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My plan to beat the odds against Lou Gehrig’s disease

The Ice Bucket Challenge has been a dream come true for those of us with ALS. The amount of publicity and awareness generated by this social media phenomenon could not have been purchased at any price. The donations have been huge. Suddenly, ALS is pulled out of the shadows and into the sunlight. A whole new generation, who never heard of Lou Gehrig, now understand what ALS is. I am hopeful that with this increase in funding, a cure will be found and my life may take another turn. Here is my story …

As nurses, we begin our careers with the full understanding that we will deal with new life, broken bodies and death. The focus is on the patient. For me, that meant 37 years in mental health nursing —— the last 10 of those teaching future nurses.

That all came to a screeching halt when, in 2012, I was diagnosed with amyotrophic lateral sclerosis, aka Lou Gehrig’’s disease. I had experienced some leg weakness for several months before the diagnosis was made; the diagnosis can only be done by exclusion. I knew it had to be something neurological, but I never dreamed it could be a disease that strikes only two out of 100,000 individuals. A disease for which, even 75 years after Lou Gehrig’’s famous speech, there is no known cause, no known cure, no effective treatment and an average life expectancy of two to five years.

I don’’t claim to be the only nurse to become seriously ill. Unfortunately, there are many of us. I believe there is a bond among those of us who have peered over the edge into the abyss of our own mortality. The question becomes, “How much of our time will be functional and how much will be under custodial care?”

I have reached the two-year mark. I find myself looking longingly at people who have been fortunate enough to reach their elder years. I listen empathetically to friends describe their ailments. I don’’t begrudge them discussing them, but secretly I wish I had a disease for which there was some treatment, a cure.

Transitioning from the role of caregiver to patient has been particularly difficult. As a nurse, a teacher and a mother of four, I have been accustomed to making plans, giving orders and taking action. I can no longer work or do household chores. I can’’t walk without assistance. I use a walker in my house and a scooter for longer distances. I am on the cusp of losing my ability to stand up independently. This is especially distressing in that once an activity is lost, it cannot be regained.

So what do I do? It is impossible for me to surrender and do nothing, even though currently there is no active treatment to pursue. I guess it is the nurse in me. I have elected to act through advocacy. I talk with interested people, especially others with ALS, in real time on the Web. I promote research, clinical trials and the National ALS registry. I have attended the National ALS Advocacy Day in Washington, D.C., for the past two years. We successfully lobbied our officials to support legislation and funding for ALS research, and I will continue that for as long as I am able. I am in the midst of planning a golf fundraiser with all funds going to ALS Therapy Development Institute for research.

For myself, I work hard to enjoy the present. Mourning my losses is simply not productive. I have learned I have more friends than I ever knew, and I have come to appreciate the basic goodness in strangers. My family is steadfast with me, and I have never in my life felt more loved.

I have learned to focus on what I can do, rather than what I cannot, such as writing this article. I have taken up bridge, a game that uses my mind instead of my body. In the past I was an avid golf and tennis player. Tennis is out of the picture, but I have acquired an adaptive golf cart that allows me to play sitting down. What a treat to be outside on the course again! I hope to play in an upcoming ALS tournament, as well as being the featured speaker. I will play golf until my arms become weakened, too. I am blessed to be a slow progressor. I also have begun voice banking, a process by which I record my voice now so that when I need a computer to talk for me, it will sound like my own voice.

Two out of 100,000 people get ALS. I beat the odds to get this disease. Now I plan to beat the odds of living past the two-to-five-year average. I’’m shooting for 10. Maybe by then, if we raise enough awareness, pass enough legislation and raise enough money for research, there will be a cure in time for me.

Editor’s note: Kennedy suggests that donations for research go to the ALS Therapy Development Institute, which uses 87% of its funds for research, or the Northeast ALS Consortium.

By | 2016-05-20T17:02:59+00:00 August 28th, 2014|Categories: Nurses stories, Your Stories|15 Comments

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15 Comments

  1. Mary Lynn Smith, MSN, RN May 20, 2016 at 7:11 pm - Reply

    Madeline:

    I know how horrible ALS can be. I was the facilitator for the Bloomington-Normal, IL ALS support group. I was also to Care Coordinator for a couple of ALS patients. I think it is terrific that you have the strength of mind to keep your spirits up and keep doing some of the things that you love such as golf. It is my hope and prayer that a cure is soon discovered for ALS so that you and the so many others can continue to enjoy life. Thank you for this lovely, inspirational story.

  2. Claudia Burrows May 21, 2016 at 2:09 am - Reply

    Thank you for sharing your thoughts, Madeline. And thank you for supporting ALS-TDI! I’m also an RN dx’d with ALS. This August I’ll celebrate 11 years since my diagnosis!

  3. Anymous August 13, 2016 at 12:56 pm - Reply

    My names are Michael Brennan… ALS has been ongoing in my family for long..I lost both parents to
    ALS and it is so much pain have not been able to get over. As we all know medically,there is
    no solution or cure for ALS and the cost for Medication is very expensive..Someone introduced me
    to a Herbal man email:(dr.sabiherbscure@gmail.com)(Native Medical Practitioner)in oxford.. I showed
    the man all my Tests and Results and i told him have already diagnosed with ALS and have spent thousands of dollars
    on medication..I said i will like to try him cos someone introduced me to him..He asked me
    sorts of questions and i answered him correctly..To cut the story short,He gave me some medicinal
    soaps and some herbs(have forgot the name he called them) and he thought me how am gonna use them
    all..At first i was skeptical but i just gave it a try..I was on his Medication for 2 weeks and i used all the soaps and herbs according to his prescription.. that he will finish the rest
    himself..and i called him 3 days after, i arrived and i told him what is the next thing..he said,he has
    been expecting my call.. he told me to visit my doctor for another test..Honestly speaking,i never
    believe all he was saying until after the test when my doctor mention the statement that am, also negative
    and the doctor started asking me how do i get cure….Am telling this story to every one of you encase
    you also having same problem you can contact him on his via
    email address: dr.sabiherbscure@gmail.com or call/Whatsapp +2348167257144.

  4. chantellestaff10 April 16, 2018 at 1:17 pm - Reply

    My ALS (amyotrophic lateral sclerosis) symptoms started out with muscle weakness, stiffness and slurred speech. My primary physician prescribed riluzole and radicava to reduce symptoms and slow down the disease progress, I could not take them for long because of the terrible side effects. So i adopted a more natural approach and started on ALS Herbal formula from RICH HERBS FOUNDATION, the ALS natural formula immensely helped my condition, i had a total recovery from ALS with this formula treatment. Their official web-site www. richherbsfoundation. com. I feel so much alive again!

    • Bluedogtaz March 6, 2019 at 5:27 pm - Reply

      chantellestaff10 – since your reply on “nurse.com” have you continued to see recovery of your ALS by using the Rich Herbs Foundation solution. Also how much were the herbs and how long did you take them?

  5. Corrine Gaffin August 21, 2018 at 11:15 am - Reply

    i was diagnosed 2011. i was diagnosed with the bulbar form of ALS and was given one year to live. My symptoms progressed quickly. Soon i was having difficulty breathing, swallowing and even walking short distances. With the help of Natural Herbal Garden natural herbs I have been able to reverse my symptoms using diet, herbs, which i feel has made the most difference. The ALS natural formula immensely helped my condition, it reversed my ALS. my slurred speech. And then the inability to eat without getting choked, breathing, and coughing. gradually disappeared. Visit NATURAL HERBAL GARDENS via their official web-site www. naturalherbalgardens. com. I’m now playing golf again. and i turned 69 today. i am glad to get my life back DON’T GIVE UP HOPE!!!

  6. Alisa Cameron October 4, 2018 at 12:04 pm - Reply

    My husband was diagnosed with ALS (amyotrophic lateral sclerosis) when he was 61 years old 4 years ago. The Rilutek (riluzole) did very little to help him. The medical team did even less. His decline was rapid and devastating. His arms weakened first, then his hands and legs. Last year, a family friend told us about Rich Herbs Foundation (RHF) and their successful ALS TREATMENT, we visited their website www. richherbsfoundation. com and ordered their ALS/MND Formula, i am happy to report the treatment effectively treated and reversed his Amyotrophic Lateral Sclerosis (ALS), he had a major decline in symptoms, he is able to walk and able to ride his treadmill again, he is pretty active.

  7. Alisa Cameron October 5, 2018 at 3:51 am - Reply

    My husband was diagnosed with ALS (amyotrophic lateral sclerosis) when he was 61 years old 4 years ago. The Rilutek (riluzole) did very little to help him. The medical team did even less. His decline was rapid and devastating. His arms weakened first, then his hands and legs. Last year, a family friend told us about Rich Herbs Foundation (RHF) and their successful ALS TREATMENT, we visited their website www. richherbsfoundation. com and ordered their ALS/MND Formula, i am happy to report the treatment effectively treated and reversed his Amyotrophic Lateral Sclerosis (ALS), most of the symptoms stopped, he is able to walk and able to ride his treadmill again, he is pretty active now.

  8. Cora huges November 13, 2018 at 6:10 am - Reply

    I was diagnosed with ALS in May 2008. our doctor put me on riluzole, letting me know there was no cure but the medication might provide me a few more months of delayed symptoms. ALS progresses at different rates and affects different body parts first. me being 62 at the time, fell into a category of what they call “fast progression” (older female). My arms weakened first, then my hands, my mouth, and throat, and finally my lungs. Throughout my two-and-a-half-year ordeal, I  was able to walk with assistance until I was told to use totalcureherbsfoundation.com  herbal formula which helps me get rid of this ALS totally after using it for just 15 weeks treatment plan. The total cure herbal foundation brought me back to life again and terminate all the symptoms.I have a great doctor and a team of wonderful people working at foundation Most of all, my husband! 

  9. corey December 31, 2018 at 9:30 am - Reply

    Am Corey Pollard from Ontario ,My dad was diagnosed with ALS early this year February to be precise , and i was so confused because i love my dad and i wouldn’t want to loose him so soon so i decided to look for a possible solution to get rid of this ALS despite knowing it has no cure as advised by the medical doctor , everyday my dad’s heath depreciate and keeps loosing weight and strength,a friend advised me to try peter wise ALS herbal formula that she used it to cure her dad’s heart disease and i was reluctant about it until after a second thought i decided to give it a try because no harm in trying and immediately i contacted him he assure me that my dad will be cured within few weeks of medication and he sent me the medicine and i applied it on my dad as advised by dr peter wise and within 3 weeks of medication my dad was cured and now my dad is free from ALS , i went to the hospital that said there was no cure to ALS and informed them about my dad’s healing and they were surprised . here is the contact email (peterwiseherbalcenter at gmail. com) and also reach him on hangout or through his whatsapp number via 2349059610643
    Best Regards.
    Corey pollard

  10. Clements Price January 12, 2019 at 6:35 am - Reply

    My Wife was diagnosed with ALS (Lou Gehrig’s Disease) when she was 72 years old 4 years ago. The Rilutek (riluzole) did very little to help her. The medical team did even less. Her decline was rapid and devastating. Her arms weakened first, then her hands and legs. Last year, a family friend told us about Organic Herbal clinic and their successful ALS TREATMENT, we visited their website organicherbalclinic . c o m and ordered their ALS Formula, i am happy to report the treatment effectively treated and reversed her Amyotrophic Lateral Sclerosis (ALS), most of the symptoms stopped, she is able to walk and eat well, sleep well and exercise regularly., she is pretty active now and her attitude is extremely positive.

  11. Luka January 22, 2019 at 9:15 am - Reply

    My first ALS symptom appeared in 2011. 4 years ago I learnt about ALS/MND successful chinese medicine from Rich Herbs Foundation (ww w. richherbsfoundation.c om), the treatment made a tremendous difference for me. Few weeks into the treatment I had improved muscle strength and coordination, improved speech, improved walking balance, increased appetite, improved eyesight and improved mood swings. 4 years since the treatment, i still feel stronger than ever with no symptoms at all, only occasional tingling on my right foot at night. I feel cured from the disease!

  12. Reece Mia January 23, 2019 at 7:21 pm - Reply

    My mother was diagnosed with bulbar ALS in the summer of 2016;Her initial symptoms were quite noticeable. She first experienced weakness in her right arm and her speech and swallowing abilities were profoundly affected. She did little to seek help for this disease, as she had been her brother’s caregiver a few years earlier for the same disease.
    She was able to get rid of the ideas with the help of totalcureherbsfoundation.com herbal formula that cured my Parkinson disease ,this herbal treatment helped my entire family during our worst time in life.
    They exported worldwide and the herbal treatment will get to you in four days delivery to your address.

  13. Clements Price February 14, 2019 at 3:01 am - Reply

    My Wife was diagnosed with ALS (Lou Gehrig’s Disease) when she was 72 years old 4 years ago. The Rilutek (riluzole) did very little to help her. The medical team did even less. Her decline was rapid and devastating. Her arms weakened first, then her hands and legs. Last year, a family friend told us about Organic Herbal clinic and their successful ALS TREATMENT, we visited their website www. organicherbalclinic. com and ordered their ALS Formula, i am happy to report the treatment effectively treated and reversed her Amyotrophic Lateral Sclerosis (ALS), most of the symptoms stopped, she is able to walk and eat well, sleep well and exercise regularly., she is pretty active now and her attitude is extremely positive.

  14. Edwin Amankwah February 26, 2019 at 3:39 pm - Reply

    Herbal health remedies foundation that you can trust for ALS. When he went to herbal health remedies foundation for 3 weeks and they did a cleansing program to get toxins out of his body, when my brother  went home he was on IV vitamins. Then he took out all the mercury filling out of his mouth. Took lots of vitamins etc… what I do know is they gave him 2 years and he lived almost 7 years. I think what made the most difference for him was the AMAZING care he had, he stayed at home with family and friends. “Food for the soul” is what I call it. I miss him so bad. Website:http://herbalhealthremediesfoundation.com

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