Does anyone feel that the medical fraternity are ignoring the patient and trying to treat the disease (from the hymn sheet provided to them by well meaning medics) while ignoring what the patient is telling them?
TREAT THE PATIENT NOT THE DISEASE - Cure Parkinson's
TREAT THE PATIENT NOT THE DISEASE
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drew410
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46 Replies
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You bet!!!! I believe this 110% and I am not quite certain how to deal with it with my PC. After 6= years with the diagnosis I still feel like I don't have a medical plan....and most of the time at dr appts. I catch the dr talking to my husband and not me!!! How does one deal with this???
I guess you just have to be as rude as they are. "AYE! I'M DOWN HERE IN THE WHEELCHAIR (CHOOSE YOUR PROP). IF I WAS A VEGGIE I'D BE ON THE MARKET STALL. AS IT IS I'M NOT, SO LISTEN TO WHAT I HAVE TO SAY, ALRIGHT?
Capital letters suggest shouting and if you are being treated like a carrot, broccoli or any other type of veg, you are entitled to SHOUT!
I have experienced this NUMEROUS times before with other practitioners (pre PD dx) but I am now really blessed with an attentive and caring team.
We must demand our rights when dealing with our health care providers!!!
Steve (Bisbee, AZ)
That's true. You have to be your own healthcare advocate.
RE: Being your own healthcare advocate. Let share my experience.
Start with 2004.
Absolutely agree 100 %. The days of treating doctors like some sort of superior being has long gone. They are just guys/girls doing a job - some better than others so shop around to find one that LISTENS and reacts positively to the information that you supply them with.
Definitly. I tell my PD doctor what bothers me, and he "half listens" telling me in a "yes I know" voice.......not even writing it down at times......this bothers me.
I feel like saying........"Even if it's a normally ocurrance, "take a note of it!"
i know what you all mean but it is so difficult to explain to THEM = esp when your voice is weak and you feel so vulnerable ..
Amen to that. My husband has a weak voice now. Would rather point to
something he wants then ask.
Gosh! I feel really fortunate! My neurologist is a great individual. My complaint is about the medical community in general--
My 1st suggestion find a doc who gives you respect! I actually go fro Santa Fe to LA for my neurologist. I know not everyone can do that. My son and his family live in LA so that become a family visit and there are not to costly, direct flights.
2. Start your vist by getting his/her attention, a marching band would do it. Other than that I've started the visit by saying I need you to ... ( listen to me or I need you to use layperson vocabulary or else define any terminology. It does not matter what you say, it is more interrupting the flow that many MDs get into.
3 let's all share good techniques that have gotten the desired reacton
Enough, Joyce
I agree. My husband likes his doctor. We are moving three hours away. I told him that we can come back for visits to his doctor. He disagrees, telling me that with the cost of gas and a stay in a hotel, it will cost more than the doctor visit in the new town. We did meet his new doctor when we visited his mother in the hospital in December. She told us that she would definitely take my husband on as a patient. She is wonderful and we both like her. Guess we will have to change 
It seems like they do treat the disease not the patient...and with Dr's these days it's all about MONEY!!!!! They just want your money and give you a script..take these pills and I'll see you in 3 months!!! Geeez I want answers about PD and what or what may not happen as the PD progresses...I don't just want meds I want some form of answers as to what is going on!!! Just don't take my money and give me only 10 minutes of your time and say " Take these see how they work, and I'll see you in 3 months" I want some HELP!
Please be aware in the wording of your postings that Parkinson's Movement is about getting patients, doctors and researchers around the same table. How best may that be achieved?
Moderator-1, You only have to look at the replies for this blog to see that there is a great deal of dissatisfaction by patients with regards their treatment by some medical staff. I am not trying to provoke anomosity bewteen doctors and patients merely pointing the over-riding problem that is the title of the blog. My current consultant and I have a very good rapore but when I lived elsewhere it was appalling. They did not listen to me and I was treated like a guinea pig - in hindsight. I am currently involved in the penzu diary as well.
This may not be the answer we are looking for, but first of all the PWP do not need to be treated as "less than", they need to be an equal at the table.
I know there are good and bad practitioners and researchers out there, but as PWP we have a first hand knowledge of what we experience with the disease. It seems that others and myself have had our experiences downplayed by the people who treat the disease.
I have noted common experiences of different symptoms that many of us have. When I tried to ask questions about my mouth and the gingivitis my MD immediately down played it and did not look in my mouth and told me that it had no relation to PD or to the Azilect. Yet many PWP had the same or similar problems with their gums, etc. when I asked this question on this site. I don't think it is only incidental.
Thank you Susie, you have hit the spot again. For the record my GP (MD) and consultant are great guys and I get on well with them and they do listen to me BUT I have seen so many other medics who talk down to me and have this superior air about them and their self importance. God help them if they have to cross to our side of the table!
Equality, be it man or woman, medic or patient, is what is required universally with respect at all times.
Susie, I hope you and all other "Parkers" are having the best day they can,
God bless
Drew
Hey Drew,
I am on the lookout for a new Neurologist and PCP, I do not feel that they have been on their toes in regards to my medical treatment. I believe that physicians and patients need to work collaboratively. They are to "do no harm", I am afraid the omission or being neglective in the care of their patients is doing harm.
I typically do have someone I trust go with me to appointments just so I can make sure that I understood correctly what was or was not accomplished in my visit.
I always take Elaine because in the heat of the moment I forget what has been agreed to on occasions. Part of the glamour of getting old.
Just gone 6.30pm here so on with the pinny and make the dinner. I agree with the "do no harm" re attitude. Does more harm the mis-diagnosis. Be well
Interesting thread. I was a paramedic, pre parkinsons.Now i am a pt. have had parkinsons for 12+ years. worked for 6 +/- with disease.used to transport alot of pts c/parkinsons, so i fortunately have seen both sides. its the drug companies that actually run things, drs get kick backs and push those drugs. my belief is that some drs let egos get in the way of their treatments, and being fair to pts. its not possible to be in that career without some sort of empathy. Drs have been in it for a long time and they to get callous c/out knowing eg job burn out. but we do need them, and each of you are only one person. if everyone of their pts was short with them you could imagine how that would affect a person. they are people with feelings and we should have empathy for them as well. be polite and just talk to them, keep in mind that we tend to loose our sense of humor a little with PD as our life tends to suck over time. Sorry about that I am in the middle of loosing my wife and family after 25 years cause of this disease. yes they will talk to the caregiver first. i was guilty of that also. but once again be polite and ask them to talk to you or have the caregiver wait outside. they can talk to the dr after. each person is unique treatment wise. i dont know just try to walk in their shoes as you wish people could walk in yours.i am not a dr and these are only my opinions.
drew410• in reply to
Pacdiver, Thank you for your very frank and honest contribution. I am so sorry about your family problems. Pointless me making any comment so I won't.
Interesting that you have seen both sides of the coin re medics. You are better placed than most to give a valued opinion on the subject matter. I would appreciate it if you would read Moderator-1's comments. I am about to chuck my 2 penn'i'rth in (English expression meaning stand up and be counted).
From personal experience I find the medical people I have come in contact with over the years, i.e. GP's and Consultants, think that they are superior in knowledge when talking to their patients. If you attempt to tell them how to do their job i.e. have an opinion then you hit a brick wall and stubborn resistence. They have spent years training (which is to applauded) and they definately know more that any patient could possibly know. On that basis they do not listen. Many have pre-conceived ideas regardless of what the patient says and they know best!
I am fortunate in that the GP I see and the Consultant are not of that ilk.
So, if I may bring the Moderator-1 into the discussion what is required from the medics side is the ability to listen to the patient who lives with the condition and weigh up whether what is being said by the patient is for real or merely attention seeking because they are feeling sorry for themselves. Asking the pertinent questions should establish where the patient is coming from.
It is a matter of honesty, trust and the ability to take on board the thought processes of both parties equally to come to a equitable conclusion.
Until that situation exists we cannot move forward.
The most appalling comment I ever heard from a consultant after prescibing a certain drug was "OH I must tell the Rep. that it worked for you. He will be pleased". What sort of message does that send out to the poor patient?
My immediate thought was whether he was getting a bung from the rep. Maybe I read it wrong but that is how it come across to me and to my wife who is my unpaid carer.
Please do not get me wrong. There are a lot of dedicated people trying very hard to, one, find a cure, and two, trying to give their patients the best quality of life possible bur there is no easy answer to this conundrum.
OK, I am getting off my soap box now and going to bed. I hope that this tome makes sense to some people.
Asking for this disease I did not. Asking for help to endure it I am, with a reasonable quality of life.
Is that too much to ask for?
All of the time! I had a list of questions when I saw my Neurologist last week and he did not answer any of my questions...Again, if they could be in our shoes. The answer I did get was I had PD and get use to it, he did add that it was always going to be worse under stressful situations!
Absolutely agree, Drew. I go with all these things I feel I need to mention and get very little response from my Consultant. Is this because the next patient is waiting rather than a lack of interest. I only seem to be in the room if I query my meds then he blinds me with science about various other meds I could try. I leave the room sometimes wondering whether it was worth all the bother.
I do not think it is all my Consultant's fault, rather the system they work in. Too many patients, not enough time. I will see how things go on my next visit as I believe I will be seeing another Consultant. Then I may have to ask for a referral to another, larger unit. This would involve a lot more travelling.
I am blessed with a doctor who will listen and have a conversation as long as it takes.
chrismw• in reply to
Me too! After reading these comments I feel like sending my neurologist a thank you card!
I will add a little to what has already been said. I am a nurse, my ex was an MD, I know they want their egos stroked. As a patient I am not paying to stroke their egos, I am paying them to answer questions and not just tell me I have PD, get use to it!
One job I worked at was as a Ceritfied Diabetes Educator. The MD I worked for had diabetes himself and had lived with it most of his life. He understood what his patients were living with.
We had a 5 day educational program for people with diabetes and thier family members. Our job was to give them the tools and the knowledge to go home and manage thier diabetes. Education is essential and to my knowledge there is not a program out there that does this so we depend on websites such as this and search the web for the answers our physicians do not give us. We find other people who understand what we are living with.
I would love to find a Neurologist who has PD, but as we know, this disease affects us in a way that is both physical and cognitive. I still have a lot of medical knowledge but can no longer work as a nurse due to physical and cognitive challenges.
I do belive it is a matter of PWP educating the public AND the medical community about this disease. Most of us probably were uneducated about it ourselves until we had to go face to face with it.
I might get in some hot water here, but Drew, I don't think that many of the doctors out there know more about PD than we do! They have many other more common illnesses to think about. I do not even remember a lecture on PD when I was in nursing school and in practice I do not remember a patient I cared for with PD!
Last weekend, my son made the statement that PD is considered a more "rare" disease, that I was the only person he knew with PD. I would not call it rare, but the numbers are less than say, the % of women who develop breast cancer or the % of men who will have prostate cancer. That is all the more reason that we need to get out there and spread the word.
I am living in a very desperate situation right now, but if I ever get into a flight pattern and still have my wits about me, I intend to begin educating the public and the medical community in regards to this disease.
Hey Drew,
I just posted a comment to the modirator, see what your thoughts are on what I have submitted.
You all want answers ,well pretend for a moment that your a neuro,yes that superior alien being,how many would like the job,imagine for a moment how difficult it is,every patient who goes through that door has different problems and everyone who comes out has a different prescription EVERYONE.Easy job hes got.
Treatment is more personal than its ever been tailored to circumstances and specific needs.
We have an opportunity here as clients and consumers to contribute positivley,yes every person with pd has a contribution to make no matter how small so critisism is essential,but what do you see as a way forward.Have a moan have a screaming fit or ask some questions your part of the solution
be constructive
Pd makes our lives takes on a new sense of urgency . We want to understand we want answers to questions attempting to understand Why dont my meds work.What is my future .The questions are not answered because there is no difinitive answer.We are all different in presentation response and progression.So get real dont expect an answer
So were do we go from here,do you wait at the bus stop or drive the bus..you can travel one stop or to the end of the route,and get on or off whenever,you wish or need to.The choice is an individual one,and the illness is individual to you.Medication will help our symptoms,we can help one another more by sharing listening and learning,every post you make is an opportunity,
I am a PWP 8yrs,Nurse Midwife 30yrs taking agonist and levadopa,Meds work well life is good.My Neuro Nurse and GP well as I see it they look after me and I educate them.Take responsibility for your illness and health ,I do and my management isnt perfect any were near.Were a team not opposing players
Good morning PurplePixie,
If I may take your last paragraph first. I am also a long time PWP. I take my meds, some of which I have altered to suit me and informed Consultant of changes as a matter of record. I get on very well with Neuro Nurse, Consultant and GP. I have listened to them and they have listened to me. You are in the same situation re relationships with your medical staff.
This, unfortunately is not the norm. I wish it was. It would be great if we we all pulling together and share information to the general good. A fundamental change of attitude is required by both medics and patients in many cases. When I lived elsewhere the attitude of the medical staff was appalling. Cold, aloof and superior which begets a reaction from the patient provoking confusion, frustration and up the scale to anger.
Being a neuro must be one of the most bewildering jobs in the medical world. Every patient is different. The meds required are difficult to get right first time. From the patient's standpoint if the meds are not working or they are having a reaction that is bad then speak to the neuro, don't moan about it then shove the meds in a drawer. Constructive criticism is always welcome.
I know when I created this blog is would be controversial re the title and that was deliberate but even i was surprised by the response. I don't usually play Devil's Advocate but I did feel justified in doing so. I do wonder if any neuros have read any of the blogs. It would be nice to have them contribute and put their side of the discussion. Maybe I am expecting too much.
Thank you for your very informative input. In time, hopefully, common sense will prevail and we will all learn how to cope better with this syndrome.
I have been on other forums for PD but this is the best by far in my opinion.
WOW! I've had one neurologist who wouldn't listen or answer questions and I was so overwhelmed with my diagnosis, that I just took his attitude for 1 year. Then one visit, he said "I don't know" one too many times as I asked questions and led me out of the room by the arm. Needless to say I was in shock at his "polite" behavior and fired him. Found a new Movement Disorder Specialist that has been great for the past few years but he is starting a new wellness program for PWP that isn't covered by insurance, but is private pay. Sounds like if it takes off, people who can afford it will get his e-mail address, phone number, more specialized testing, more individual programming and recommendations, etc. Sounds like a great opportunity but expensive so I know I won't be in this group but will he continue regular patients...wait and see.
Hi fishinggirl,
There is a fundamentaly different approach to treatment and medication between US and UK.
MONEY. It's a no brainer.
In Scotland for instance, all medication and treatment is free regardless of age. Depending on where you live you may have to wait a while before seeing a consultant but most areas have a PD nurse who you can contact most days.
As you have said in the US everything medical has to be paid for either with insurance payments if you are lucky (?) or cash payments. This naturally leads to a two tier system - the haves and the have nots.
We in UK take such things for granted and we should be grateful that the American system has not been adopted in the country - at the moment. That's enough on that subject.
Good for you by voting with your feet and seeing another neuro. I hope your current neuro keeps his current number of patients. Please keep us posted. Meantime, go hook a big 'un.
from purplepixie the other day-
'So were do we go from here,do you wait at the bus stop or drive the bus..you can travel one stop or to the end of the route,and get on or off whenever,you wish or need to'
The point is we cant get off the bus can we ? We are on this bus for life and the sooner some people recognise this the better.... thanks drew for bringing this subject to the fore
I think the point purplepixie was making was that we can educate the medics by driving the bus rather than being driven by them.
We PWP's have a vast knowledge based on personal experiences which the medics can only guess at. On the other hand neuros are very knowledgable on medication but both sides need to listen and respect each other.
I would not like to be a neuro. It must be very frustrating for them but given the option of neuro versus PWP I'll take my chances with being a neuro!
I'm sure that some medical people must read these comments. It would be nice if they put their point foward to give us a better understanding of where they are coming from and their thought processes or am I just being naive?
Here is some food for thought, Why must we drive the bus? I have tried this and it got me know where. This is one thing I want to point out. The Parkinson's Association sends me a newsletter that talks about new findings in studies conducted with Parkinson's Patients. These same newsletters are sent to the same Neurologists that are treating us; which they should be aware of all the new findings related to Parkinson's Disease.
For example, I was having a tremendous problem with my cognitive function, so I brought it up to my Neurologist. I was told it was not a symptom of PD! So I went back through my files and found the article and took it with me to the next appointment. My neuro simply looked at my husbandk and me, then stated, "I guess I am just not smart enough to figure this one out." Thankfully I have different Neurologist now.
Also, here is something else that I have seen along the way to a diagnosis, I was told by one doctor, "Do you know what they call a doctor who makes the lowest score to get his license? Doctor!" I did not find that funny at all, but he thought was hillariaous.
I too would relish the thoughts of the medical staff to comment on this blog and all the statements.
Drew thank you for putting yourself on the line to start this blog. I don't think it is anyway harmful for us to tell our experiences. In fact, I hope it opens the eyes of our medical profession, so they are aware, we have questions, concerns, and a great need to be treated as any other patient. So please treat us respectfully and take time to tell us what can be done if anything with our symptoms. To talk with us, not down at us. To respect us and give us the best quality care they can.
JerriB
Hi JerriB
I assume the emphasis is on we for "Why must we drive the bus?"
By driving the bus you give yourself enpowerment and that is what you have done. You changed your neuro. Have you changed your doctor? Wouldn't be a bad idea. What he said is so not funny and does not inspire confidence.
At the end of the day I would like PWP's and medics to be able to discuss remedies, thoughts and ideas equally. My neuro and GP do but they are rare from what I have read not just on here but elsewhere.
So, if you are not happy with any of the medical peole who see you then change. If it upsets them that is not your fault. Drive the bus.
I found "driving the bus" very helpful.
I keep most of my information on the computer. Whenever I visit a doctor I have all my information, from other doctors, ready to share with them.
I feel I know my body better than anyone else, hopefully the doctor knows the medical side better than I do...a good combination.
Example: yesterday I had an endoscopy. I gave them a paper with my meds and the possible side effects of being put to sleep. It also explained what not to do and what to do if I do have a side effect. They seemed to appreciate it.
I felt more secure being "put under".
This site has truly helped me with my side of the equation.
That's exactly the sort of thing that we can all do. I got the idea from Purplepixie which allowed me to empower myself although I was half way there but with her knowledge base and help was able to see things more clearly. I am sure, like me, you felt much better and in control of the situation. If only everybody could see the value in doing things this way. If i was able to I would award you today's gold star. I bet you felt much better by your actions, I cetainly did.
How you manage your condition when not under direct medical supervision,which is MOST of the time makes a difference to your quality of life, your general health, and your usage of health services
Think about it 10-15 minutes appointments with professionals,whose really in the driving seat..
This isnt about keeping up to date with journals and advances its about understanding your bodies responses or not as the case maybe and getting the best out of the situation for yourself.
Self-management/self knowledge takes time and demands interest in short you need to educate yourself in the many complexities related to your illness,As I see it,youve got it. its not going to go away,your that bus driver.
This was not somewere I suddenly arrived at, it was years after diagnoses and living with PD now it lives with me.
These tasks include having the confidence to deal with the medical and emotional management of your condition.This is the difficult bit,in life without an illness its not easy to achieve.In our present system its not really promoted,or financially supported,making people well isnt a good long term investment.
Dont mistake what I am saying is not intending to undervalue medication or health professionalsbut it most certainly is easier and safer to prescibe care,than unleash you on yourself.
Accept we must not all want to choose this path and those who pursue it will graduate at different times,be it ten years or two .PwP are afraid to self manage,needing the reassurance of approval and the safety of direction from professionals.We forget a most important role,the patient as the educator,of professionals as well as fellow sufferers.There is some development in this direction.but in the main it is under-resourced and under researched.
The way forward with this one ,well its upto you,and whatever you choose be it right for you at this moment tommorow may be different,if its the only exersises you undertake are choice or acceptance it is always your own.
Absolutely right. Thank you PP.
Hi Drew. In my sincere opinion I do believe, to some extent, that the "medical fraternity" as you kindly described it here, does treat a patient's disease state more than the person at hand. Granted there's always some exception to the rules in anything that comes across us but there are medical professsionals that do look at the whole picture or patients as a whole. Unforetunately there may be only a few out there and not readily available. Without making or guessing on excuses, I believe that one's work no matter what it maybe eventually becomes one of a "knee jerk reflex" phenomenon where after years of work or practice one becomes less and less in-tuned with other's personal feelings and needs that eventually numbs the emotional state of sincerely listening to others with undevoted attention and to serve as their true advocate and, hopefully, find the best ways to help others as best he/she can. It's true their are multible factors involved that affects one's sense of helping others unconditionally. But I would have to agree, again with some exceptions, that anyone with a medical condition do experience the misfortune for being treated as more of a disease rather than a person who has a disease. I understand that a medical professional needs to remain objective for the majority of times and not let his/her emotions always mandate his/her way of caring and thus treating patients objectively. But I also believe that by following these professional work ethics one also learns by habit to become less in-tuned to patients needs and deep concerns.
Case in point: I recently saw my neurologist and was uncomfortable with his sense of bed side manners and attention and thought out care despite being a professional colleague. It was a perfect example of the 1991 movie with actor William Hurst in the movie called " The Doctor" where he portrays a distinguished and successful surgeon who succumbs to cancer and unfortunately gets the same realistic "friendly" and a "caring" type of a treatment by his own colleagues.without regards to his status and to his feelings as a new patient with cancer. I have come to learn and experienced first hand that no matter who you are or have become in your lifetime once afflicted with a major medical condition like PD then you are just another "number" patient in the eyes of your treating physician. I'm not insinuating that because one is a professional that he or she ought to be treated with utmost attention and better care than the general patient population, but when you are not even looked at or greeted with a sincere happy smile or yet asks how you're doing and feeling then I think there is a major issue at hand and the physician needs to step aside, question himself, and re-think about his main reasons for chosing to enter the field of medicine in the first place putting aside the needs for status, leadership and independence or financial status. Overall I believe many doc's in this specialty, but other specialties as well, are either bored with their careers, don't really care anymore other than their continual status and handsome income and/or have lost sight of their actual role as caring and meaningful physicians. Interesting note to add, but in one medical journal a recent poll was conducted that looked into doctor's profession overall and how happy and satisfied they were with their medical careers. One specialty that scored one of the lowest when asked how happy and sataisfied they were with their specialty or career were, indeed, our distinguished Neurologists. Hmmmm I wonder why?
Anyways, if I continue to receive this kind of an aloof, bad bedside manner doctor-to patient encounter and treatment with no attention or attempts to look into my medication regimen and adjust meds and/or dosages accordingly instead of just refilling my meds, then it's time to confront him personally as his patient and a colleague and lay out my level of patient dissatisfaction with his performance and care of and fire him on the spot with a follow up letter of discontent to his Dept chair person, hospital adm., and the Medical Chief of Staff.
To be all honest here, I think I'm just venting out about my last office visit appt. I had this past January and most likely I will avoid a confrontation and just quietly move on to a better and patient friendly neurologist physician than to go through all of this.but, who knows, maybe my occassional medication-induced vs PD manifestations or altered assertive behavior will set me off in motion and I will follow through with my firsts reaction.
In closing, I just like to say [ just being humorous here but also true] that I believe I just fullfilled my quota for the day with regards to polygraphia( excessive writing), another sign or our PD in the works. Take care all.
ma4PDCure. What you are saying is, in general terms, what most patients meet (although I reserve the right to defend my neuro )I won't mention his name - don't want to embarras him and anyway it is unethical, my GP, who I have educated to a degree . I'm nothing if not modest! Also my PD Nurse. Great people, caring, friendly I even get a cup of tea or coffee with the consultant (NHS remember - thuught I'd got BUPA Hospital first time by mistake). Sorry I'm rambling again.
I used to get the sort of treatment yoy talk abut when i lived elsewhere in UK and can understand your rant and wanting to give him/her a piece of your mind but my friend be cutious. Better the latter means of aquiring a new consultant. "They" may make it difficult for you otherwise and label you a troublemaker.
My tack is alway seeing them as equals. They have knowledge of meds. I have knowledge of what PD is like and am reasonably coherent so by combining this knowledge we come to a joint decision as to the way forward. I have said it before and I wil keep banging on about it. EMPOWERMENT how you fine tune your meds to suit YOU and not the medics. After all, the meds are going over your neck not theirs.
Whoops, just fell off my soap box.
Have a good Easter
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