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Jeff Long

Distinguished member
Joined
Jul 21, 2011
Messages
254
Reason
PALS
Diagnosis
10/2011
Country
US
State
NC
City
Raleigh
Okay, I need to know that I’m not the only one who “plays” with folks about ALS.
So here are a couple of minor confessions about people I have toyed with…

- Wasn’t willing to part with thousands of dollars to have genetic testing done, but at one quarterly ALS clinic visit I was asked if I’d like it done -for free- as part of a research project. Naturally, I accepted the offer and waited in my room for the research team member. When she arrived and pulled out her consent forms, she said “Since you have an ALS diagnosis, there will be no cost to you.” Without hesitation, I popped out of my chair, stared wide-eyed at her and said (a little too loudly) “I have a diagnosis of WHAT!?!?” Poor girl got teary eyed, and my wife wasn’t too happy with me either. I didn’t think that one through so well; I have a very real fear of needles, and I’m afraid she took great pleasure in that blood draw.

- At another quarterly appointment I saw a young neuro intern. Little sense of humor it turns out… he was literally reading the questions from the forms to determine progression and severity. When he asked if I was having difficulty with buttons, snaps or zippers I said “Heck no, my wife put Velcro on everything!” Without looking up, he proceeds to write “Uses Velcro on clothing.” My wife (always by my side!) tells him “He’s joking; he has no problem with buttons, snaps or zippers.” He tried crossing out his notes, got frustrated that I messed up his neat little forms, and complained to the nurse practitioner that I was not cooperating! I guess really, really smart people trade in their humorous brain cells for productive ones. I wouldn't know about that.

- Speaking of ‘focused’ smart people… at my first appointment with the thoracic surgeon following my DPS surgery, I convinced my wife (common theme… maybe she’s the culprit!?) to use Sharpee markers to draw lightning bolts and “Danger: High Voltage” on the bandage. Doc comes in, lifts the bandage, checks the surgical site and proclaims all is well. No mention of the bandage, so the wife brings it up. He lifts my shirt, looks at it and laughs. Says he missed it the first time… some focus! I said the next sign would advertise “iPad charging, $5 per hour.” He didn’t let me down… he replied “Actually, the iPad would charge the DPS.” I may not be a brain surgeon, but I do like having fun!

- What is it with humorless doctors and their sheets of questions? At the VA clinic to have my progression noted, the doctor (GP, not a neuro) never looked up from the form as she asked questions and wrote down my answers. Since there was a brief physical exam (walk and turn, reflex, walk like a duck, the usual) and some idle chit chat for several minutes before this, I was a but surprised when she asked "Are you bedridden?" So surprised was I that I didn't answer, but she asked again, "Are you bedridden?" I see... it was not a rhetorical question; just a stupid one. I can do stupid: "Yes ma'am, I am bedridden" I replied. To this day, that form is in the 'record' indicating that I am, in fact, bedridden.

I have more than a few others but could use some new material...anyone...anyone...
 
After holding my arms out, squeezing his fingers, pushing my feet into his hands, dragging my right heel up my left chin (trying to) then the left heel up the right chin (again, trying to) and finally the "walk, turn" I said, "Gee, someone's dog would get some kind of treat after all this... wanna see me roll over?" Not a even a smile. Started talking about my meds. Wonder what takes to make them laugh.

Oh yea, at the end of my 3rd EMG and Nerve Conduction Test I told the Doc, "Years ago I had a Security Clearance... I woulda blew that because I think I just told them everything I knew." Again, no smile.. no chuckle. Geeeze.
 
Lol. Love that you still have a sense of humor! The little 12 year old girl (apparently a dr.) who diagnosed my husband was all teary eyed when she said " its AlS. Its fatal and there is no cure" my husband, though he seriously wasn't joking, just smiled and said " yes there is. His name is Jesus" she just didn't know what to think or say. At the specialists office we found a stuffed animal toy in a tiny wheelchair holding a crutch in his hand. When the doctor was out of the room we took him out of the chair stood him up and had him hold his crutch over his head as if to say" its a miracle. Im healed!" Which is actually what we are believing for my husband. But the doctor came back in... Didn't notice it... I pointed it out and we started giggling. She didn't get it. Seems like these people have not only lost their sense of humor but their belief in the impossible made possible by a supernatural God who created it all!
 
These are great. My husband and I often joke about it, the last one that I remember was the day that we were watching a show about undercover bosses, and the one we were watching at the time was delivering a package, and stepped out of the van with out looking. She was nearly struck by a passing vehicle and my husband commented that that has happened to him a few times. I turned to him with a look of horror and said " If you had been hit you could've ended up in a wheelchair!" My husband looked at me with a dead pan face, and his daughter gasped with horror, that is when he decided to laugh. She has finally become used to our humor.

The ones that blow us away are the people that see Tim in his decked out motorized wheelchair, and fuzzy splints on his feet, and ask him what he did to his feet. One of these days, I just know that he is going to come out with some wild and crazy accident, or at least I hope he does.

Tim said that the next time he is going to say that his wife started to spontaneously combust with one of her hot flashes, and I had to stop it out.
 
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I have good friends who know of my condition. Whenever I am over for dinner I say "I'd like to help, but I can't."

Makes us giggle
 
A few months back, I went furniture shopping with my sister. We used their courtesy wheelchair. Seemed like sales people were popping up everywhere " welcome to Leons". The sixth such rep. popped out from behind a couch, makes a b line for me, crouches down and loudly asks " and what brings you here today, dear?" I replied - in an equally loud voice "this wheelchair". My sister slapped the back of my head.

Since having relocated to a new city, I recently had a meet & greet with my new young & eager PCP. First question "do you have stress?". yes doctor, actually this dying business is quite stressful. Second question "were you apprised of the implications of ALS?" Yes doctor. Third question ( he still had not looked up) "did they tell you about prognosis and time lines?" OMG doctor, are you ... are you trying to tell me I'm dying?" That's when he looked up... I started laughing - poor kid doctor was in shock! Finally, he smiled - I'll keep him as my GP!

Bought new glasses. After paying for them, optician says " fill out this ballot and you could win new glasses for life". I said, " now that you've met me, I bet you'll rig it so I win right?" Awkward pause, then laughter - but, my sister slapped me on the back of the head again.

You gotta laugh! :p.

Thanks Jeff.
 
When ever someone is making plans and happens to say to Tim, "so where can I find you" he says "where ever Paulette puts me."

I love this thread, Elaine you cracked us up, and thanks guys for the new lines that Tim is going to use. He often repeats the goofy comments that his father use to say, and I swear he has one for every occasion, but now he has new ammunition.
 
Nurse at my GP's office says, "You've lost A LOT of weight!" I said, "Yea, it's the PLS Diet" She says, "I've not familiar with that one." I said, "Yea, it's one of those really rare ones." She stops, looks up at me with a plain face and starts smiling. She says, "Well, you haven't lost your sense of humor." A few questions later she asks, "Are you diabetic?" I answered, "Not yet, but I'm working on it... ate 2 glazed donuts this morning." At least the nurses can smile. :)
 
Last week I had an umbilical hernia repaired. The surgeon said that these can be very painful (like I didn't know that!) and getting it fixed was important to my overall health. I looked up from the surgical table and said "Doc, fixing a hernia on me is like fixing a door dent on a '74 Chevy Vega that sits on blocks outside a mobile home, but let's do it anyway!" The nurse was laughing as she gassed me to sleep... probably to shut me up!
 
Hilarious! Just what was needed for a 3 O'Clock slump. I will gather some from my PALS and chime in soon. Bahahaha---you guys are the very best!
 
Jeff -

Too funny! Did you get laughing gas?
 
Elaine,
I know so little about anesthesia it is ridiculous, but laughing gas sure would have been appropriate!
Hernia repair is usually a clinic procedure, but the surgeon was afraid of Uncle Lou so we did it in the hospital with 2 anesthesia specialists! I have trouble breathing when laying flat, so they considered using the bi-pap during the procedure but did not in the end. Last thing I remember was the nurse putting a mask on my face and saying "This is just a little oxygen." Next thing I know, I'm waking up in recovery! In at noon, out by 3 and home by 3:30. Stayed high as a kite for 3 days on oxy (there are no points for dealing with pain!) and back to work on day 4.
 
I've spoke to a lot of friends and relatives about PLS. Some never heard of ALS or PLS, not a clue... until you attach it to Lou Gerhigs Disease. Some of the questions... just so unknowing. If one EVER asks if it is contagious I'm ready for that one... "Well, if you ever read a certain section of the ALS Forums you'd think so." :)
 
Just remembered another one...

Not related to ALS/PLS but after a surgical procedure I had they told me I had to pass gas before I could move from recovery. Nothing was happening. Nothing. The nurse told me, “Come on, try.” I held up my hand and said, “Pull my finger.” She said, “That only works on young Grandchildren.” I laughed. And… finally my butt did too. I think someone else in the room said, “What the hell was that?”
 
I know some folks might find these responses and this thread COMPLETELY innappropriate, but if you lose your humor, you've lost everything!

I LOVE THIS THREAD!
 
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