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Thursday, September 14, 2023

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.


    1. Really sorry to hear this RF. When stuff like this happens we're forced to appreciate the good things we have had, and still do, in our lives. We recently lost my uncle quite suddenly... you don't know how much time you have. It's been a rough year for more than a couple people I know. You and Karen will be in our thoughts and know you have our support always! -jm

    2. I don't know what to say other than that I am praying for you both. It is inspiring to hear about her attitude, as well as how you're hanging in there with everything now that's on your plate. Hang in there, Flusher, and much love to the QQ.

    3. I am heartbroken for you and your wife. I have been following your escapades for over a decade. Your blogging has let me live vicariously through you. I haven't been to Vegas since before I got married, in 2013. I have never commented on a post, but now I feel like I owe it to you. You once commented on an image I posted of the last call at one of my best friends weddings and I was legitimately starstruck. You and your wife have brought a lot of joy to more people than you know. Now it's our turn to support you. We are here and I'm sure we will all contribute what we can.

    4. My heart is broken for you and your wife. We always think we have more time to do the things we want to do. Please take care of yourself, if you get run down it won't be good. Take breaks when you can. Check with your insurance and see if they will book a home health aide in Florida for you, or if you pay privately, will they reimburse you since it's a medical expense. You will be in my thoughts, I have been in your seat, and it's very hard.

    5. I don't comment much but have been reading your posts for years. I am so very sorry. Hugs and positive energy.

    6. Royal, this news is so painful and sad. I pray for both of you and Godspeed. I'm in LV next week and my first drink will be to both of you! You will be in my thoughts..

    7. Just sent you two Four Aces donations. If you add up all the hours I’ve spent laughing, sobbing, and whooping at your blog, it’s probably less than minimum wage. Wishing you all the best. MP

      1. Thanks so much Math Poindexter, you've been with us for a very long time. I always looked forward to your comments. Thanks again, it's so much appreciated!

    8. So very sorry about this, but it has a familiar ring. My wife also has a neurological disease - Neuromyelitis Optica, or Devic's Disease. For the last 8 years I've been her caregiver - she's paraplegic and pretty much confined to bed. I do everything for her and around the house, and I am very familiar with the exhaustion and frustration of neverending days and too short nights.

      For all of that time I eagerly looked forward to your posts and lived vicariously through them. I love Las Vegas but haven't been there since 2010 - your writing has always been interesting and engaging and I could feel the joy you were experiencing, even after the worst losses and bad experiences. I'll miss that, but your archive is still here, and I'll still be following you as you go down this new path.

      Shared pain is lessened, and shared joy increased. I'll be here if you need someone to vent to, cause I've been there, brother, and I want to help.

      1. I'm sorry to hear about your wife. It must be difficult to get through 8 years of relentless duties. It's only been quite heavy for me this summer and you describe it well - neverending days and too short nights. I hope you get some support and respite, and I'm glad I was able to provide an escape during this time. I only wish I could keep doing trip reports for you. Thanks so much for your comment and sharing your burden.

    9. Wow Flusher. So very sad. Prayers for your family and lots of loco moco for your wife.

    10. Prayers for your family and lots of Loco Moco in your future. We'll be watching from afar.

    11. I am so very sorry to hear, Flusher. Keeping you and the Quad Queen in my thoughts. Being a caretaker is tough work on so many levels — emotionally, physically, and every other way. You are a good husband and a good person. Take care.

    12. It saddens me greatly to read of this news. It might be helpful to read about, and maybe contact this amazing woman with the same disease.


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