I really didn’t want to write this episode to be honest. I know I make jokes and it’s always been important to me to laugh at life, especially the difficult stuff. It helps me to pause and really evaluate my situation. Am I in danger? Am I injured? Maybe I’m just embarrassed. Humor also allows others to do the same. To reevaluate and to relax if possible. You see, in almost every situation, I’m the first to know if 9 1 1 is the right call, and I’m not afraid to make that call. But if everything is ok, and deserves a laugh, I’m quick to lead the way with a laugh, a smile or a wink. My team works hard for me and they care deeply, I know that and I want to let them off the hook as quickly as possible. Ya know? Of course you know!
Actually, the bathroom Episode is long overdue. My top three locations of where I spend my time, in order, are wheelchair, bed and bathroom. If this doesn’t turn into a two part episode, nothing will. For pALS, a well equipped bathroom and knowledge of the problems on the horizon are crucial for maintaining a high quality of life at home. As the opening of the podcast says, we’re going to slog through the blood, piss and shit, together. ALS demands bodily fluids as a sacrifice, whether you like it or not. Farting from the hoyar sling is just the beginning. You can clench your butt cheeks together until your face turns red but the day is coming when you will let loose at eye level. If you don’t laugh, it’s all tears from here. Ya know? Hmmm? Are you laughing yet? Hmm? Ha ha ha!
Probably the real reason for not discussing bathroom stuff sooner is that I really hadn’t lived through it all. Until today. I’m sure I have some unknown adventures ahead of me, but I feel pretty confident that I now have my shit together enough to drop this episode. Ha ha ha ha! Oh, this is going to be wonderfully bad. Yet, I feel that it needs to be done, for the greater good and all. Ya know? Hmmm? Of course you do! So here we go! Ha ha.
Oh, the places you’ll go! My wife gave me that book by Dr. Seuss before we were married, right after I was accepted to culinary school and I cherish it. It’s a little corny but the premise is timeless; life is an adventure and it’s a great big world out there. So, apologies to the Dr. but I’m sure he would chuckle at my twist. Maybe? Hmmm?
The first time I needed help in the bathroom i was in the shower. I had recently remodeled my bathroom because, ALS. I had a shower chair that I was sitting in and two things happened at the same time. I could no longer hold my shower brush and had dropped it. And I realized that I couldn’t stand up from the chair. Couldn’t turn off the water. Couldn’t grab my towel. Yup. I sat there pondering just how screwed I was at the moment. I had gone to great lengths and cost to remain independent. It was almost impossible for me to fall, and if I did fall it would be more of a controlled sliding down the wall. This was what my stubbornness and smarts got me. Door closed and partially blocked by my rollator. Fleetwood Mac up loud so nobody could hear me yelling. I sat there and I started to cry. I was so angry and defeated at that moment. A little scared too. The reality of what cruelty lay before me was too much. So I just sat and sobbed. Probably long overdue anyway. Ya know? Eventually Nickey knocked on the door to check on me. Thank God for her! I had to admit my defeat. My shame. Big man falls hard, my inner voice
mocked. Nicky pulled back the shower curtain and I sat there, head down, water running cold, naked, exhausted. Between the two of us we managed to get me seated on my rollator and to my room. Dried, dressed and back in bed. ALS had won the day before it really even started.
That little story was the beginning of a whole new way of life for me and everyone around me. A life that none of us asked for. How much longer I live and the quality of life I have is largely up to the patience and generosity of others. There’s not a very long line of people who are willing to wipe my ass, but the line was surprisingly longer than I expected. First though, I bought a bidet. Yep! A Power shower for my backside with a heated seat, remote control and a night light. Ha ha ha! This worked pretty well for months in delaying having to ask the question that shall not be asked! My bidet even had a dryer. No. I don’t remember what kind it was but I found it on amazon for about $400. And before you say thate is expensive ask yourself this, how much would you pay to not wipe someone else’s butt pay to not wipe someone else’s butt? I bet it’s a lot more than $400. Probably a lot more if you’re being honest. Ya know? Damn right you know. So step up and get the bidet. You’re welcome. Hmmm.
Safety first! We’ve all heard it, all said it, but with ALS and being the stubborn people we are, it’s also an important truth. Fighting back against ALS isn’t a t- shirt cliche and I have the scars to prove it. In my attempts to remain independent and on the move I have been burned, bruised, cut and embarrassed. I have staples and stitches. CT’s and x-rays. Two ambulance rides, three calls for non emergency assistance, lifted by hoyar sling, and propped up by friends numerous times. I probably should have had a helmet and bubble wrap. Others probably think I should have stayed home and I get that, but that’s just not my style. Life is for the living. And you wouldn’t listen to a podcast about a guy sitting in his chair. Right? So you do you and I will do me. Enough said. Now, where was I? Hmmm?
Safety first! One of my first investments was side rails for my toilet. I have two u shaped safety bars, one on each side of the toilet. They fold up and out of the way when normal people are around. They provide something to lean on when standing. Something to push against when sitting, and safety from leaning too far to the side. I think they were about $70 each from Amazon. Be sure to mount them properly into a stud, at the very least so they are secure. Hmmm? Safety bars in the shower are also a must have to avoid slipping but if you need shower bars you probably need a shower chair. Of course you should consult your occupational therapy expert. Ya know? Of course you do.
A shower chair is pretty inexpensive and your local ALSA loan closet can probably help you find one. There are much more expensive versions and you will need to upgrade as your body gets weaker. Some cost $2000, so keep an eye out for things like that you will need in the future and stick it in the garage. My current shower chair is probably better than some wheelchairs. It rolls, tilts and adjusts to be safe and comfortable. I also use it to get in and out of the pool. Hmmm?
A big challenge, one that is Probably holding many pALS from being out in public, is public restroom access. In most places, bathroom access just isn’t easy. Rarely can I find a family restroom, so it’s a choice between the men’s or the women’s restroom. I tend to prefer the men’s
room because its generally easier to navigate but we’ve used both. Just getting to a restroom can be difficult. Oftentimes the path is blocked or the turn is too tight. I’ve seen restrooms used as storage or overfilled with decorations. A few times, when I was more independent, I was locked in the bathroom because the door was too heavy and I couldn’t open it. I would sit patiently and wait for someone to come in to escape. Once when I was trapped, I was at brunch with friends and enjoying a few libations. Needless to say my friends were distracted. Ha ha ha. I pulled out my phone to text for help and immediately dropped it on the floor, out of reach. I might as well have dropped it into the grand canyon. So I sat there and looked at my reflection, which I avoid, and once again chuckled at the ridiculousness of my situation. I can’t really get angry because I put myself in these positions but I definitely have a different view of the world, being in a wheelchair. Wheelchair users are incredibly disrespected. Probably an episode and topic for a different day. Ya know? Hmmm?
The second half of the problem? We all know that public restrooms are frequently disgusting. Some people have questionable hygiene habits. Some are just arrogant and rude and, of course, no one wants to clean up after others. Sitting in a wheelchair only highlights these realities and makes using public potties unpleasant at a minimum. I understand the realities of being in public and I’m not really complaining. It’s all just a new paradigm and I’m good at being able to shift. It’s one of my superpowers. That and I’ve dug a privy and hung off a branch in the forest, more than once. Ha ha ha! ALS will never be able to take my dignity. I have clawed it back way too many times to count anyway. Hmmm!
Staying home is not something I’m willing to do. Catheters are always an option but the choices are a tube pushed up the urethra or a condom catheter which is a condom, tubing and bag. Neither are exciting as you can imagine. The last choice, and the one I prefer is to carry a portable urinal and get an assist from a buddy. I have a urinal in my backpack and I always have the pack with me. I do try to be mindful and discreet but, when you gotta go, you gotta go. Ya know?
There have been many races to find the restroom in a store or to get back to the van because we forgot the backpack. Vanessa once said, as I openly peed in a parking lot, Well, there goes my dignity. At the time, I was bothered by her statement. Was I pushing too far or being overly cavalier? Yep. Probably. Since then, we’ve all adopted the philosophy of Those that matter don’t mind, and those that mind don’t matter. I try to be respectful and check my surroundings but that’s about it. Over the last three years I have peed everywhere, and into everything both figuratively and literally. It’s just part of the program unfortunately. Respect can not be taken, dignity can only be given away. Hmmm.
So what other tools do I have in my toiletry kit? I’m glad you asked! An electric toothbrush is a must as is impeccable oral hygiene. I truly believe that the gut brain connection is real, magnifies ALS symptoms and progression and begins in the mouth. It’s also important to stay kissable. And believe you me; you never know when someone might want to give you a kiss! Ha! I go to the dentist quarterly, if only to see Bruno. If you know, you know!
One of my favorite and first investments into my survival is the aptly named booger sucker. I don’t remember who gave me this idea but it’s definitely not mine, I wish it was. I’m pretty sure I found it on Amazon and I’ll post the link on my soon to be live website, as soon as I find it. But It’s exactly what it sounds like. It’s a nose vacuum for babies and now, you. It has three speeds and it will even play a soothing lullaby, , while someone jams it up your schnozz to suck your mocolls out. Ha hahaha! I hope you’re having as much fun listening to this as I’m having writing it. Ah dios mio! But it feels so, so good. You see, the last thing ALS takes, for most anyway, is the ability to breathe and that means I can’t blow my nose. Keeping my sinuses clean and clear is crucial to managing my goal of not getting pneumonia and not dying. Having clear sinuses and a clean mouth helps to prevent mucus and drooling and, hopefully, choking. The booger sucker is the oldest ALS tool that I own. The fear is real. Hmmm? Yeah. Sometimes it gets very real. Hmmm?
I think that’s about enough from Funkle Scott for one episode. I got a good couple of giggles from this show and I’m already thinking about when I should drop Oh, the places you’ll go, number two.
Until next time, and say it loud for the people in the back of the bus… it’s only a mild case of ALS.
