Shannon ( Mosser ) Williams’s Battle with ALS

My ALS Fight with Dignity and Grace

 

January 23, 2018 – A day forever engrained in my mind.

I was enjoying my 50’s when a diagnosis of ALS blindsided me. A degenerative neuromuscular disease, also known as Lou Gehrig’s Disease, weakens the muscles throughout the body and impacts physical function. An incurable disease that will take your body away from you, piece by piece.

 

To say I was shocked would be an understatement. I was young, and I was excelling as a caregiver in a local nursing home. I had two sons in high school who were just starting to make their mark on this world. Not to mention, I had already beaten colon cancer. I was diagnosed with colon cancer in 2008 and had undergone surgery on January 21, 2010 followed by 12 intense rounds of chemo. Finally, I became cancer free in July 2010 and felt on top of the world, until it all came crashing down.

 

In Sickness and In Health – I married the love of my life, Bugsy Williams, on November 22, 1997.

As one might imagine, I experienced a wide range of emotions from disbelief and depression to anger and guilt. All of those feelings reeled in my mind as I began to comprehend the realities of this absolute shit diagnosis. And then it hit me, Bugsy didn’t sign up for this either. When Bugsy proposed, it was because he believed I was his soul mate, and as a married couple we would add balance to each other’s life. My diagnosis shattered the idea of a balanced partnership. And as we discussed the impact of our future together, and cried – a lot – it was clear that from this day forward, we would be anything but balanced.

 

 

Despite all of the challenges and unknowns Bugsy was all-in, as both husband and caregiver, making that decision without hesitation.

 

The biggest question that haunted me following my diagnosis, “how was I going to tell my beautiful children?”

At the time of my diagnosis my oldest son Dalzel was about to have his 18th birthday and my youngest son Brandon was 15 years old. The emotions I felt that day will be forever burned in my mind. Words could never describe how difficult this conversation was, so I won't attempt to try an explain it. Just thinking back to that day brings me to tears.

 

Embracing OUR new normal

Over the course of the first 6 months following my diagnosis, acceptance was difficult. Anyone who knows me well, knows I tend to offer help more than I ask for it, so this new dynamic has been an adjustment for all of us. Our vision of the future has changed. Beyond adapting our daily routine to fit our new normal, we have had to come to terms with the long-lasting impact.

 

We take new symptoms as they come, begrudgingly, but accept that as our new baseline.

 

So, this is my story, as of today. I am writing this to raise awareness for ALS and the reality of this baffling disease, and to highlight that the disease affects families, not just patients. Most importantly, I am sharing my story to honor my husband Bugsy and our two beautiful sons Dalzel and Brandon. My family is my army in our fight against ALS.

 

The silver-lining with an ALS diagnosis is that it does not affect your brain. Which brings me to the purpose of this go-fund me page. What most people don’t know is the other name for ALS, aside from Lou Gehrig’s Disease, is the “bankruptcy disease”. The average annual cost of care for ALS ranges from $78,000 - $200,000 and varies depending on the stage of the illness.

 

I am truly blessed that my husband and children have been by my side every step of the way. As my disease progresses, it is becoming more difficult for them to care for me in our home. Any funds raised will help with the following expenses:

 

• Completing a Wheelchair Accessible Bathroom Addition to our home ($55,000). The current bathroom is 6ft wide by 71/2ft deep which is not enough space for my wheelchair. For this reason, I am limited to the use of a bedpan inside my home.

• Therapies

• Medical Expenses (EMG, CAT Scan, MRI, Spinal Tap, Bloodwork)

• Medications

• When the time comes, in-home care

 

Very few, if any of the available therapy and treatment options are covered by insurance, and when added up the costs are astronomical. I would love to become one of the miracle ALS patients who have been able to reverse their symptoms. Realistically, I am hoping to find the right combination of therapies and treatments that will allow me to see my two beautiful sons get married and start families of their own.

All donations will go toward helping me fight this disease with grace and dignity. If you are not able to donate, sharing this link with friends, family, and social media outlets will be greatly appreciated.

 

Shannon