Day of Diagnosis

We had suspected the worst for months- Mentally denying what we knew was coming

Knowing something was very wrong

Only to be told by “experts in white coats”-

“No- you absolutely do not have ALS”

But, nothing worked and the symptoms kept progressing -

Our initial visit with speech therapist advice- “Start recording his voice now before the ability to speak is lost”

Dr said no worries - plenty of time for that…

Second opinion could not happen quickly enough- time slips by and those recordings never had a chance to exist

Bulbar ALS skips the beginning symptoms and starts in ruthlessly and heartlessly at the end.

My Love went from a 6’2 Blue Eyed Confident Cowboy to a skeletal shadow

His neck couldn’t support his head

The day of the feeding tube was one of the hardest and most heartbreaking of events this demon disease cursed us with

He told me that he was only getting it for me because he didn’t want to leave me and it might buy time for a cure

I think we both knew deep down the way this was going to end and that we were powerless to stop out or slow it down!

In Happier Times he had the gift of gab - he could get a rock to have a great conversation- his confident manner and speech along with ever present laughter rang through the halls of our home.

Until it didn’t.

We would just hold each other in the living room.

He would tell me he didn’t want to leave me with eyes full of tears while I would cling to him as my tears flowed and say I did not want to be left….

The hardest thing to come to terms with was NO CURE.

Your mind rebels against that thought - trying to quash it, eradicate it, defy the reality of what is coming.

Just like a human can’t stop trying to defy the odds in life- it becomes a life or death obsession

The day of diagnosis was in the first week of September

He fell into the sleep of no more suffering 5 days before our 20th Anniversary the following June

You learn quickly to be so very very thankful for seemingly small things-

The kind and understanding Hospice workers doing everything they can to help navigate the devastation and demolition of the future you once had planned

The notes he wrote me when he could no longer speak - each one is its own treasure to hold and cherish

Cards, photographs, dear friends (old and new), and relief he is no longer suffering

Music remained excellent medication for the mind

He no longer remains aware of the life that was being stolen from him and from us every day- our cosy cabin retirement haven of escape with land he claimed just for us

So many to thank and so much appreciation to show -ALS support chapters, Dr’s, Therapists, Hopice, Family & Friends

All have assisted me is putting one foot in front of the other- stringing hours into days into years

Never once forgetting my Husband’s strength, courage, and determination to be as present for me as I was for him.

If you, a friend, or loved one is dealing with this diagnosis

You are not alone no matter if you are the patient or caregiver

Reach out your hand and one of us who has gone before will be there to clasp it and help in whatever way we can….

Things will never ever be “normal” again -

ALS leaves deep angry scars always way too close to the surface…