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Sunnyflmom

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PALS
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Fl
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Orlando
This is one thing about my mom's ALS that really irks me. Not the fact that she is non-verbal but the fact that many health care professionals don't document it. My first irritating encounter was when mom went to the ER last month and then got admitted for 6 days due to pneumonia. Initially in the ER I told the medical personnel that mom is non-verbal which prompted the question from them "Oh did she have a stroke?" I replied no, that she has ALS. Next question from them: "Oh so can she not walk?". No, I replied, it's bulbar onset which took away her ability to speak as well as swallow. Mostly blank stares. Ultimately upon her being admitted at 8 PM, the nurse showed her the call button on her bed. I asked if they would be sure to make a note that if she presses the call button that she will need assistance in person due to being non verbal. Her only mode of communication is physically writing on a white board (she refused electronic communication methods). Sure enough, next day while visiting, dad needed the nurse so he pressed the button. The response thru the intercom was "yes, can I help you?"
Thereafter various nurses, technicians would visit her for various reasons. They would always walk into the room and greet her verbally (which is nice of them) but they seemed to expect a verbal reply from her. Eventually they agreed to put a note on the door that patient is non-verbal.
The next time that I was peeved was last week while "mom-sitting" so dad could get out for a while, their home phone rang. I answered and could tell from caller id that it was her PCP's office calling. The person asked to speak to "Mary". Now I would not have been peeved if a random solicitor called asking to speak with her because they don't know her from Adam. But her PCP office should certainly know or have a system of notating before calling someone that they are non-verbal. I almost wanted to hand the phone to mom but would not have put her in that position. Or maybe tell them that I'd put her on but don't expect a response from the non-verbal patient. Ultimately I just said that she is non-verbal and that I'm her daughter. They told me they were confirming her upcoming appt.
Maybe I'm being too picky but the lack of knowledge from the medical community is very frustrating.
If I may expand briefly in another area, I was also displeased when we visited a dentist (upon moms extreme insistence) to attempt to get her mouth freshened up a bit. I told the dentist mom has ALS if she knows what that is. She shook her head. I called it Lou Gehrig's and she said nope doesn't know what that is.
Ok deep breath and asking God to give me strenght. :roll:
 
This is one thing about my mom's ALS that really irks me. Not the fact that she is non-verbal but the fact that many health care professionals don't document it. My first irritating encounter was when mom went to the ER last month and then got admitted for 6 days due to pneumonia. Initially in the ER I told the medical personnel that mom is non-verbal which prompted the question from them "Oh did she have a stroke?" I replied no, that she has ALS. Next question from them: "Oh so can she not walk?". No, I replied, it's bulbar onset which took away her ability to speak as well as swallow. Mostly blank stares. Ultimately upon her being admitted at 8 PM, the nurse showed her the call button on her bed. I asked if they would be sure to make a note that if she presses the call button that she will need assistance in person due to being non verbal. Her only mode of communication is physically writing on a white board (she refused electronic communication methods). Sure enough, next day while visiting, dad needed the nurse so he pressed the button. The response thru the intercom was "yes, can I help you?"
Thereafter various nurses, technicians would visit her for various reasons. They would always walk into the room and greet her verbally (which is nice of them) but they seemed to expect a verbal reply from her. Eventually they agreed to put a note on the door that patient is non-verbal.
The next time that I was peeved was last week while "mom-sitting" so dad could get out for a while, their home phone rang. I answered and could tell from caller id that it was her PCP's office calling. The person asked to speak to "Mary". Now I would not have been peeved if a random solicitor called asking to speak with her because they don't know her from Adam. But her PCP office should certainly know or have a system of notating before calling someone that they are non-verbal. I almost wanted to hand the phone to mom but would not have put her in that position. Or maybe tell them that I'd put her on but don't expect a response from the non-verbal patient. Ultimately I just said that she is non-verbal and that I'm her daughter. They told me they were confirming her upcoming appt.
Maybe I'm being too picky but the lack of knowledge from the medical community is very frustrating.
If I may expand briefly in another area, I was also displeased when we visited a dentist (upon moms extreme insistence) to attempt to get her mouth freshened up a bit. I told the dentist mom has ALS if she knows what that is. She shook her head. I called it Lou Gehrig's and she said nope doesn't know what that is.
Ok deep breath and asking God to give me strenght. :roll:
OMG! Your post really hit homw for me. My mom also has ALS. The Dr did not expect her to live this long. But they dont know how bull hwaded my mom is. Currently she is pretty much confined to a wheelchair having lost her balance. She has a hard time swallowing without choking making eating difficult and also causes a lot of drooling which my mom is very self conscious of. Verbal communication has become very difficuly for her...as my mom would say she sounds lik e she has mush in her mouth. it is easier to understand her when you are face to face. Unfortunately i live 8 hours away. Her dextarity i. her hands has gone also making her writing illegible. with the conbination of her hardly being ablw to speak or write anymore her ability to communicate has all but been taken away. ALS is a cruel disease!
 
I agree with your pet peeve. I work as a switchboard operator and I can tell you that the biggest problem sems to be poor communication between one staff to the other. I have to give information to several people about the same thing to make sure stuff is done. You shouldn't have to tell ten people to get a job done. It's so frustrating. I am really surprised as well about how many people never heard of ALS. I talked to several nurses who work in our ER at our hospital and they have had only a few patients per year come in with ALS. But, from this forum it looks like it runs rampant. Take care of yourself, Kim
 
I know exactly what you mean, I hav biulbar. People call the house and ask to speak to mr and they are to,d I have als and cannot speak, and it never fails they have no clue what it is, some know if you say Lou Gehrig's, but thr majority of no clue. Some will insist to speak to me cause they can't talk to anyone else, even though every company I deal eith was sent a motorized letter from me giving them my circumstances and who I give authorization to speak with. Most times I just tell my daughter to hang up on them if their that stupid. Truly amazing, after all these years and people still don't know anything about this disease
 
If many in the medical community have knowledge about ALS which ranges from knowing not much to absolutely knowing nothing about this disease, just imagine about the common folk on the street with absolutely not knowledge of medicine whatsoever.

NH
 
Definately hits home! I have bulbar onset and cant talk and it amazes me all the people I know (at work, home Family etc) that are standing in front of me and tell me to "give them a call". At first I laughed. Then it was more of a "Duh" stare. Now it just pisses me off.
The als clinic still calls me to confirm all my appointments, and leave a number I can call if I can't make it. If they left an email I wouldnt mind.
I do have fun with it though. We had an 800 caller that wouldnt stop calling. I finally told my wife that I would answer it. They hung up on me and never called again.
I also have been emailing some close friends the youtube of "Puttin On The Ritz" by Gene Wilder and Peter Boyle in Young Frankenstein. I tell them its my Broadway debut! I die laughing every time I see it.
 
some nurses i have talked to say they might have been told about als in training but didn't pay much attention to it as it was rare, so they dismissed it.
 
My pet peeve may seem silly. It irritates me when people say but you look so good. It feels to me like they're saying there's nothing wrong. I'm sitting here in a wheelchair guys! I try to
explain the disease to people and tell them it's just motor neurons. I now have an ALS warrior sticker on the back of my chair so there's no question as to what's going on here. I know it's a small thing and it ticks me off that I've gotten so hypersensitive. Thanks for listening.
Hollister
 
I know what you mean hjlindley! I have had people ask me, "how did you get on disability, you don't look sick?" When I try and answer them they get this foot-in-mouth look on their faces. I am bulbar onset, so far my mobility hasn't been affected, just speech and eating.

I'm not complaining, I am glad that, for now, I don't look too different than I did before. Unfortunately some see this as, it's not that bad. They fail to do any research to find out the possible/probable future ailments that are in store for me.

Thankfully for me, my friends and family have a good grasp on what it is. But for people that I deal with on the "street". most of them just don't get it!
 
prepare a card with facts about als. print and hand out. als is rare and those that say they have heard of lou gehrigs desease still know nothing about it
 
prepare a card with facts about als. print and hand out. als is rare and those that say they have heard of lou gehrigs desease still know nothing about it

That's too bad, Pearshoot.
When I was in College, I had to take some courses apparently unrelated to my main field of study (such as Calculus, Differential Equations, Physics, etc.) and I had to remember what I learned in those courses because I had to use it for other classes.

So, if they are taught about ALS and don't care, shame on them.
No wonder why they have no clue when they have to deal with a PALS at a hospital ER.

NH
 
When hospitalized for extensive oral/jaw surgery a few years back, after 48 hours of no meds, no nutrition, and no nurse or doctor visits, I called 911. I could only grunt ... What a nightmare. (Never schedule surgery on a Friday.)

Anyway, my pet peeve now: yelling. Do they really think that helps? People are always yelling at me. My hospice nurse! I'm not deaf.
 
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