Shake, Rattle and Roll

Don’t Be a Martyr

Martyrs, my friend, have to choose between being forgotten, mocked or used. As for being understood: never.  Albert Camus (1913-1960) French novelist, essayist and dramatist

I first felt the hip pain in my left leg in May when I limped around Texas while visiting my niece, Amanda, at her high school graduation. The pain persisted as I went about my day-to-day activities. The pain intensified after a marathon-like dance rehearsal and performance on June 11. In July, after waiting a month for an appointment, I was finally able to see my primary care doctor. I was diagnosed with trochanteric (hip) bursitis and given a handout of exercises to perform. I was conscientious and performed them daily. I attempted to give my hip leg a rest in August, but resting has never been my forte. In September when the dance classes resumed, I didn’t want to miss my big birthday shindig so I danced through the pain. Our last dance performance of the year was on December 15, with a three week break until classes resume in January.

The hip pain became intolerable. I called my doctor’s office on December 16.

“Your doctor is out of the country for a month,” the nurse reported.

“I’ll see anyone,” I snapped back. By then the pain was excruciating, and I would have been willing to see the janitor if he was the only one available on the care team.

Two days later, I went to a salt-and-pepper haired doctor complaining once again about hip pain. He understood as he had treated hundreds of patients before with similar problems. He suggested treating the bursitis with a cortisone injection. I was desperate and consented to have the injection. Within less than five minutes, the relatively painless procedure was performed.

Coincidentally, when I arrived home yesterday, I received an email from Carolyn, who went with her husband to a physical therapist (PT) for a similar problem the same morning. Carolyn reported:

"The PT who is a specialist in balance and gait in Parkinson’s patients, told us that the research over the last 10 years makes it absolutely clear that the only way to get rid of this bursitis is a cortisone shot followed by ice and complete rest: NO repetitive motion or even any PT exercises. Just rest. She also said that if you don't get rid of an acute case, scar tissue forms, and then you have it all the time."

So yesterday, I put ice on my hip and attempted to “just rest” (the most difficult prescription of them all). I woke up this morning feeling GREAT like my old pre-bursitis self.

Moral of the Story: If you think you have a medical problem, pursue it until you can find a solution that you can live with. Don’t be a martyr.

Further information on trochanteric (hip) bursitis: http://www.medicinenet.com/hip_bursitis/article.htm and http://my.clevelandclinic.org/disorders/Bursitis/hic_Trochanteric_Bursitis.aspx

Speechless

He was my favorite person at Toastmasters when I was a member 13 years ago, at the time of my Parkinson's diagnosis. He was vibrant, talkative with a slight southern drawl and a folksy sense of humor. We both had become quite competent public speakers.

When I arrive home from the DBS support group last Friday, I see his and his wife's name on my phone's caller ID. I pick up the phone to retrieve the message but there is none. I turn on my computer and discover that his wife has sent me an email. She says that I wouldn't recognize her husband and that he has Primary Progressive Aphasia. I'm speechless.

Primary Progressive Aphasia (PPA) is a rare motor skills degenerative disease with no treatment and no cure. She says he is dizzy all the time, very thin, talks very little, cannot communicate verbally or in writing, walks with a cane, goes to bed at 7 PM, sleeps in a twin bed in the computer room on the main floor, has balance problems, and creates holes in the walls of their home due to his falling. Their son has moved back home to share her caregiving load. Again, I'm speechless, and relieved to respond by email and not have to formulate the right words of support in person.

Her world has narrowed to taking care of him before work, going to work, and taking care of him after work. She is articulate in describing what it's like for her, yet I am clueless about how difficult it must be and don't know how to respond.

For the past five years, their lives have been consumed by appointments with neurologists, MRIs, and PET scans. They finally found a neurologist who "wants to get to the bottom of this" instead of all the others with a "there is nothing we can do" attitude. The neurologist obviously knows what to say despite the dire prognosis.

I am a compassionate person, but with Parkinson's, I occasionally can't string the right words together at the right time. I have no idea the pain and frustration they must experience when he can't communicate and is totally speechless. 

More information on Primary Progressive Aphasia can be obtained at: http://www.aphasia.org/Aphasia%20Facts/primary_progressive_aphasia.html

When Families Managed Their Own Health Care

In the 1950s, bumps, bruises, scrapes, sniffles, sore throats, stomach aches, indigestion, fevers, headaches, coughs, colds and growing pains were all managed at home. For delightful memories about the home remedies of the 1950s, check out Liz O’Brien’s story, Watermelon Chunks and Mercurochrome Bunnies, in Medpage Today Staff Blog at: http://www.medpagetoday.com/Blogs/15629

                          

             

                      

 

                                        

A Sarcastic Look at Health Care Reform

Check out the blog post by Dr. Wes entitled Open Letter to Patients Regarding Health Reform. He has my kind of sarcastic humor.

HIPAA Hassles

 HIPAA is not a female hippo.

In 1996, a federal law took effect at all hospitals and healthcare facilities – the Health Insurance Portability and Accountability Act (HIPAA). This act sets national standards to protect the privacy of patients' personal health information and patient rights.

All patient information (name, diagnosis, condition, address, discharge date and treatment) must be kept confidential unless the patient gives his or her permission. The patient confidentiality acronym is “KITTY” or “Keep it totally to yourself.”

It seems that everyone is more concerned about preventing law suits than providing excellent patient care. Perhaps I am naïve but I trust doctors and assume they are looking out for my best interest if they discuss my medical situation with others.

When Kaiser made me complete yet another HIPAA form, I put a big X on all of their options and wrote in:

I give my permission for you to tell anybody and everybody, anything and everything about my medical condition or whatever else you want to tell them.

I should have said "except for my weight." Being a difficult patient, "patient refuses to weigh" is frequently recorded in my patient chart. No one would get accurate information on my weight anyway. Perhaps I am a female hippo.