The Quad Queen has ALS

I've been dreading writing this post for a very long time.

This blog, as you know it, is going to take a left turn. I won't be writing about Vegas trips, but I will be writing about another slice of real life, our lives as they now present themselves, and the challenges therein.

In March 2022, Karen developed symptoms in the fingers on her right hand - she found she couldn't hold a pen.

By summer, it had gotten worse, and by August she showed symptoms of ALS - Amyotrophic lateral sclerosis. Also known as Lou Gehrig's disease, and as MND abroad.

By September we were pretty sure that that's what it was and we saw a neurologist on Hallowe'en of all days who confirmed that it was the most likely candidate.

Over the winter, her hand and arm got worse and her right foot dropped - the muscles holding the toe up couldn't activate anymore.

We spent many hours grieving the losses we were having, and the losses to come. We'd only just started our retirement and had everything the way we wanted it. It lasted only 9 months for me before this started.

Karen developed a limp and we started to have to give up activities. She had a number of falls, but fortunately no injuries.

In Vegas, her mobility was quite limited. We walked slowly, and she needed to rest often. The worst thing of all was she couldn't play video poker the way she always has. Fast, and with two hands. She had to do all the button pushes with her left hand and I actually think this affected her success.

By the time we returned home to Flusherville in April 2023, Karen could barely, barely make it up the half flight of stairs. I had to hold her butt from behind to help lift and make sure she didn't tumble. It would be the last time she ever uses stairs.

In May 2023, the diagnosis was confirmed - Karen has ALS.

What is ALS? 

"ALS is a fatal motor neuron disease. It is characterized by progressive degeneration of nerve cells in the spinal cord and brain. ALS affects voluntary control of arms and legs, and leads to trouble breathing. ALS does not affect intelligence, thinking, seeing, or hearing. There is no known cure for ALS."

At this writing, the disease has progressed significantly.

Karen can't walk. Her right arm and hand are useless, and her left arm and hand have about 15% of their functionality left.

My days are very busy taking care of her. I get her out of bed in the morning using a lift on loan from the ALS Canada, I move her around the house, onto and off of a commode, and put her to bed at night.

Basically, everything a person typically does for themselves, from shopping to cooking to laundry to toothbrushing to toileting to bartending, she has to have someone do for her.

Much of my time and efforts have centered around dealing with the next phase of the disease. Getting walkers, bath benches, hand holds, stair lifts, removing doors, getting people in, fighting for more aide coverage, and so on. And mountains of paperwork to apply for permits, programs, prescriptions, tax status, disability status and so on.

So I apologize for taking a full 7 months to write up the last trip report - but I'm sure you understand.

The Quad Queen does not want to face winter here in Canada, so we are going to try to get to Florida again for the winter, which poses a whole new set of challenges to be overcome.

Fortunately, she has the best possible attitude about ALS, and she's a fighter. There is no quit in her.

As for me, I'm pretty ground down. My day starts at 7:00 am and I'm running till 11:00 pm seven days a week. We have two one-hour visits from home health aides (or PSWs in Canada) a day, and I get 4 hours a week of respite.

And we have a therapy dog and his volunteer owner come in once a week or so for 4 hours so I can get out of the house. But the rest of it is all on my shoulders. So it keeps me busy. It's a good thing I'm a decent cook.

Going forward, I plan to blog about all of this, and I hope you will stay with me.

In addition, I have to reach out and ask for help. ALS is an extremely costly disease. Specialized medical equipment and supplies are through the roof. And I really, really need more hours of aide coverage to help Karen, and give me a breather.

To this end please consider supporting Karen's gofundme, or support us directly by donating right here on the blog.

Feb 26, 2024. Karen succumbed to ALS in November of 2023. We received an incredible amount of support and we were touched by the people's generosity and the stories they shared with us of how their lives have been touched by life's trials and losses. The gofundme served its purpose with flying colours and is closed.

It wouldn't be a Royal Flusher post without some unwanted sage advice, but here goes.

In life, take nothing for granted. It never goes as planned. Don't wait. Don't wait for that hoop to be jumped through or for things in your life to be perfect. Hug that person, tell them that you love them, take that trip, learn that skill, spend that time with friends.

The rug can be pulled out just like that. For you, I pray that this will not be the case. For us, it's already happened, and we are incredibly thankful for the years we've had together, and we do not regret some sixty plus Vegas vacations in any way shape or form.