reports of heavy looting all up and down the coast. I could tell, Mom did not want to go back and to go back to what? No food supply, no electricity in blistering 90 degree heat, no phones. The areas hit by Katrina were destroyed. It is now, 2008, and there are areas still trying to recover. My parents returned to Mississippi. They returned to find many beloved things gone. The mall where my Mom's business was in...gone. The beautiful house with the veranda...gone. So much devastation and so many broken spirits.

The fall and winter of 2005 was filled with clean up of the area, as life became slightly more normal. Limited resources for people, in this area, was debilitating. The things the average person takes for granted every day were the main concern along the gulf coast. Banks were destroyed. Where do you get your money if there's no bank? Those on Social Security had to find other ways to access their money that was direct deposited. Grocery stores were destroyed, doctor's offices, businesses. Where do you purchase food, see your physician, get a prescription or even go to work, for that matter? You travel and hopefully you have enough gas to get to the nearest gas station. This went on for months and months. As for my Mom's condition, it worsened. Her doctor's office and neurologist's offices were reduced to rubble. Tracking down here physician was difficult but she was able to find out at a nearby hospital that most private practice doctors had left town to start over somewhere else. In the Spring of 2006, the hospital ended up giving a referral to a neurological clinic in Louisiana and there, the tests started all over again, from scratch. Mom's symptoms progressed quickly with more falling and less mobility which increased her trips to the emergency room. The emotional toll was getting the best of my parent's, as they struggled with every day life.

The official diagnosis came in October of 2006. ALS, also known as Lou Gehrig's Disease. That was the day my Mom gave up and gave in to dying. Amyotrophic Lateral Sclerosis (ALS) is a disorder of motor nerves. The motor nerves degenerate and die. When the motor nerves die, they are no longer able to send messages to the muscles which then become weak and eventually become unable to function. When the muscles no longer receive messages to enable them to function, they begin to "atrophy" or waste away. As for my Mom's diagnosis, nothing was ever the same after that moment. The clock was ticking and I would soon lose her forever. My best friend, my confidant, my hero, my Mom. It did not take long from that point and Mom had to be moved to and adult care home because her mobility was so limited. She struggled with feeding herself, going to the bathroom, and even small things like getting dressed. The progression of ALS is different for each patient but when my folks gave up and gave in, the search for medical treatments and options ended. There are no proven treatments for ALS and certainly no cure. However, there are ways to sustain quality of life and experimental drugs that do help many ALS patients. Everything was forgotten with the diagnosis. There was no more hope, no more joy....just waiting.

I tried to keep my Mom positive and often talked with her on the phone and was able to visit a few times. Thankfully, her speech was not effected until near the end. I feel extremely blessed that we had that time to just talk. In one particular conversation, I recall her telling me that the worst thing about ALS was the waiting. She said, "all you can do is wait for the end, you can't move, you can't feed yourself, change the TV channel, and your mind is the only thing ALS does not destroy...just a lot of time to think." That was the hardest part for my Mom. I tried my hardest to call several times a week just for that fact. To distract her mind, give her a few laughs and let her know I loved her.

My last trip to Mississippi was September 7, 2007. I was called and told to hurry. The last conversation I had with my Mom was September 2, 2007. She was weak and had stopped eating and drinking. When I arrived, she was heavily medicated and her breathing was slow but steady. Mom was going home and I needed to say good bye and I only left her side to go to Dad's to take a shower and grab some food. At 4:20 am, Sunday, September 9, 2007, my Mom woke me up. Fear was in her eyes and I knew she could not speak so we played the blinking game. Once, for yes and two, for no. I asked if it was time? She blinked, once. I told her I loved her and she blinked once. In a matter of minutes, we loved completely, prayed for strength and healing. We cried and said good bye. There really are no words to describe the death of someone you love so dearly. It's painful and sad and horribly difficult. My Mom was 74 yrs old and I was 41. It's been almost ten months and the hole is still in my heart and I still reach for the phone, at times, to call my Mom. ALS took my Mom but never my memories. As with the Katrina victims that are rebuilding their lives, so am I, without my Mom.

ALS was first identified in 1869, and to date, there is no cure and not much in the way of treatment for ALS patients. Most treatments are simply based on making the patient more comfortable. The life expectancy for the average ALS patient is 2-5 years from the time of diagnosis, but many live longer with increased treatment options, experimental drugs and the general progression of the disease. The progression for each patient is different. ALS research is ongoing with hopes that someday, science will come up with a cure. If you are interested in more information on ALS, I would strongly recommend visiting the ALS Association's website at www.alsa.org. They were a wealth of information for me and a wonderful organization that is marching ahead to help find a cure. There are also a few forums on the Internet for ALS patients and caregivers which offer support to the ALS community, as well. The network of ALS patients (PALS) and caregivers (CALS), that I interacted with, was incredible. They openly shared information, advise, comfort and friendship. They are amazing people and I encourage you to visit, contribute and get involved in finding a cure for ALS. I know, for myself, I could not have gotten through this without them. Please, help support your local or the National ALS Chapter.