When is it time to dump a doc?


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When is it time to dump a doc?

Postby CarlaL48 » Thu May 30, 2013 9:38 am

Dale's regular neurologist seems genuinely empathetic and has his patients' best interests at heart every time we see him. But we've had some difficulties with his front-office staff in the past, e.g., wrong scheduling dates, wrong documents in files, etc.

This latest incident, however, is beyond the pale, at least for my temperament. Two days ago, Dale fell twice on concrete, bloodied as usual, but nothing broken. On the second fall, he hit his face. Never lost consciousness, but an egg on his forehead and scrapes and red bruises around his eye. Having raised three sons, I was pretty sure he was all right, but I'm still feeling my way through this possible PSP, so I called the neurologist. I explained to his young, barely articulate receptionist what had just happened, and asked her to ask the doctor if I should be watching for possible signs of concussion. Never heard a bloomin' word back -- and every other doctor I've had would always have had one of their staff call back. I'm giving the doctor the benefit of the doubt, wondering how my message was relayed to him. In either case, it's an untenable situation. We'll see this doc again in late June and I'll ask him about this, but I'm still wondering if I should be sizing up other neurologists. Thoughts?

(BTW, we're seeing the movement disorders specialist on June 10, for whom I'll write a review on this site. Depending on her assessment, we may be seeing more of her and less of the regular neurologist -- in which case, "dumping" him becomes moot.)

Blessings,
Carla
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Re: When is it time to dump a doc?

Postby Robin » Thu May 30, 2013 5:34 pm

I think you should go with your gut, which seems to be to talk to the neurologist but lean towards dumping him because of his receptionist. He should know why he may lose you as a client!
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Re: When is it time to dump a doc?

Postby eplowman » Thu May 30, 2013 10:42 pm

Hi, Carla,

Is Dale on the move unassisted? If so, it now would seem a good time to make sure that when he is on his feet, someone should be walking with him arm in arm. Insist on that. For Parkinsonism patients, falls are the biggest risk for serious injury. He can do nothing to avoid falling. He likely does not know he is falling until he crashes to the floor or into furniture. He cannot cushion himself.

Sounds like the neuro needs to do a better job of training and supervising the help. Actually, having a good family doctor to serve as Dale's primary physician would be a priority, if he does not yet have one. Neurologists aren't used to being called on to manage bumps on the head and other physical injuries. And, in fact, once there is a firm diagnosis of PSP, the neurologist's work is essentially finished. There is little more he/she can do. The disease as of now is incurable and untreatable. A movement disorder specialist may be able to offer encouragement and track the downward progress of the disease for a while, but the need for that role also diminishes in time. Conversely, a knowledgeable and well-skilled primary care physician becomes more important as time goes on. Be sure to provide all the medical professionals with info about PSP; you can start with the NIH/NINDS Fact Sheet on PSP listed in a topic near the top of the opening page listing all the forum topics.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: When is it time to dump a doc?

Postby CarlaL48 » Fri May 31, 2013 8:16 am

Thanks, Robin. As a rule, I have a pretty good "read" on people, so I will go with my gut after our discussion at the end of June.

And thank you, Ed. You told me something else I did not know, that the neurologist's role will diminish after making the diagnosis. It makes sense. It just hadn't occurred to me -- I'm still feeling pummeled with the newness and strangeness of all this.

Dale does use a walker, but he falls anyway. He says most of the time that his legs simply buckle with no notice. On a few occasions, he's tripped over his own feet. While he was always a little prone toward "pigeon-toedness," it's quite pronounced now with his left foot. Sometimes, that foot is almost perpendicular to the other.

We are getting a three-wheeled scooter today that he can use inside and out. He's so excited, hoping he can help again with some simple chores like taking out the trash (one bag at a time) or going to the mailbox. Even if his ability to use the scooter is limited to a few months, it's worth it just to see him smile.

Dale's frequency of falls is increasing (I keep a log with some details). Between April 15 and May 15, he fell 15 times. But since May 15 to today, he's already fallen 11 times. I'm already having to help him get ready for bed at night, because there's no strength left.

God bless you two stalwarts.

Carla
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Re: When is it time to dump a doc?

Postby malbers » Tue Jun 30, 2015 10:59 am

We dropped a doctor after he told us to sell our house and take a cruise. REALLY??? My husband is unstable and he wants me to take hime in a cruise ship.
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Re: When is it time to dump a doc?

Postby help4dad » Wed Jun 29, 2016 5:56 pm

Has anyone found a good PSP or atypical Parkinsonism doctor anywhere in the south? We are in Louisiana. The Parkinson's meds did not work for us. 4 doctors so far forced us to use them and each time, Dad got worse. We need help. Please let us know where there are doctors that treat atypicals and recognize that not all patients respond to Mirapax, Sinemet, Entacopone, Amantadine, etc. Thank you.
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