October 4, 2012

My Doctors and Me: an Update. 2) Parkinson's Disease

This is part two in a series of updates about recent visits to my three most important specialists. Tuesday, it was my urologist, Dr. Nicholas Constantinople, about my prostate cancer. Today, it's my neurologist, Dr. Laxman Bahroo, about my Parkinson's.

Dr, Bahroo is one of the staff doctors in the Department of Neurology at MedStar Georgetown University Hospital. My regularly scheduled appointment with him was Tuesday morning, when we discussed several topics:

Parkinson's and Alzheimer's and Dementia
Since serious cognitive impairment is my biggest fear, dementia and AD came first on my discussion agenda. Dr. Bahroo said the data indicate that about half of all Parkinson's patients develop dementia five or more years after their diagnoses. But he emphasized that both PD and AD/dementia are highly idiosyncratic. He knows patients who show signs of dementia within a year or two of PD diagnosis, but he knows others diagnosed more than 15years ago who show no cognitive issues. (The moderator of my Parkinson's support group has lived with PD for 25 years and is as sharp as can be.)

Since I was diagnosed exactly four years ago, I asked Dr. Bahroo about my chances for developing dementia down the road. I was reassured when he said my prospects for forestalling it were good. He's seen no signs of cognitive impairment in any of my checkups. I'm scheduled for another memory test in January; he administers such an exam at least once a year.

He said I'm an outlier on the bell-shaped curve for Parkinson's and dementia. As you picture a standard bell-shaped curve, the diminishing tails on either side of the big middle bell represent outliers. People on the tail tapering to the left show signs of dementia soon after their PD diagnoses. People in the middle of the bell represent the 50 percent who develop dementia five or more years after their PD diagnoses. Those on the right-tapering tail don't show signs of cognitive impairment for many years, if ever.

Dr. Bahroo emphasized that he sees me as an outlier for important reasons:
  • From the start, I've taken an active part in managing my PD and general health.
  • I exercise. At Dr. Bahroo's early recommendation, I took classes at Georgetown Hospital's physical therapy department in the BIG exercise program, specially designed for PWPs. (See http://bit.ly/wNLH7e.) I found them a BIG help and stuck with this program longer than I usually do.  Unfortunately, I've used this past year's lower back pain as an excuse to neglect the exercises. 
  • I lead an active, engaged life: researching and writing the blog, traveling, maintaining social interactions with family and friends, etc. 
Not everyone stays so active and engaged, Bahroo said. And they often suffer the consequences.

Parkinson's, Prostate Cancer, and Melanoma
I asked Dr. Bahroo about the recent study (http://bit.ly/RyGM2I) that showed strong genealogical evidence linking PD with prostate cancer and melanoma. I have Parkinson's and prostate cancer, and I've been treated twice for melanoma since my PD diagnosis.

He said nobody knows if there's a cause-effect relationship here or just an association. He noted that more men than women get Parkinson's (about three men to two women), and both PD and prostate cancer involve mostly older men.

The link between PD and melanoma has been known and studied for some time. The Michael J. Fox Foundation is funding research to determine if the elevated risk of melanoma for PWPs is caused by having PD or by taking levodopa, the gold-standard med for treating Parkinson's. Levodopa is also used to make the skin pigment melanin.

Parkinson's, 5-HTP, Azilect, and other Compounds
After my PD diagnosis, I found that the serotonin-boosting supplement 5-HTP helped me deal with the insomnia, depression and constipation that often accompany Parkinson's. I touted it to Dr. Bahroo, and he suggested to several of his newly-diagnosed patients that they might want to try it. But he's found no indication that 5-HTP worked for others the way it worked for me. I had the same experience after urging friends and family to try 5-HTP (http://bit.ly/LRlYvu).

I asked Dr. Bahroo about Azilect, by far the costliest of all the meds I take. He said Azilect is prescribed for treating Parkinson's because it has been shown to slow the breakdown of dopamine, a deterioration that causes the symptoms of PD.

A few years ago, a study was funded by Azilect's manufacturer, Teva Pharmaceuticals, to determine if the drug not only treats the symptoms of Parkinson's, but also slows the progression of the disease. Study results were ambiguous, and an FDA panel later voted unanimously against approving  prescribing Azilect as a treatment for the underlying disease.

Using Azilect to treat the symptoms of Parkinson's comes at a steep cost. I just checked with my AARP Medicare Plan, which estimated that my prescription for 1mg of Azilect -- taken once a day -- would cost $1,666 for the year. This one prescription takes me more than halfway toward the $2,930 of total annual drug costs that marks the end of Medicare's coverage and pushes me into the so-called "donut hole," at which point I'm on my own until Medicare coverage kicks back in when my annual drug costs hit $4,700.

As of the end of September, I was well into the donut hole, having amassed so far this year a total drug bill of $3,250.

In my internet research, I found that many doctors prescribe 0.5mg of Azilect. So, a few months ago, I got Dr. Bahroo's permission to cut my 1mg pill in half, which saves me money.

I asked when a generic for Azilect might become available, and Dr. Bahroo replied "2017." Maybe I should buy some Teva Pharmaceuticals stock.

Answering another question, Dr. Bahroo said no other supplement or compound has been shown to help in the treatment of Parkinson's.

But he didn't dismiss the possibility that curcumin might help treat PD. Born in India, Dr. Bahroo is well aware of the health benefits attributed to turmeric (curcumin is the active ingredient in turmeric, the popular curry spice).

Me and My Parkinson's
Dr. Bahroo checked my hand and leg movements for signs of PD-related rigidity and found no problems. I told him I've recently experienced more balance problems, and figured he'd probably want to increase my regular dosage of levodopa/carbidopa (unchanged in my four years with PD) as a result. Instead, he said I should exercise more, not increase my medication.

He gave me a prescription with the physical therapy department to get me back into the BIG exercise program. No pain, no gain!

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