Mary Ann and I both had appointments with the Cardiologist today.  We knew him as a parishioner before he became our Cardiologist.  We like him very much.  He is good.  Very good.  We are grateful that he is good since Mary Ann has so many problems associated with her heart and its functioning.  He is an important member of the team.  It is a team.  The team includes the Cardiologist, the Parkinson’s Clinic Neurologist, the local General Neurologist, the Gastroenterologist, the Primary Care Physician (General Practitioner),  the Nephrologist, the Ear, Nose and Throat specialist, the Dermatologist (who has removed her four Basal Cell skin Cancers), the Endocrinologist, her Physical Therapist, Speech Therapist, Occupational Therapist, Clinical Psychologist, two or three hospitalists, along with numerous medical technicians and nurses of all sorts, some seen only once, some who are practically like family.  We have great medical care.

Each of these people is very good at what he/she does.  Each has specialized in a certain body system or body part.   The Primary Care Physician has the largest chart for Mary Ann, but there is no way he can keep up with all the tests and treatments and medications with so many different people making independent decisions about what to do to treat the problem in their area of expertise.

Here is the obvious problem in this marvelous Team effort.  Mary Ann is actually a single living being who is not simply a gathering of independent systems and body parts.  She is a whole somebody.   Every system is connected to every other system, making up a single functioning human someone. 

Any of you who has been a primary Caregiver for a Loved One with Parkinson’s or any other chronic illness understands very well nature of the your role as a Volunteer Medical professional.  All those people listed above know more than I do about their area of specialty.  I know Mary Ann better than any of them.  I pick her up when she faints or loses her balance.  I know when those problems come in relationship to how much medicine she has taken and when.  I have discovered that when the recommended treatment for her heart is put in place, her Parkinson’s is unmanagable.  I know that when she has some major intestinal activity there is likely to be some fainting and maybe a time of mental confusion.  I know that if there will be a test done that demands her lying still, we need to skip the dose of her main Parkinson’s Med (brand name Sinamet) or the test will almost be impossible to accomplish, because of the dyskinetic movement that is now a side effect of that medication.  I know about how long we have to get from one place to another before she is likely to faint.  

One of the somewhat unique characteristics of Parkinson’s is that there is not much that is consistent and predictable. Medicine may work or may not work on a given day or at a given dosing time.  She may be able to walk long distances without fainting or faint sitting in a chair or immediately on getting up.  She may be up a dozen times on the commode during the night, or just a couple of times.  She may be wobbly or steady, sleepy or restless.  Even the best specialist in the field knows that one regimen of meds may work for one person but not another. 

Your Medical Degree is in the Mail!  You as the Caregiver actually serve as the Primary Care Medical Practitioner.  You need to know what medicine is being given for what symptom(s) and what impact it will have on the others.  The clearest example of the problem of competing treatments came for us when the treatment for Mary Ann’s Congestive Heart Failure and Cardiac Heart Disease stood in direct opposition to the treatment for her Parkinson’s.  The diuretics and low salt diet lowered her blood pressure.   The Parkinson’s meds lowered her blood pressure also, and the progression of the Parkinson’s compromised her body’s ability to adjust quickly enough to keep blood pressure high enough to stand up and remain conscious. 

Let me put it this way.  One doctor said, no pizza and Pepsi, the other one said, yes, pizza and Pepsi.  One treatment was to keep from retaining fluids, making the heart work harder, the other treatment was to keep enough fluids in her body to keep her blood pressure from dropping suddenly.  At one point I inferred from what the Cardiologist that the side effects (the dyskinetic movements) of her main Parkinson’s meds was threatening her heart’s health.  We stopped the Parkinson’s Meds and she turned to stone. 

Caregivers are advocates for the quality of life of their chronically ill partner.  In our case, the doctors we regularly use now understand the narrow margin of functionality within which we live. 

I wonder how many of you who are primary Caregivers have taken your Loved One to the doctor, only to be ignored by the staff and maybe even the doctor, treated as an annoyance who should keep your questions to yourself.  I do not have enough fingers and toes to count the times, either in doctor’ offices or hospital rooms that I needed to explain to the medical staff some of the very basic dimensions of Parkinson’s, the way meds should be given and what the side effects will be. 

Caregivers are the Primary Medical Technicians for their Loved Ones.  Don’t get angry about it, just do it.  Learn everything you can about the disease.  Go to workshops and support groups, whether face to face or online.  Write down the questions and demand answers in terms that you can understand.  Ask what every medicine is supposed to do, what its side effects are and how it will impact other problems and the medicines being taken for them.  Advocate for the best quality of life you can obtain, even if you run into some attitude along the way. 

Like it or not,  you are the Team Leader.  No,  you are not a doctor, you do not have the breadth of knowledge and training, but you know your Loved One better than anyone else.  You are an expert on his or her disease and its impact on your lives.  You see the whole person, not just the separate systems and body parts. 

Our experience has been that any time we have encountered a medical professional who is good, very good, who knows the area well, he/she has always been open and inclusive, listened well and explained well.  Seek them out.  They will help you find the best quality possible for and your Loved One in your time together, however long that may be.

If you have a story to tell from your experiences with medical professionals, tell that story here.  It might help someone who happens to find her/his way to this site.

By the way, today’s news from the Cardiologist was good news.   There has been no measurable deterioration, nothing new in the last six months.   For the moment, we get to keep our current normal.  We can live with that!

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