The ALS Association

I hope I have inspired someone to join the ALS family

Larry S. New Llano, Louisiana

With today being the last day of MAY ALS AWARENESS Month (2014) during the month I have been looking back on the year 2011. I would like to share with you in a few words about my experience with ALS. Long story short. I was in Kuwait when I first notice a change in my voice. Then I went to Afghanistan and my voice continued to get worse. I had other symptoms of sickness. I came home on Jan 2, 2011. My voice continued to get worse to the point I could only speak a couple of words at a time. I could not speak in sentences. I could not form words. I lost my voice on March 6, 2011. This started what my wife and I call the "Silent Journey." All of the other symptoms were getting worse, chewing, swallowing, chocking, cramps in my legs, feet, and hands. After several days I could get a low whisper out a little or a grunt. I went to several ENT doctors, Voice Spec, Vocal Cord Spec but to no avail. They did not understand why my voice went away. My family doctor sent me to see a neurologist. On July 29, 2011, I went to see a neurologist. After a thorough examination he told my wife (Nancy) and I that he thought I had Lou Gehrig's Disease (ALS) but would not confirm until all the tests were done. He said there were symptoms of ALS. He wanted me to have a EMG/NCV and some other tests. We were shocked; We never expected a report like this. We couldn't believe it. The doctor left the room after he gave us the information. I tried to tell Nancy not too worried for everything would be ok. We had to put all of our trust in the Lord. We did not want to get so wrap up in this negative report until all the tests were done. I left a message with the doctor, God heals negative reports, God can heal my tongue, and Lord's Will, my tongue will be healed. Lords Will, God will heal the ALS symptoms. Lord's Will, I will talk again. As we drove back home we cried some, and it was very quiet. We went home and went online to read about ALS. Everything we read was negative. Since I could not talk about it made it very hard on us. But we manage with the help of the Lord. I would write notes as much as my hands allowed me too and move my head up and down or sideways for yes or no. On Aug 4, 2011, day before my 65th birthday, I went to have all the tests done. As I drove their I prayed, Lord, if it is your will that I have ALS, I ask you Lord to give my wife and I the strength to accept it. I had several tests done to include EMG/NCV. Later that day, I was diagnosed/confirmed with Bulbar ALS Onset. My ALS Journey started. The doctor told us that the ALS started in my tongue. At this point I was treated as a ALS patient. I was put on RiIutek ALS medicine. I was schedule for rehab. I felt like my life was falling apart. My wife and I were shocked and devastated with the terrible news. I was told that I would never talk again and as the disease progressed I would eventually be in a wheelchair. I will never forget leaving the neurologist's office. There were so many things going through my mind. There was so much I wanted to say but could not share with my wife because I could not talk. I was so worried about my wife and family. This was going to be such a burden on my family, especially my wife. but I know that sometimes God will allow things on us but He will always be there to help bring us through it. This was a test of faith. Everything that happens to us is a test of faith. As I was driving back home, I cried out to the Lord, have mercy on me, heal me Lord of ALS and give my voice back. I will surrender and give you my all. I will live my life for you. I started rehab. About three months later, the ALS symptoms got worse. I was provided a Dynavox Vmax+ with Eyemax System to communicate with my eyes. The ALS symptoms was muscles weakness in my legs, feet, hands, cramping in my legs, feet and hands, the cramping was so extremely painful, I would try to stand and walk it out, the muscles was so tight, then I began to fall at times, twitching in my right arm, problems with eating, chewing, swallowing, chocking, my jaws got tired, energy level decreased, tremors in my tongue, wavy tongue, and it got to a point I could not hold anything in my hands, doing simple things with my hands became a problem. With all the negative information we had about ALS, prognosis 2-5 years, I never lost the determination, dedication and courage to overcome these circumstances. Later on, miracles started to happen, slowly the ALS symptoms was improving. On December 13, 2011, I had my third visit with the doctors and speech therapist. This was the worse visit out of the three for I could not even make a sound. During the therapy I had to stay in prayer constantly. Only because of God's Grace and Mercy I was healed of Bulbar ALS Onset and on December 13, 2011, Jesus touched my voice and healed it. I talked for the first time in 10 months. This was truly divine intervention. I am completely healed of ALS symptoms, Bulbar ALS Onset and my voice is good. I am so blessed to have been healed of Bulbar ALS Onset, ALS symptoms, able to talk again. I was told several times that morning of Dec 13,2011, there was nothing else could be done for me. I was not ready to give up. I was not going to give up. I would never give up. My wife and I just kept praying. There were several times that morning that I stopped the therapy and prayed. I say to you, God can heal ALS. It is the Lord's Will for everyone to be healed. Whatever God's Will is for your life. God chose you for a reason and purpose. God has a plan for everyone. God allowed this disease on you for a reason and purpose. God will give you the strength and courage to travel the journey. God will be glorified for this. What God did for me, he can do for you. I tell you, never give up, never give up, keep believing, keep praying, focus on God's word, put all your faith and trust in God. If you don't quit. God will never quit. Jesus is the Healer... The doctors and medicine could not heal me. JUST JESUS. JUST JESUS. I give all the glory to God. Praise God. Praise God in the good times. Praise God in the bad times. Jesus loves you & family. What God allows on you, he will help you through it. There were times that I didn't know if I was going to make it through. God gave me the strength and courage to make it through. I would not have made it without God in my life. I had to go through this disease, suffering, to be the person the Lord wanted me to be... My theme" Matthew 19:26; With men this is impossible; but with God all things are possible! Through it all-God will make a way! God bless you & family. I am so blessed to have been healed of Bulbar ALS Onset, ALS symptoms and able to talk again. God healed me for a reason and purpose. There has been a lot done to bring ALS AWARENESS BUT there is a lot more to be done. I choose to do fundraisers and bring ALS Awareness in my community and where ever I go. We must get the word out about ALS AWARENESS. Whatever I can do, I am willing. ALS is very dear to my heart. We need to support PALS (Person with ALS) and families to help spreading awareness about this disease! God has called me to reach out to pALS and Families. We will not give up until a cure is found. We are praying for God to send a cure and treatment for ALS soon. I believe a cure and treatment for ALS is coming soon. God is in control. I choose to be positive, hopeful, to advocate, until we can see a world without ALS. I hope I have inspired someone to join the ALS family, ALS Association, in praying and fighting, and walking to defeat ALS. With God's help, we will win! ALS will be defeated! There is VICTORY IN JESUS!

Powered by Blackbaud
nonprofit software