I’m So Sick of This

I am sick of beautiful people dying constantly from the horrible disease that is ALS. I wish I could say that this type of message is rare but it’s not. In fact, people with ALS are among the highest users of MAiD (Medical Assistance in Dying). Imagine the sense of hopelessness one must feel to decide to end their life.

ALS is constantly referred to as rare. When you are a part of the community it definitely doesn’t seem rare. At least twice a week I hear the news of another person losing their battle with ALS. When you are not directly impacted these are merely numbers, but when you are, they are so much more. Living with this disease is not for the faint of heart and I am always so amazed by the kindness and resiliency of my fellow warriors. ALS does not discriminate and I know of a wide variety of the population who have been diagnosed; teenagers and young adults just beginning their lives, mothers and fathers of young children and teens, grandparents just starting to enjoy retirement. It’s not right.

I have met pALS (people with ALS) and their families through online forums, Twitter, the patient led advocacy group ALS Action Canada and even at my children’s school. Dave was an incredibly loved music teacher and his kids also attended the school. My son Silas and one of his sons are in the same grade, and when I met Dave they were both on the school volleyball team. Sadly, Dave passed away from ALS last year. I will never forget how kind and thoughtful he was, and how he kept such a sense of humour even in the throes of the disease. He leaves behind a lovely wife and four great kids. ALS causes too much unnecessary suffering for families.

For a disease that has been around for over 150 years and that is 100% fatal you would think that there would at least be some meaningful treatments if not a cure. I would love to see this change, would love to see governments care and act with urgency to fast track promising therapies and provide research funding. Currently there is a lot of apathy in regards to ALS and that needs to change as well. We need action, like with the HIV/Aids epidemic in the 1980’s when the general public and celebrities came together to fight for treatment. The lifetime chance of getting ALS is 1 in 300 and by 2040 the incidence of the disease is projected to increase by 70%. If that doesn’t prompt a call to action I don’t know what will.

Please join the fight by following ALS Action Canada on Twitter or Facebook or by following me on Twitter @leanne_yacyshyn. The more people we can get on board the better.

 

Thanks again for reading,

Leanne xo

12 thoughts on “I’m So Sick of This

  1. Leanne I always follow your posts. I pray for you and all ALS patients. My sister in-law has ALS. She is now on a ventilator 24/7. Her husband, my brother quit his job to take care of her. He couldn’t afford to quit his job but he had to and he says his wife is more important than anything else. Well just learned my sister in-law has ovarian cancer also. She had one round of chemo but not working. Chemo caused ALS to be worse. It breaks my heart how this deadly disease has not been a priority for the FDA to approve the trial medications for all ALS patients so they can have a longer life. Thank you for your posts Leanne and I hope these meds get approved soon. I always sign the petitions. You inspire me .

  2. You are absolutely right, Leanne. We need a massive increase in attention and funding to understand and cure ALS. I, too, know of pALS dying every day. It’s too much to take.

  3. You are absolutely right, Leanne. We need a massive increase in attention and funding to understand and cure ALS . I, too, know of pALS dying every day. It’s too much to take.

    1. ALS seems rare because the life expectancy is so low. I ponder the question ‘how do we get the general public to care?’ so often. Stay strong Jessie.

  4. It pains me to no end what your going through and what everyone is going through who has ALS.

    I appreciate you always advocating for the community and a cure.

    I hope we can gain traction getting the governments urgent attention to help find the cure and to administer and make available in a timely manner helpful treatments.

    I love you Leanne. I am always here for you. Prayers

  5. You have my support Leanne, will go on the ALS website on Facebook and do what I can to share and get attention in this matter
    God keep you strong to be the advocate this disease needs

  6. Hi Leanne I recently stumbled upon your blog and am amazed at how inspiring you are for posting your journey. I’m 20 years old and my mom passed away from ALS but this warms my heart so much that you are sharing knowledge and hope with others. You’re not in this alone and I’m so amazed and proud of how strong you are! Sending so much love <3

  7. One of my closest friends was diagnosed with ALS December 2018. And an acquaintance back in 2013. Neither of them wanted their lives extended via intubation, but neither choose MAiD either.

    Frankly, I support the will of everyone to make the choice that works best for their own lives and values, whether it’s in response to cancer or a neurological disease.

    I’m as awed by someone who chooses a trach and nursing home to carve out their happiness as I am in someone who decides to untie from this earth surrounded by loved ones.

    I wish we could all be lucky enough to have options.

    Wishing you best.

  8. ALS is a cruel disease. My mum is 83 and had great difficulty speaking and swallowing much of anything. Food was getting trapped in her throat and blocking her air way was happening more often. she battled for each breath. The riluzole did very little to help her. The medical team did even less. Her decline was rapid and devastating. The psychological support from the medical centre was non-existent and if it were not for the sensitive care and attention of our primary physician, there she would have died. There has been little if any progress in finding a cure or reliable treatment. Acupuncture eased her anxiety a bit. this year our primary physician started her on Natural Herbs Centre ALS/MND Ayurvedic treatment, 6 months into treatment she improved dramatically. It has been a complete turnaround with her speech, she no longer needs the feeding tube to feed, the treatment is a miracle. She recovered significantly! Visit Naturalherbscentre

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