The Top Ten Annoying Things About Having ALS

I’m sure that if I wanted to I could stretch this list to, say, infinity, but that would take way too long for you to read and even longer for me to write so for the sake of all involved I will condense my vitriol to a relatively short list of ten things that really annoy me about having ALS. I also wish to issue the following disclaimer: the complaints I have about this disease and how it is currently affecting me are extremely time sensitive. Basically, the things that are bugging me right now most likely won’t bother me six months from now based on what I’ve read about and what I’ve personally experienced already with the progressive nature of Lou Gehrig’s disease.

A’ight. Drum roll, please.

I present to you the top ten annoying things about having ALS.

10) Stairs and curbs. Few things these days are as intimidating to me as a flight of stairs. All I can say is thank God for handrails. Going up stairs is not as problematic for me but going down, man, make sure to pass me by before I begin my descent unless you’ve got some time to kill. Even a curb presents a considerable challenge for my diminished sense of balance. I carry a cane with me everywhere I go so it can provide a tiny sense of stability when I encounter the inevitable curb.

9) Pants pockets. If I am ever in a situation, God forbid, where someone says, “Empty your pockets and do it quickly,” well then, I sincerely hope that that someone has read this list and is able to recall this item because if there was an Olympic event in pocket emptying then I would finish dead last. It has become so difficult to fish my keys out of my right front pocket (due to right hand weakness) that I occasionally have to ask Fehmeen (my wife) to get them for me, after which she threatens to buy me a pink fanny pack. On a more positive and fashion forward note, I now proudly rock a wallet on a chain; function over form for sure.

8) Having to plan for everything. No exaggeration here; when I say everything, I do mean everything. From having my wallet out when I am in line in the store to meticulously contemplating each and every step I take, I feel like an ALS boy scout living by the motto, “be prepared.”

7) Multitasking. Three words apply to this entry: forget about it. And when I say multitasking, I don’t mean driving in a car drinking a latte while illegally violating California’s new hands free law. No, the kind of multitasking I am referring to is of the more basic variety such as walking and talking, moving across a room with a glass of juice in my hand, lifting a car key to the ignition and twisting it, and on and on. I guess what I am trying to get at is that it’s literally one thing at a time for me from now on.

6) Ordering a sandwich at a deli. Take a moment to visualize from beginning to end what you do when you walk into your favorite deli to order your go to sandwich. I used to do that too. Here’s what I do now. This little system was devised after about a half dozen frustrating attempts to get a turkey on sliced sourdough bread with mustard, mayo, lettuce and pickles by speaking it to the sandwich maker. Because my speech is largely inaudible and very un-understandable, I now choose to type in my order into my Palm PDA and hand it over to the person when they say, “May I help you?” As they make my sandwich I have to do item number nine on my list and remove my wallet from my pocket first, remove my debit card from my wallet next, and then prepare myself to sign the slip. After the transaction is done, I do the whole thing in reverse and grab the bag and make my way out the door. Trust me, you do not want to know about the getting the sandwich home and preparing to eat it process. That’s another item on a list for another time.

5) Inappropriate laughing and crying. Believe it or not, this is actually an honest to goodness symptom for those of us lucky enough to have bulbar onset ALS, so much so that I am currently participating in a clinical drug trial at UCSF. The long and short of this particular symptom is that there are times when I have absolutely no control over my ability to stop laughing and/or crying. For example, a few months ago when Emma was a newborn, I was trying to make myself useful by attempting to help Fehmeen to calm Emma down and I could not stop giggling. That did not help the situation at all and I was promptly asked to leave. (I am lucky that both of my ladies are so forgiving and understanding). The crying is just as annoying as well especially when I find myself tearing up and sobbing during a Lifetime movie. Please don’t judge me too harshly, okay?

4) Out of control sneezing. If it is possible to hate and detest a bodily function any more than I despise sneezing these days, I would gladly empty my nearly impossible to get to wallet for you. I have always been a multiple sneezer (not just one sneeze at a time, no, no, at least three to five) but now that I have meager control of my mouth and tongue sneezing has become extremely painful and majorly messy. My sneezes have become so fierce and violent I now have to anchor myself to a solid object and grab as many tissues and napkins as I can. The sheer volume of snot (sorry) that comes out of my nose during these episodes is downright faucet-like. I’m not even going to mention the snot bubbles (can you say golf ball?). If I plan ahead and set up my video camera, I guarantee you I would be the next youtube viral video star.

3) Buttons. Buttons are the bane of my existence. They have been created and given a place on this planet to mock me. No lie but I could probably spend a good ten minutes trying to button up my shirt each day. It has gotten so ridiculous that I now leave my shirts pre-buttoned so all I have to do is slip the shirt over my head and have Fehmeen button the top one for me. Needless to say I have gotten rid of my button fly 501 jeans.

2) Tying my shoes. Another exercise in patience, I could literally spend ten minutes per day per shoe. When we are running short of time I actively seek help with this activity but when I have the quality time to spend doing it, nothing beats the fun of trying to tie your shoes over and over and over again.

1) People that treat me like I am retarded. This one seriously bugs the crap out of me. I realize that I don’t get around that quickly anymore and that I sound different than anyone most people have ever heard in their day to day lives but that doesn’t mean you can bust out your Jump to Conclusions mat and play the let’s talk to this guy really, really slowly so he can understand what I am saying card. This has happened to me several times in the very recent past. The first time was at Safeway when I asked a worker there where the Kool Whip was and he told me aisle five and then offered to show me where that was. I declined his kind offer. By far the worst and most offensive episode happened when I went to a doctor’s office for a laryngoscopy, which is a cool procedure where they stick a camera through your nose and down your throat to check out your vocal cords. There were three doctors in the room with me that day and after the test was done, one of the doctors explained to me in a very, very slow and condescending fashion that even though I may get a device (a palatal lift) that may make my speech more understandable, he felt that I should be aware that due to the progressive nature of ALS that the solution is only temporary. Thanks for the four one one, jackass.

Before I sign off, I do want to say one more thing. Even though I may be complaining about the things that are currently annoying me, I want to make it abundantly clear that I want to continue to do all of these things for as long as possible because that means that I am maintaining some modified degree of independence. I have this mental checklist of tasks I can still do and I fully intend to keep that list at it’s current length.

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