6. Out Of Sight, Out Of Mind

May is ALS awareness month. In honor of that, I thought I would share a story of what it’s like to live with ALS. True story.

Have you ever gone to a doctor’s appointment and been left waiting for what seemed like forever? Waiting so long that you began to wonder if they had forgotten about you? What am I asking? If you are reading this blog then chances are, you have or had a serious illness and, this has happened to you more than once in your many doctors appointments.  If you rely on others for your caregiving, then know that at some point, you probably will be forgotten. Not on purpose, but it just happens. I’m not saying this to worry you, but so you can plan ahead, and perhaps prevent it from happening to you.

I was in the bathroom late one evening. Yes, on the toilet. After what seemed like forever , in fact 10 whole minutes (I have a clock right in front of the toilet), I yelled for my caregiver. No reply. I waited a couple of minutes and yelled again. Still no reply. Ok, so after 20 minutes I really started to get upset. Normally they would check to see if I needed anything after just a few minutes. I cannot get up on my own, so I am stuck waiting. After 30 minutes, I start to worry. Did they fall asleep? Maybe they fell down and got hurt? The scenarios start playing through my mind. My foot falls asleep, my butt is going numb, and it’s only been 40 minutes! I try yelling again. Nothing. I keep yelling. I yell for the dog. Nothing. Really? Not even the dog remembers I am stuck in there? Note to self; get a better dog. Maybe a Saint Bernard rescue type dog. Now I really start freaking out after 50 minutes of sitting on the toilet. I start trying to figure out when someone will be over next. My daughter is due over in 10 hours. Could I really sit there for 10 hours? After 1 hour and 5 minutes, the yelling paid off. My carer had fallen asleep, and finally woke up! Relief!

When, and if, you are ever forgotten, try not to freak out like I did. Maybe you can plan ahead to prevent it from happening. Maybe a clock in the bathroom isn’t such a good thing. Maybe I can try to finish up in the bathroom before midnight, when my carer is likely to be tired. Maybe I could train my body to go with someone else in the room (yeah, that’s not gonna happen)? You know, out of sight, out of mind! Maybe I can get that rescue dog, or maybe a helper monkey? Maybe someone could just find a freaking cure for ALS!

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5. Poor Poor Pitiful Me 

While at a restaurant , my daughter and I were at the exit waiting for my husband to pay our bill. A man and his family entered the restaurant and saw us standing there. He immediately had a look of pity in his eyes and came over to me with an, “Awww…you poor thing…”, saying how sorry he was that I was in a wheelchair. He then went back to his family and continued to talk about that poor lady in the wheelchair! My daughter and I looked at each other and as the lyrics to Linda Ronstadt’s song,  “Poor Poor Pitiful Me” (Poor Poor Pitiful Me ) floated through my head, we both burst out loud in laughter! And, while I am really sure he thought he was being nice, the fact remains that he literally described me as, “that poor lady”. Wheelchair or not, neither I nor my daughter think of me in that way, and it just struck us as absolutely hilarious! There was a time when maybe I would have tried to contain my laughter, worrying about hurting his feelings, but not anymore. Sorry, not sorry dude, you met the post ALS me!

4. Cake Or Death 

The comedian Eddie Izzard does a hilarious bit about The Church of England offering it’s parishioners a choice of either cake or death (https://www.youtube.com/watch?v=BNjcuZ-LiSY). Not such a tough choice, as it turns out. With ALS, you have a choice of either drunk or angry. Not much of a choice, as it turns out. And really not a choice at all, it’s more the luck of the draw as to which you end up with. Either you find your speech slurring when you try to talk, and you sound drunk all the time, or  you can’t take in enough air to get your words to come out without great effort, making you sound angry when you try to talk. Either way you end up really pissing people off. Even those closest to you who you think should understand your struggle. I’m not sure why they seem to forget that, just like every other muscle in your body, you may have little to no control over your voice. But, it happens. People will get frustrated and forget. Just like we PALS (person with ALS) sometimes forget that we aren’t the only ones who get frustrated when dealing with this disease day in and day out. I don’t know why we seem to forget that we don’t hold the copyright on frustration. But, it happens. Just remember when this happens, to give each other a break, and maybe share some cake.

3. You Oughta Know 

This blog post seemed like a good one for all of the moms out there.  Happy Mothers Day!

When you are not able to easily make note of appointments, shopping lists, your kids busy schedules, etc., you rely on your memory. I am talking about when you physically can’t write anything down without the help of a switch or a computer eye gaze system, and not just because you can’t find a pen, or your phone. This is true for anyone who has trouble using their hands for whatever reason, but it’s  especially true if you are a mom. You should not only sharpen up your memory, but you will find that life is easier if you can practice your psychic skills as well. Because, believe me, it won’t matter if you are feeling so bad that you have been in bed for weeks, or if you haven’t physically been able to move your arms or legs in years… when your kid can’t find their left tennis shoe, or backpack, or whatever it may be, you will be the one they yell for. You are the one they will expect to help find it. So, if you can’t get up and go find it yourself,  you had better hope your psychic abilities kick in so that you can magically tell them where said item is located. Besides knowing where all personal belongings are located at all times, you will also be expected to know things like, are you out of Oreo’s? Do you have any orange juice in the fridge? It doesn’t matter if your wheelchair won’t fit in your pantry, or if you can’t physically open the door to your refrigerator. You are the mom and that means you ought to know.

This “you oughta know ” theory comes into play with husbands too. You may not be able to write a check, but you should somehow know where your husband put the checkbook. Also, are there any stamps left, and where are they? The list literally never ends.

What does any of this have to do with the Billy Joel video, you ask? Well, nothing, except that the lyrics, “you oughta know by now “, are in the chorus and kept running through my head as I wrote this.  Also, music makes everything more enjoyable!

So,  if you are dealing with a serious illness, you might want to start taking some Ginkgo Biloba. I  think that’s the herb that helps improve your memory. I probably oughta know that too.

 

2. Get Some Zzz’s

Sleep is sometimes hard to come by when you have a serious illness, or even when you don’t. Not getting enough rest can lead to all sorts of new and unwanted problems on top of what you are already dealing with. I am all for alternative medicine, and by that I mean not medication, but herbs or vitamins, aromatherapy, etc… But life is short. If you have a serious illness, chances are, you already have way too many things on your plate.  Sometimes I think it’s faster and easier to just get a prescription. Whether it’s pain that’s keeping you awake at night, and you need a pain pill, or just the inability to sleep and you need a sleeping pill, talk to your doctor and get some rest. I personally take both. But this is a blog , and I am not a doctor. I don’t even play one on TV. Although, I have met and talked with Rick Springfield several times, and he played a neurosurgeon on General Hospital for years…so that should count for something, right? Dr Noah Drake

I take the lowest dosage of the sleeping pill, Ambien, and I cut them in half. I end up taking such a small dose, by the time I cut that tiny pill in half, I sometimes wonder if it really helps that much, or if I just think it does. So when my husband found a half of an Ambien on the floor the other night, just after I had taken my evenings pills, I wondered if and when I may have missed a dose. I was pretty sure I had taken one that night, mixed in with a couple of other small pills. I have developed a habit of checking which pills I am given before I swallow them, by feeling them with my tongue. When you can’t pick up a pill yourself and rely on someone else to do it for you, if they make a mistake you will be wishing you had double checked it beforehand.  I can identify probably close to twenty pills just by the way they feel in my mouth. That little trick has kept me from taking the wrong pill more than a few times over the years. I started checking them years ago, after I had asked my daughter to bring me an Imodium.  Not really paying much attention to what she brought me, I took it and soon found out I had actually taken a Tylenol PM. Two pills that were packaged the same way and looked similar, but believe me, if you need an Imodium, you do NOT want a Tylenol PM! 

Back to the Ambien… I slept fine that night. Thinking that I must have missed a dose at some point but hadn’t had any problems sleeping, I decided to skip the Ambien the next night. Around 3:30 a.m., I began to rethink my decision. By 4:30 a.m., I had decided that I didn’t care if I took a half of a sleeping pill every night for the rest of my life. I have too much else going on to have to worry about not sleeping.  So, I took my half a pill and got my Zzz’s.

1. ALS and Zombism…Pretty Much the Same

In the Netflix series, Santa Clarita Diet, ( https://www.youtube.com/watch?v=xjRnbOgoAUQ ) Joel and Sheila are two happily married realtors going about their business when one day Sheila gets sick. Very, very sick. I mean, throwing up sort of sick. A hilarious amount of throwing up. Long story short, Sheila is a zombie. She and her husband and daughter go on with their lives trying to remain as normal as possible, all the while becoming less and less normal. Watching this hysterical show made me realize how similar my life with ALS was to Sheila’s life as a zombie. Like Sheila suddenly becoming a zombie with very few symptoms beforehand, I also was just busy living my life when a few non specific symptoms led to an ALS diagnosis. Suddenly having ALS, as with becoming a zombie, just happened and no one knows why. Maybe a virus? There are plenty of theories out there, but no one knows for sure how or why it happens. Just like with ALS,.there is no cure for being a zombie With both ALS and life as a zombie, you go on living your life as normally as possible until your body stops working. With ALS, body parts give out. When you are a zombie, body parts fall off. With both “diseases “, the things you are able to eat change, although for very different reasons. With both, you may notice a change in your personality, again, very different reasons. With both ALS and zombism, your life and the lives of your family are forever changed. The good news is that, like Sheila, I’ve found that I can be happy in spite of living with ALS… or in Sheila’s case, zombism. We both take things in stride and just go on with our lives. I might suddenly notice one day that my little toe will no longer move or help my foot to bear weight, and Sheila (spoiler alert) might  suddenly find that her little toe is missing. But, what the heck, we still have four more on that foot, right? We shrug it off and just keep going! Zombies and people with ALS, we never give up!

Incurably Happy Life

I was diagnosed at 31 years old with ALS . Otherwise known as Lou  Gehrig’s disease . Remember all those buckets of cold ice water everyone was dumping on their heads a few years ago? Yea, that was , at least in part, for me. It unfortunately has not yet led to our miracle cure, but that’s okay. I have found out that I can be just as happy living without muscles as I can with them! Okay, maybe not “just” as happy , but pretty darn close. In case you didn’t know, that’s what ALS basically means…your muscles slowly, or quickly, quit working. It truly sucks.

I was diagnosed back in 1998 , so I have been doing this awhile. People who are newly diagnosed always ask us old timers what our secret is to surviving past the general 2-5 years prediction so many doctors hand out. So I thought I would use this blog to help in anyway I could to share what I have figured out over the years . Or, at the very least, give you a laugh and a few minutes to forget about your problems.

Warning:

I was not an English major. Ignore my grammar mistakes and typos..I am typing this with a switch and my eyes! I also went to school way back when our school first got computers, so I am self taught and don’t know much about setting up websites, so this is a work in progress. Hope you enjoy!