September 24, 2014

My Healthcare Team and the Blood Pressure Crisis

This is the first installment of my report to my CEO (me) about lessons learned in resolving the labile blood pressure crisis. It reviews the performance of my healthcare team.
My General Practitioner
My GP seems to resent my eagerness to assume responsibility for my own welfare. I get the clear impression that this doctor wants to make decisions about my situation and my meds without partnering with me, the patient.

That approach just doesn’t cut it with me. From the start of my adventure with Parkinson’s five years ago, I’ve assumed a leadership role in managing my new medical reality. Doing so has made me feel more in control of what’s happening to me. I also know more about what's going on than my doctors do.

Just one example: For more than a year now, I've been dealing with an erratic blood pressure problem; the systolic (upper) numbers could vary as much as 100 points during a day. My GP takes my blood pressure, finds the systolic number is 170, and wants to prescribe a drug. An hour later, the number could have been 97. Who had the better information?

Even if I didn't have these issues with my GP, I'd still be looking for a doctor with a geriatric specialty. Very few of the studies underlying today's medical practice have included seniors, let alone the elderly. My current GP wasn't even aware of the current debate about whether people 80+ need to take blood pressure or cholesterol meds at all.

These days, I need my GP to be a good diagnostician, and I'm more likely to get what I need from someone with a focus on geriatrics. Specialists earn much more than GPs, which explains our growing shortage of general practitioners. Finding a GP with geriatric background is even harder.

Unless things change, the baby boomers can forget about finding a geriatrics-trained GP.

My Neurologist
This doctor fully supports my lead role in managing my healthcare. He tells me he thinks I'm an outlier in this regard... which I assume is a compliment.

He's part of Georgetown University Hospital's Movement Disorders Clinic which includes a unit that specializes in Parkinson's -- a big help to me.

Affiliated with this unit are physical therapists with special training in Parkinson's. I took the BIG exercise program designed for people with Parkinson's under the tutelage of my terrific physical therapist. Four years later, I'm still doing these exercises... well, some of them. I published a post last year that includes embarassing cell phone videos my therapist took of me doing those BIG exercises.

The movement disorder clinic also has ENT (ear-nose-throat) doctors who specialize in PD. I'll see one of them soon.

Living with Parkinson's means always facing new problems. I'm beginning to have trouble swallowing and projecting my voice. The Georgetown docs will test my throat muscles to see what's going on. After that, I'm sure I'll be encouraged to sign up for the LOUD exercise program, developed by the same people who created the BIG exercise program for people with Parkinson's. LOUD focuses on voice projection.

I've benefited greatly from the support of my neurologist and the Georgetown team. I'm lucky: they're only a 15-minute drive from the house.

Nevertheless, I'm scheduling an appointment with another specialist who is regarded by medical pros as the guru of all PD neurologists in the area. Receiving another perspective could be helpful.

My Blood Pressure Specialist
Years ago when I was having one of my many problems with blood pressure meds, I found a nephrologist (kidney specialist) considered quite the wiz with blood pressure issues.

We have a good relationship. I can communicate directly with him by email. He's happy that I take charge of my own medical care. He kids me about my 5-HTP craziness, which I like.

It's clear the medication he recommended -- nifedipine -- is taking care of the blood pressure spikes, which sometimes exceeded 200. Now, I get only a few readings above 150. The new blood pressure guidelines for those of us over 80 recommend numbers below 150/90.

This doctor is a keeper.

My nearest and dearest
They, too, are keepers. My daughter is a world-class researcher on health care issues; that's what she does on her job. My son is a world-class practitioner of common sense. The two of them, my housemates, and several good friends provide me with lots of loving support. They also give me something equally important -- challenges, questions, and suggestions.

I love them.


DeParkiePoet said...

Hello! I just found your blog and just finished 9/24. Well good luck with your adventure! I am a fellow traveler on the PD path, I take total responsibility for my health. I take many supplements, do eastern and western medicine, foods and exercises to keep Mr. Parky from ruining the Dance. I will write to you again.

Anonymous said...

I love your blog. I am a also a fellow traveler on the PD path and take responsibility for my own health. Since reading about Rice University and cinnamon my life has changed. I take 1/2 teaspoon of 4.5% oil cinnamon in applesauce every AM and it is as if I no longer have PD. NO lack of balance,no fatigue, no gait problems, no voice problems,writing fine,no sweating or oily skin,no constipation,no depression,no AM tremors.the rapidity with which it changed was remarkable,a few days time. I have had it for two years and was getting worse I am 72 and have always been in good health before.I had not started any medications (afraid of side effects)but have tried many diets with some slight good effects but never like the cinnamon.

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