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    Thursday, September 21, 2023

    The New World

    The Quad Queen and I are living in a new world of sorts, a strange unexpected one that has required endless adjustments and adaptations.

    And, as such, the blog is now morphing and changing, because I plan to write about our everyday happenings, struggles, and triumphs.

    By August 2022, we had it figured out - Karen 99% had ALS. When she started limping last fall, we knew what was coming, sort of, but didn't know what the reality would truly be like. How would we cope? What would happen?

    My first inclination was that we should sell the mobile home in Florida so that we could preserve as much of our retirement fund as possible for future unknown needs, but the Quad Queen quickly vetoed that.

    "I would rather perish than face another winter in Canada," she said. "And you need it too, you hate winter, and you get massive depression when you're out of the sunlight."

    And just like that, my mindset changed. We would live life on our terms as much as possible, and screw ALS.

    When nothing else is on, you watch mindbending videos.

    Additionally, we started to measure things not in years, months, or weeks, but days. At the end of each day the conversation was 'Did you have a good day today' and usually, the answer was yes. And we still look at it that way and are thankful every day we have a good day or even an okay day.

    And this also explains why we went to Vegas 3 times last winter - we knew it would probably be Karen's last trips during which she was able to walk. That has now become true.

    So what is life like right now for the Flushers, dealing with this disease?

    Well, in April, Karen fought her way up the stairs into the house. I had to push her from behind, holding her ass (which I didn't mind) and making sure she didn't fall. It was horrifying and scary, but we made it.

    That would be the last time she ever walked up some stairs.

    Limping along, and occasionally falling gave way to her holding my arm, which gave way to a walker, which gave way to a wheelchair.

    There is no cure for ALS, and precious few medications available - i.e. 4 of them. They slow down the disease (hopefully), but nothing stops it.

    I am happy to report that Karen started on Riluzole last week and she's tolerating it well.

    And she is on track to receive the brand new one called Albrioza in Canada, Relyvrio in the US. It's incredibly expensive - like $150,000 USD a year expensive - but it looks like we may be able to get it covered thanks to an agreement with the maker and the Canadian government. We are hopeful she'll get this medication.

    A thing called a Hoyer lift is what makes all this work now. There's a sling that I put on her, and it gets attached to the lift. It's bed to commode, commode to wheelchair, back to commode as many times as is needed in a day, and finally back to beddy-byes again.

    TV has become a primary source of entertainment, that's for sure.

    Karen in the Hoyer Lift. Of course, I get the remote.

    A couple of months ago, she opted for a catheter, so that minimizes bathroom trips.

    I hope this isn't too much detail, or too depressing - but it's what we are living day in and day out.

    And yet, the woman is still laughing, still smiling, still joking. Sometimes we make horrible dark jokes about her condition, and it's part of how we cope.

    Facemask fitting for a bi-pap, which she doesn't need yet thankfully. But you need to stay a step ahead of ALS.

    Since we got home last April, I've been extremely busy, with a million things to plan, with all the household things, cooking for both of us, and of course the most important thing, taking care of all of Karen's needs. That's why the last trip report took 6 months to complete.

    The woman is well fed, I can assure you!

    Let me give you a break here and we'll talk about the uplifting part of all this.

    We hadn't thought too carefully about doing a fundraiser, but it was in the back of our minds. But as the Quad Queen's condition has worsened, it became clear that I could not keep up the level of care she requires, and still keep my head above water.

    We get a couple of 1 hour home health aide visits a day, paid for by the government, but lately, there have been many, many no-shows, due to staffing issues, and to people phoning in sick or whatever. When I'm left to do everything on my own, I get really tired out.

    When we go to Florida, there won't be any paid for help.

    It became obvious that we needed to hire additional support. And that takes dough. Lots of dough.

    So, we launched a gofundme last week to help pay for care, and other equipment needs.


    Wow wow wow.

    The outpouring of caring messages, and the 120 individual donations to the gofundme has been emotionally overwhelming. It has really lifted our spirits.

    So many long-time readers of the Royal Flusher blog have come out of the woodwork to say, hey, I'm so and so, I've been reading for years, and I support you and Karen.

    Bobby G is running a livestream on Saturday Sept 23 and 7 pm Eastern, 4 pm Vegas time, with a number of special Vegas vlogger guests, and with both Flushiepants and the Quad Queen. Be sure to watch!

    And, Vegas Bebe is working on something too to help us out. Stay tuned for updates on that.

    Anyway, thank you to all of you that have reached out and supported us. I've tried to make sure every donor gets a special thank you from either Divana (who is doing a stellar job of managing a lot of the gofundme communications and updates), me, or both in many cases.

    If I missed you, it's by mistake - thank you from the bottom of my heart for your caring and support.


    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.

    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.

    Goodbye Las Vegas

    Saturday Feb 25, 2023 and it was time to return to Florida.

    You know the drill, it's time to pack everything up, and get your ass to the airport.

    The trip is over.

    We jumped through all the hoops, and got onto the plane.

    I felt a deep sadness as we took off and held Mrs. Flusher's hand.

    You might be wondering why it took 7 months to write this adventure of Royal Flusher and the Quad Queen, and why we've come out of hiding.

    It's because I think it will be the last such trip report ever.

    Things are not at all well in our household, and now it's time to start a new chapter.

    I mentioned at the start of this that the Quad Queen was having some neuromuscular issues, and from August 2022 we were pretty sure that it was something bad - really bad.

    All of her symptoms fit ALS or Lou Gehrig's Disease, or MND as it's called abroad. 

    More on this in the next post.

    American Business Class treated us fairly well, and we made it back to Florida okay, wishing that this trip had been better but still grateful that we were able to do it.

    It's been a long road as Royal Flusher since my first usenet posts under the name in the early 1990s.

    Thank you for reading, thank you for your comments, thank you for your support, thank you for you loyalty.


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