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...
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...