May is ALS Awareness Month Every day, I think “I should post something today”. But there is nothing new to say. Nothing has changed since Mary’s diagnosis in December 2013. No diagnostic breakthroughs.No breakthrough treatments.No promising trials – every single trial has ended up back on the drawing board.No cure.Just more people diagnosed. Every. Single. Day.I just saw a 5-year-old was diagnosed. We found 3 vaccines for COVID-19 in 10 months. If only drug companies and researchers would work together on ALS, just imagine what they might be able to do with the right funding in 10 months?
Its ALS awareness month. ALS is 100% fatal. There are no cures and only one drug which may or may not extend life by a couple of months. I thought for a couple of days on how I want to seek awareness.
I decided that sharing the facts would be best and sharing that discrimination is not part of this fatal disease. It hits all ages, different ethnicities and can be passed down to several family members.
I have seen a young lady in her 20’s sitting at clinic instead of college, I have known young mothers, young fathers, a mother fighting ALS…who’s own son has been diagnosed. I know a women who has lost her mother, two brothers, two sisters and a aunt. I have watched small children say goodbye to one of their parents.
Although it usually strikes around age 55, doctors report that patients seem to be getting younger, for reasons they don’t understand. They’re increasingly encountering ALS patients in their twenties, thirties, even in their late teens.
I have known family members who may never recover from the battle with this grueling disease. I have known families who are financially devastated.
The facts are… there’s very little assistance for families with this disease, research is being done but yet the rates of ALS are continuing to climb and the ages are getting younger. I personally know the struggles this devastating disease causes.
The odds have increased. You will know someone with this disease. Can it be your family, your children, wife, husband, or friend? It did mine and I had no clue what this disease was.
You say what can I do? You can make awareness count buy sharing, by donating to research, by reaching out to those who are suffering and by signing laws into place to help these families and to help research. This is a disease that’s has spent a long time in the shadows just waiting for a break through.
Thank you for loving me enough to read this post.
Posted by permission of the author. One picture added to original post.
In the last 5 1/2 years, I have gained intimate awareness of ALS, so much so that it is now on my resume. Six years ago I would never have imagined that I would be comfortable changing the inner cannula of a trach, changing out a Mic-key button PEG tube, using an ambu bag, dialing 911 while frantically holding a face mask to my wife’s face to keep her breathing, making – literally – life and death decisions on an hourly basis. I would never have imagined the torture a body can experience, or imagined it would happen right in front of me over such a short period of time.
In the last 5 1/2 years, I have known hundreds of other spouses who cared for their partners through the devastation of ALS, and we have supported each other through our journeys while living with ALS and on the “other side” as we surviving spouses refer to it.
The ravages of ALS don’t end with the death of the person with ALS. They continue to haunt those of us on the other side, making it hard for us to trust anyone, to share what we experienced, because we spent so long hiding our vulnerability, keeping on a mask for our loved ones while crying and screaming in secret. While we lived with and tried to fight ALS, we didn’t share details with family members and friends – how could we? I didn’t want to burden my children, my parents, my friends with the fear, the anger, the horrors of what was required to care for my beloved, especially near the end. It is hard to imagine anyone understanding our journey except those who have also experienced it first-hand.
May is ALS Awareness Month. Again.
We are no closer to a cure, despite what you may hear and see out there.
Insurance companies are still denying medications, support services, equipment and in-home care services to people with ALS. How do you make someone with a terminal illness suffer even more? How do you not provide comfort care?
People are still choosing to bring their ALS journey to an end by refusing food and water, by removing their bi-pap and suffering for days, or by gunshot, because their states and/or providers will not ease their passing with common hospice-approved medications. The “opiod crisis” is creating horrible end-of-life experiences for those who have already been through so much. And their souses are left with severe PTSD (I do not use that term lightly), flashbacks and survivor’s guilt. As if we could possibly have done even more than we did.
ALS is not pretty. It is not a movie. It is not an easy thing to talk about. But we must talk about it, talk about the horrors, if we are ever to see funds supporting research to effectively diagnose, treat the symptoms, and one day find a cure.
And so I will be posting this month. I cannot guarantee it will be daily. I cannot guarantee it will be something I haven’t posted about before. Because even 5 1/2 years after my wife’s diagnosis, there are experiences and knowledge to share. Because even 3 1/2 years after my wife died, there are things that I need to say over and over again. Because I promised her that after she was gone, I would continue to fight for everyone else.
This page was born out of our experience of supporting our loved ones through living and dying with ALS/MND. Our goal is that this will be a place of support and healing, of positivity and inspiration for those who walk this journey, with the belief that ALS never wins – Love Always Wins!
