Do you have ALS diagnosis and live with passion, live to the fullest extent with fulfillment, meaning and happiness despite facing the unthinkable? If so, please consider sharing your wisdom and inspiration with a larger audience, to help others live to the fullest extent possible with “the hand of cards” that life has dealt them.
I would like to invite people with ALS to submit an article about what you believe allows you to have fulfillment and deep meaning in the face of ALS, to post on THE HEALERS website. The purpose is to inspire others who have ALS as well great numbers who live with despair in less challenging circumstances. Email drcraigoster@comcast.net if you are interested.
Gratefully,
Dr Craig, 19-year survivor of ALS & Co-founder/Director of THE HEALERS campaign
hey doc! Where can I email my latest article?
Robert, email drcraigoster@comcast.net original content article, not previously posted online.
Inspired to Inspire
After more than two years of testing symptoms that began with a sore pinky finger, I was finally diagnosed with ALS. I had spent two years researching my symptoms and possible diseases and ALS was the one diagnosis I had feared the most! May 10, 2010, I knew I was going to die in a few years, and I knew it would be a slow and agonizing journey to get there. From the research I had done I knew I had received a devastating prognosis with no hope for survival or miraculous cure. Having a couple of years to prepare for the worst allowed me to accept my fate with a great amount of dignity. It was, at the very least, nice to have the mystery of my declining health resolved. The enigma now lifted, I had to decide how I was going to live out the remainder of my life. Was I to resign what time I had left? Remove myself from the world around me and wither away encased by fear and self-pity? Certainly it was an option, but not one that suited my personality. I had always been a motivator and a leader. So rather than hide, I decided to create a Facebook page and share my experiences with this disease and how it changed my life. ALS Take It All – But Leave My Soul quickly became an outlet for me to share my thoughts and in doing so, purge my soul and share my heart. I did not realize that as I shared I would profoundly touch the hearts and minds of so many.
Here are examples of my Facebook posts
a couple of years ago I was 230 lbs. Now I barely tip the scales at 140 lbs. Every pound lost was muscle. If you look at me and believe that I am half the man I used to be then you are using your eyes! Look with your heart and you will see I am a giant. For I believe the true measure of a person lies in their soul and their ability to love themselves and others. Yes, I believe I have actually grown!
Every day, when I wake up, I have to affirm that I am going to LIVE today! It would be so much easier to give up. So much easier to not try. So much easier to complain about what I cannot do. But that is not who I am. I feel beauty around me though I cannot see it. I celebrate what I can do, rather than get dragged down by that which I cannot. Every day I decide that I am worthy to be happy and enjoy the life I have been given. ALS can have my body, but it will never steal my soul.
I found the more I shared – the more I inspired. The more I inspired – the more I fulfilled my purpose. The more I fulfilled my purpose – the better I felt. I received heartfelt messages that let me know my words and life had impact. I knew my life and death now held meaning and that gave me the courage to face this disease with a fearless heart. It is through sharing and educating others that I learned the value of living with harsh diversity and the true power of a smile.
I began to carry this new found strength like a sword and shield to help me further my growth and acceptance of the fate I had been dealt. I never felt self-pity and never felt like I was given the short stick. As I reached out to educate and inspire people, I realized I was reaching more than PALS (People with ALS). I was touching the hearts of people with all kinds of diseases, people with sick spouses, children or family members. Even more profound were the healthy people who would write to me and tell me that my words encouraged them to live more meaningful lives. Each said they learned to focus and stop sweating the small things. What great satisfaction I gained in my own life from knowing that I impacted others so profoundly. I resigned myself to take on the role of Soul Warrior. A title I gave myself and all those who follow me.
I was well prepared mentally for my first bout with a near death experience. In July 2013, I came down with rapid pneumonia and spent five days in Intensive Care. I had been on Bipap for over a year as a normal progression of this disease. The loss of muscle of the diaphragm and tongue made it difficult to breathe, talk or swallow. I was due to aspirate something. While in ICU I surprised the nurses by smiling the whole time. My need to inspire is constant and my absence from Facebook had me feeling out of touch. The happiness I brought to the staff helped me recharge my spirit and heal at a record pace. People really are the power behind my strength. I could hardly wait to get home to share my experience and reinvigorate my cause. This summer I was selected by the local ALS Society to write a speech that my wife Tadra delivered. I had come full circle as a self-proclaimed ambassador. I may be a guy with not much time left, but I will continue to inspire and love every day that I am allowed to experience – good or bad! I am now an experienced PALS and say this with knowledge and personal conviction: ALS steals your body not your soul, your laughter not your smile and your future not your hope! Words I live, teach and inspire by.
What is ALS? ALS (Amyotrophic Lateral Sclerosis) is also known as Lou Gehrig’s disease. ALS is a rapidly degenerative, always fatal neuromuscular disease. It attacks the nerves that the body would normally use to send messages from the brain to the muscle, resulting in weakness and wasting. Eventually, the individual with ALS is left completely immobilized, with loss of speech and eventually an inability to swallow and breathe.
The sensory neurons in people living with ALS continue to function normally so that they will continue to feel the sensations of heat, cold, discomfort etc. The mind often remains completely alert and lucid. The result is often a lively, unimpaired mind trapped in an immobilized body. The average life expectancy from symptom onset is 3 to 5 years.
Hi Guys,
Recently I have been diagnosed with ALS.
Since then I am looking for some alternative medicine via internet,but what I have found only CRAB and CROOKS !
If anybody can help me is a welcomed !
Regards
ilya lordis
email drcraigoster@comcast.net
I had my first doctor appointment March 18, 2014 and was diagnosed with bulbar onset ALS on April 29. The first to go was my speech. My swallow and my legs are in competition to fail me next. I recently fell going down 3 steps and broke both are bones near my wrist. Of course no doctor will operate on a person with ALS and being bulbar makes me obviously ALS. I am leaving my home in Sumterville FL to my son and leaving to live with my daughter in Woodbury MN where there are more ALS resources
I’m wondering what diet you’re on. Like examples please. Also what supplements you are on as well. Thank you for your time.
I was diagnosed August 28 the this year and have changed diet, added supplements and want to show people that I can beat this disease! Or slow it down. Your help would be greatly appreciated! Thank you, Tara
email drcraigoster@comcast.net