You are not my dad's doctor.
March 3, 2011 10:42 AM Subscribe
Pls. help us be better prepared to advocate for my dad's medical care.
tl/dr's in bold for handy use. Sorry about the length, there's a lot of detail.
Medical professionals: my family and I are increasingly concerned my dad's health problems have exceeded his care provider's skill and curiosity level. A lot of scary complaints (increasing weakness in the left side of his body, shaking hands, lower leg swollen like a tree trunk, increasing listlessness) have been passed off as old age or the side effects of medication. This lack of specificity is one of the reasons we're going to be seeking better care, and he is next seeing a doctor in a couple of weeks. We need some specific points to look at to pursue better care, and we need to know if any of the symptoms that are being dismissed as side effects of the medication can be truly explained by what is currently known. For the sake of focus, I would appreciate it if we could just assume we're right to be skeptical of his care and that it is appropriate to be managing this stuff for him, and that I understand you're not my dad's doctor.
Here are the known factors:
Passivity. He's very passive about his care and his health and he kind of lets my mom run the show. She's the type with a notebook in the doctors office. He's the type who will take a vitamin every single day, as long as she hands it to him.
Sleep apnea. He has a CPAP machine he's been using less lately due to it being "uncomfortable". My mom read an article in Men's Health (yes) that untreated sleep apnea can cause problems with motor skills, made him read it, and he is now being diligent about it, most likely because he's scared.
Heart problems. I don't know the technical terms for these things and don't want to ask because I don't want to freak him out. His heart was getting skippy and at one point his symptoms (lightheadedness, pain, I think) got him put in the hospital. They did a thingy where they threaded a wire(?) up through his femoral artery and zapped/cauterized/duct-taped some part of his heart and he felt much better for a while. This was a year or two ago. After this was done, talking to him on the phone was like night and day -- he sounded much stronger than he had in months.
He's 67 years old, eats reasonably well, maybe fifteen, twenty pounds overweight (tall guy), has a beer now and then, has never smoked. He goes to the gym five days a week. My mom is a persistent, persistent woman. He lifts weights, he walks on a treadmill. He does range of motion stuff and some stretching. My mom keeps after him. His friends of a similar age are all aging much better than him. He's been physically active -- tennis, basketball, etc., his whole life.
He had an MRI/brain scan thing a couple of years ago that showed nothing.
He has recently elevated PSA levels (again, sorry if I get the terminology wrong) and the doctors are "keeping an eye on it".
His left leg has been swollen, beefy-looking (sorry), and gnarly with veins for several years. That was attributed to "a side effect of the medication".
None of this is as scary as the fact that his hand started shaking a little last year -- not while holding anything, while idle. Again, a "side effect of the medication". Over the past year, and particularly in the last two months, the left side of his body has become increasingly useless. First I watched him struggle to get his seat belt on to drive. Then he needed my mom's help putting his coat on. Then he started dropping things. In the past two months, it's gotten much worse, and she is now tying his shoes for him. Yesterday she told me she took him 'out for a drive'. I think what she didn't quite want to acknowledge when she told me that is that he can't drive anymore.
Here's another complicating factor: we're not sure (my mom in particular, and she's been his wife for forty years so she knows what she's talking about) if it wouldn't kill him to know he has a degenerative disease. She thinks it would. Furthermore, we don't know, if he did have Parkinson's, or MS, or any other degenerative disease, how much difference treatment would make. And I suppose I may as well note that Parkinson's is what it looks like to a layperson.
So we aren't sure whether to pursue a diagnosis aggressively if it wouldn't mean treatment that could significantly improve his life in a way that compensated for the psychic hit. If it seems like pursuing a diagnosis might not be a good idea, given his mindset and a tendency to depression, are there any other avenues we can look at pursuing medically that might improve the quality of his life -- such as swapping out meds, particular specialists etc.
These are his meds:
allopurinol-gout (he's been on this forever)
metoprolol -high blood pressure
amlodipine beyslate-high blood pressure
flomax/tamsunlosin - prostate
I know you're not his doctor--we're looking for better information so we can better manage his care so that if someone tells us he grew a second head because he's taking Flomax, we don't sit there and go 'oh, yeah, I can totally see that.'
Also please go easy (you never know how it's going to go on AskMe) but I got so sad typing this.
tl/dr's in bold for handy use. Sorry about the length, there's a lot of detail.
Medical professionals: my family and I are increasingly concerned my dad's health problems have exceeded his care provider's skill and curiosity level. A lot of scary complaints (increasing weakness in the left side of his body, shaking hands, lower leg swollen like a tree trunk, increasing listlessness) have been passed off as old age or the side effects of medication. This lack of specificity is one of the reasons we're going to be seeking better care, and he is next seeing a doctor in a couple of weeks. We need some specific points to look at to pursue better care, and we need to know if any of the symptoms that are being dismissed as side effects of the medication can be truly explained by what is currently known. For the sake of focus, I would appreciate it if we could just assume we're right to be skeptical of his care and that it is appropriate to be managing this stuff for him, and that I understand you're not my dad's doctor.
Here are the known factors:
Passivity. He's very passive about his care and his health and he kind of lets my mom run the show. She's the type with a notebook in the doctors office. He's the type who will take a vitamin every single day, as long as she hands it to him.
Sleep apnea. He has a CPAP machine he's been using less lately due to it being "uncomfortable". My mom read an article in Men's Health (yes) that untreated sleep apnea can cause problems with motor skills, made him read it, and he is now being diligent about it, most likely because he's scared.
Heart problems. I don't know the technical terms for these things and don't want to ask because I don't want to freak him out. His heart was getting skippy and at one point his symptoms (lightheadedness, pain, I think) got him put in the hospital. They did a thingy where they threaded a wire(?) up through his femoral artery and zapped/cauterized/duct-taped some part of his heart and he felt much better for a while. This was a year or two ago. After this was done, talking to him on the phone was like night and day -- he sounded much stronger than he had in months.
He's 67 years old, eats reasonably well, maybe fifteen, twenty pounds overweight (tall guy), has a beer now and then, has never smoked. He goes to the gym five days a week. My mom is a persistent, persistent woman. He lifts weights, he walks on a treadmill. He does range of motion stuff and some stretching. My mom keeps after him. His friends of a similar age are all aging much better than him. He's been physically active -- tennis, basketball, etc., his whole life.
He had an MRI/brain scan thing a couple of years ago that showed nothing.
He has recently elevated PSA levels (again, sorry if I get the terminology wrong) and the doctors are "keeping an eye on it".
His left leg has been swollen, beefy-looking (sorry), and gnarly with veins for several years. That was attributed to "a side effect of the medication".
None of this is as scary as the fact that his hand started shaking a little last year -- not while holding anything, while idle. Again, a "side effect of the medication". Over the past year, and particularly in the last two months, the left side of his body has become increasingly useless. First I watched him struggle to get his seat belt on to drive. Then he needed my mom's help putting his coat on. Then he started dropping things. In the past two months, it's gotten much worse, and she is now tying his shoes for him. Yesterday she told me she took him 'out for a drive'. I think what she didn't quite want to acknowledge when she told me that is that he can't drive anymore.
Here's another complicating factor: we're not sure (my mom in particular, and she's been his wife for forty years so she knows what she's talking about) if it wouldn't kill him to know he has a degenerative disease. She thinks it would. Furthermore, we don't know, if he did have Parkinson's, or MS, or any other degenerative disease, how much difference treatment would make. And I suppose I may as well note that Parkinson's is what it looks like to a layperson.
So we aren't sure whether to pursue a diagnosis aggressively if it wouldn't mean treatment that could significantly improve his life in a way that compensated for the psychic hit. If it seems like pursuing a diagnosis might not be a good idea, given his mindset and a tendency to depression, are there any other avenues we can look at pursuing medically that might improve the quality of his life -- such as swapping out meds, particular specialists etc.
These are his meds:
allopurinol-gout (he's been on this forever)
metoprolol -high blood pressure
amlodipine beyslate-high blood pressure
flomax/tamsunlosin - prostate
I know you're not his doctor--we're looking for better information so we can better manage his care so that if someone tells us he grew a second head because he's taking Flomax, we don't sit there and go 'oh, yeah, I can totally see that.'
Also please go easy (you never know how it's going to go on AskMe) but I got so sad typing this.
Here's another complicating factor: we're not sure (my mom in particular, and she's been his wife for forty years so she knows what she's talking about) if it wouldn't kill him to know he has a degenerative disease
He knows that his body is failing because he's living in it and I can't imagine that he's not already thinking that he has some type of degenerative illness. As long as his faculties are intact, I think it's wrong to try to hide any diagnosis from him.
I'm so, so sorry your family is going through this.
posted by crankylex at 11:34 AM on March 3, 2011
He knows that his body is failing because he's living in it and I can't imagine that he's not already thinking that he has some type of degenerative illness. As long as his faculties are intact, I think it's wrong to try to hide any diagnosis from him.
I'm so, so sorry your family is going through this.
posted by crankylex at 11:34 AM on March 3, 2011
I don't have any medical advice at all, but a consultation with a geriatrician might be helpful at teasing out what is going on, determining what is aging-related versus what is coming from disease or over-medication. The American Geriatrics Society has some resources on what kinds of questions you might want to ask, or how to find a board-certified geriatrician in your area on their website. Good luck!
posted by Neely O'Hara at 12:16 PM on March 3, 2011
posted by Neely O'Hara at 12:16 PM on March 3, 2011
I was just coming in here to suggest that you see if you can find a geriatrician in your area for him to see. There aren't a whole lot of them out there, at least in the U.S., but it might be worth your while to find one even if you have to travel. A geriatrician has much/all of the same training as other primary care docs, but additional knowledge about things like how medication dosages may need to be adjusted for older folks. Plus they tend to be a bit more focused on quality of life and maintaining/enhancing functionality in a way that primary care docs who spend most of their time diagnosing and treating specific illnesses in a younger population may not always be.
Good luck, it sounds like this is a tough situation. Your dad is lucky to have someone like you and your mom in his life.
posted by iminurmefi at 12:31 PM on March 3, 2011
Good luck, it sounds like this is a tough situation. Your dad is lucky to have someone like you and your mom in his life.
posted by iminurmefi at 12:31 PM on March 3, 2011
You or your mom should bring up your fears with your father's doctor. If you are afraid your father may have Parkinson's, you should come right out and say that to the physician and tell him your reasons (e.g. the resting tremor). You could even bring it up privately with the doctor. If he thinks it is a valid concern, or may be even just for your peace of mind, he will likely refer your father to a neurologist. For concerns of strokes, neurological symptoms like tremors, and change of mental status, neurologists are generally who you should consult.
posted by Paul the Octopus at 1:33 PM on March 3, 2011
posted by Paul the Octopus at 1:33 PM on March 3, 2011
If it seems like pursuing a diagnosis might not be a good idea.
Someone I know received a diagnosis of a degenerative disease after a few years of alarming symptoms. She said that she was relieved and even happy to have the diagnosis - despite the unpleasant likely outcome - because it meant that at least she knew pretty well what to expect, rather than having all kinds of even more frightening possibilities running through her head.
posted by emilyw at 1:39 PM on March 3, 2011 [1 favorite]
Someone I know received a diagnosis of a degenerative disease after a few years of alarming symptoms. She said that she was relieved and even happy to have the diagnosis - despite the unpleasant likely outcome - because it meant that at least she knew pretty well what to expect, rather than having all kinds of even more frightening possibilities running through her head.
posted by emilyw at 1:39 PM on March 3, 2011 [1 favorite]
This thread is closed to new comments.
posted by Asherah at 11:28 AM on March 3, 2011