My Doctors and Me: an Update. 3) Back Pain

This is the final installment in a three-part review of recent visits to my three most important specialists. The first dealt with the latest in the semi-annual checkups I've been having for over 16 years with my urologist, Dr. Nicolas Constantinople, to monitor my prostate cancer. The second was an interview with my neurologist, Dr. Laxman Bahroo, during my last Parkinson's checkup.

Yesterday, I met with Dr. Thomas Heckman at Sibley Hospital's Pain Center to discuss my 13-month struggle with lower back pain. I'm still not certain what has caused it, and -- to put it mildly -- I'm eager to get some relief.

The Story of My Aching Back
Like so many others, I've been bothered by lower back pain and sciatica for years. But since working with a great physical therapist, Tom Welsh, for about five years, I've been pain-free... as long as I follow the simple exercises he recommended I do every day.

Everything changed when I totaled my car in August last year. I was taken by ambulance to George Washington University Hospital, where I spent several days in the trauma unit and was given all sorts of X-rays and other tests. The doctors concluded I'd injured my upper spinal column and prescribed a neck brace.

The pain was concentrated at a particular spot on the lower left side of my back, so I questioned the neck damage diagnosis. When I got out of the hospital, I went to an orthopedist who took new X-rays that showed a fracture on the L-1 vertebra.

That specialist said it would take about four months for the fracture to heal, after which I should be pain free. I went back for a checkup after four months, and new X-rays showed the vertebra had healed. But the back pain continued to emanate from the same spot.

He re-examined the X-rays and found a heavy accumulation of arthritis in the bones where the pain was centered. As a result, the orthopedist now attributed the pain to arthritis.

From the beginning, the arthritis diagnosis just didn't seem right. I had no back pain before the crash. The pain that started with the car crash remained the same. The only change was the diagnosis. Hmmm.

The Search for the Holy Grail -- 1. Sibley's Pain Center
A friend who'd had lower back pain recommended  a pain specialist at George Washington Hospital. It turned out he and his associate worked part of the week at Sibley Hospital, just a five-minute drive from my house and my favorite area hospital. So I got an appointment in January which the associate, the aforementioned Dr. Heckman, at Sibley's Pain Center.

Dr. Heckman reviewed the X-rays, the report from my orthopedist, and my GWU Hospital file. Then he recommended steroid injections to reduce the inflammation that accompanies arthritis and causes the pain. We tried them, but without success. Dr. Heckman said about two thirds of his arthritis patients typically benefit from the injections, and suggested that arthritis might not be the culprit. The origin of back pain isn't easy to identify, he explained. And in my case, X-rays showed not only arthritis, but also age-related deterioration in the lower spine.

Next, we tried trigger point injections (TPI). Trigger points are knots of muscle that form when those muscles don't relax. The doctor inserts a small needle into the trigger point and injects a local anesthetic that often includes a cortiscosteroid. The trigger point is then made inactive, and the pain goes away... if the procedure works. It didn't for me.

The lidocaine pain-relief patch came next. It's like a big Band-Aid applied to the skin over the pain spot. Europeans get about one fourth of their pain relief from patches or creams; the Chinese relieve about half their pain that way. In the U.S., we pop pills about 88 percent of the time for pain. For me, the result from this procedure was the same as all the others I'd tried so far: nada.

Next Up: Acupuncture and Reiki
Several friends told me that acupuncture had helped relieve their pain. This spring, a new wellness center opened in the neighborhood, just blocks from Sibley. It offered acupuncture, so this confirmed neophiliac signed on. The center also had a special introductory offer for reiki, the Japanese Buddhist hands-on technique designed to transfer healing energy from the therapist's hands to the aching body. So -- what the heck -- why not try that, too?

I was intrigued to learn that both the acupuncturist and reiki therapist were formerly practicing lawyers. The reiki practitioner had even worked as a legal editor at BNA (now Bloomberg/BNA), where I worked for 40 years. Small world.

I tried both therapies for several weeks. They were interesting and relaxing, but the back pain persisted.

I may take another look at acupuncture, however, since I saw a recent research study that suggests acupuncture may help treat Parkinson's.

On to Chiropractic!
Other friends said treatment by a chiropractor had helped them. I've seen the warnings: there are a lot of quacks out there, so do your homework first.

I was given the names of several chiropractors. During my first experience, the "quack alert" went off loud and clear as soon as I entered the facility. I paid for the introductory session and hurried out of there. The second facility I saw had a reassuring atmosphere of professionalism.

Until last week, I'd been getting chiropractic treatment three times a week for several months. At first, I thought I was sensing some pain relief. But I reminded myself that I'd felt the same initial "placebo effect" each time I'd tried a new procedure. I'm so desperate for relief, I readily delude myself into believing "this time I've found the cure."

A week ago after a more-aggressive-than-usual chiropractic session, I woke up the next morning with excruciating pain, unlike anything I'd experienced before. This distress persisted through several mornings. Finally, more than a week later, the sharp pain is abating.

I'm not sure there's a cause-and-effect relationship between the chiropractic session and the pain flare-up, but I'm re-evaluating the time and money I'm spending on chiropractic, especially since there's been no clear benefit.

So, Back to Sibley's Pain Center 
I decided last week that it was time -- probably well past time! -- to get back to traditional medicine. I was surprised to find that my last visit to Sibley's Pain Center was in early March. I had spent seven months on my alternate medicine explorations. The pain was still there. My sense of well-being had deteriorated, probably because I'd cut way back on my walks and other exercises.

When I got back with Dr. Heckman last week, he took another look at the X-rays and other data in my file. After we talked, he concluded there were several other possibilities, with different treatment options.

We decided to try a medial branch nerve block. The medial branch nerves radiate from the spine and carry pain signals from the spine joints. The X-rays suggested that two joints might be rubbing together.

The  procedure required X-rays to determine the exact location of the nerve before injecting something to deaden that nerve. Again, I felt mild relief the first day but -- like before -- wishful thinking may have played a key role.

I consulted with Dr. Heckman Thursday morning, and he now wonders if something other than traditional arthritis is the culprit. To get a fuller picture, I'm going in for an MRI this morning. We'll talk next week about where we go from here.

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!

This Blog Is Declaring a Presidential Debate Holiday

It's 5 a.m. I just finished my morning meditation and decided to declare today a blog holiday. I have a post ready to publish (part two of the three-part "My Doctors and Me" series), but I'm saving it for tomorrow. I want a blog-free evening tonight, so I can watch the debate and hear the pundits babble.

My Doctors and Me: an Update. 1) Prostate Cancer

Over the past few weeks, I've had several regular checkups:

• 1) with my urologist about my prostate cancer, 
• 2) with my neurologist about my Parkinson's, and 
• 3) with my doctor at Sibley Hospital's Pain Center about my back pain. 

As a result, I plan to write about these three areas over the next few days. Today: an update on my prostate cancer.

Prostate Cancer History
I learned about my prostate cancer in 1994. After reviewing options with my urologist (Dr. Nicholas Constantinople), I chose surgery. I had the prostatectomy at Sibley in early January, 1995. (I celebrated my 65th birthday in 1994 and retired after 40 years from BNA on December 31, 1964. So, the operation was my first use of Medicare.)

Post-operatve PSA tests indicated that some cancer cells remained. Fortunately, prostate cancer usually grows slowly, which proved true in my case. Since 1995, I've checked in with Dr. Constantinople every six months for both the "finger" and the PSA tests. That PSA reading increased slowly, from near zero in March, 1995, to over 4 in March, 2011.

Suddenly and surprisingly, the September, 2011 number spiked to 9.4! Urologists become concerned about a patient's prostate cancer when PSA readings double over the course of a year or two. Mine had more than doubled in just six months!

Dr. Constantinople didn't share my sense of panic. I was ready to hear him recommend hormone therapy or some other aggressive treatment. Instead he counseled, "Let's wait and see what the number is at your regular visit next March."

I was very relieved when the PSA test result this past March came in at 6.0. After these odd variations, I was anxious to see what my September visit would show.

September, 2012 Checkup 
The PSA test came in at 7.1. I was hoping for something a bit better, but in relaying the test result, Dr. Constantinople's assistant reported that the doctor had said this result was "in the normal range" for me.

I told my doctor that the big spike in September, 2011 had occurred less than a month after my car crash. I asked if the two incidents could be related. I wondered if the trauma of the crash -- and the resultant cracked vertebra -- might have played a part in the unusual PSA jump.

Dr. Constantinople said a connection was possible. Urologists and researchers have debated recently whether stress might contribute to elevated PSA readings.

So, I'm glad there's no hormone therapy or other aggressive treatment in my future. Maybe if I can resolve the back pain, the reduced stress level will yield a good PSA number at my checkup next March.

Dr. Constantinople on Recommendations to Cut Back on PSA Testing
Earlier this year, I reported on the U.S. Preventive Service Task Force's recommendation that routine PSA tests should be discouraged for healthy men. This was just one of several controversial recommendations made by the USPTSTF (an agency of the Department of Health and Human Services), which claimed the regular PSA tests were unnecessary, might actually cause harm, and certainly added needless burdens to the soaring cost of U.S. health care, the world's most expensive.

Shortly after the recommendation appeared, I asked Dr. Constantinople for his views. He thought the recommendation to stop regular PSA testing was "outrageous" and made these points:

• Before the regular PSA tests were adopted, 40 percent of men with newly diagnosed prostate cancer had cancer that had metastasized into their bones. That figure is now five percent.
• Regular PSA testing has resulted in detecting prostate cancer years earlier than before.
• Since regular PSA tests became standard, the mortality rate for prostate cancer has dropped 40 percent. The rectal finger exam catches the cancer much later, often after it has already spread into the bones.
• As for the argument that the test shouldn't be used for men over 70 (since most autopsies on older men show they have prostate cancer but die from something else), Dr. Constantinople cautioned that when men in their 70s or 80s are first diagnosed with prostate cancer, their disease is more likely to be the aggressive cancer that requires treatment, not "watchful waiting."
• In the early years of using the PSA test, patients were likely over-treated about 25 percent of the time. That number is significantly less now. "We still have to work at fine-tuning the test," he said.
• The "holy grail" in prostate cancer research is to find a way to determine which cancers are likely to be aggressive, and which are likely to grow more slowly. For now, there's no way to really know.

Dr. Constantinople defined the "bottom line" this way: most patients want to get the test and learn their results so they can then make informed decisions about their choices. Patients definitely need to know the pros and cons of all options, including the option not to undergo any treatment at all.

And in cases like mine -- with cancer cells remaining after removal of the prostate -- regular PSA tests are needed to track the progression of the cancer.

  

My Future Travels: Some Thoughts

In my last post, I reviewed my recent travel fitness. As my Parkinson's disease progresses, I won't be able to maintain the independent, do-it-myself variety of travel I've always preferred, particularly now that lower back pain is part of the mix.

I was wondering what's in store for me down the road when I picked up the The Art of Ageing by John Lane. It's a delightful, warm, inspiring little book by a Brit my age who seems to have shared my lifelong love of travel. Here's how he sees it now:

Years ago I took delight in traveling. There was my discovery of India, from which I have yet to recover; and the old, the traditional Japan, hardly less stimulating. In different years, I have traveled to Russia, Lithuania, Thailand, Morocco, Cambodia, New Zealand, Sweden, Australia, and the United States. I now find the contemplation of a few yards of autumnal hedgerow to be enough....

I am relieved to discover that although some facilities are closing down (packing up is probably the better description) other things -- inner things -- are quietly taking their place.  My relationship with the world is shifting from "outer" to "inner" concerns. Joy, silence, stillness and contemplation are becoming more important; making, doing, and rushing around becoming much less so.

I'm about halfway between the hyperactive travel addiction of my earlier years and Lane's serenity with a more sedentary life.

I've always felt an aversion to group travel and cruises, but I'm considering taking a look at these options. Though I've traveled extensively in Europe and Asia, the furthest south I've ventured in our own hemisphere is Costa Rica. Maybe I'll try a South American cruise this winter. And a cruise to Alaska would make a great escape from the heat and humidity of another Washington summer.

I also wonder if river cruising might be more to my liking. A neophiliac, I always like trying something new.

And this weekend was an example of how pleasant time at home here in DC can be. The fall is my favorite season in Washington. My ten years of traveling to Nepal at least once and usually twice a year meant that I missed a month or so of fall in D.C.  So I thoroughly enjoyed a Saturday spent almost entirely at home, most of it either working in my garden or (more often) just sitting on my back porch contemplating it.

Aren't too many places I've seen on my travels much lovelier that this view from the porch:

I Needn't Leave Home To Find Novel Adventures

As a confirmed neophiliac, I love traveling to new places or trying new things when I've visiting familiar spots. For example, here I am in New York City's Times Square in July 2011:

But even if I stay home, even after 57 years here, I can still find something new to try in D.C.  Today, for the first time, I went to the "drag queen brunch" at Perry's restaurant in D.C.'s Adams-Morgan neighborhood:

So wherever I am, there's always something new to try. And there's nothing wrong with exploring more contemplation and less charging about.

Traveling with Parkinson's

In September, 2009, when I was 80, my doctor told me I had Parkinson’s.

Among the many things I wondered that day was: How would this new diagnosis change my lifelong love affair with travel?

Here’s the partial verdict thus far: not so much. At least not yet.

In May, 2010 -- within a year of that revelation about my health -- I journeyed for three weeks in Turkey. It was a rigorous adventure, and I spent days walking the crowded sidewalks of Istanbul, exploring the haunting ruins of ancient Greek cities along the Aegean coast, and hiking up and down the hills of Cappadoccia in central Turkey. I didn’t see many people my age in the remote places I visited, and I felt pretty good about that.

For the first time in my life, I used a cane – the collapsible, travel variety – on a few of the most arduous hikes. And I found the cane came with an extra bonus. Ten minutes after I entered a spectacular cave church -- the "Dark Church" -- in the Goreme Open Air Museum in Cappadoccia, the small space filled with a big tour group that completely  filled the place. Eager to escape the crowd, I bent over and stepped forward, holding my back with one hand, and maneuvering with the cane in the other. I felt like Moses fleeing Egypt, as the sea of tourists suddenly parted, and I made a quick escape.

Here's that cane, temporarily out of service as I snap a picture

in the rugged Honey Valley, Cappadoccia, Turkey.  

In June, 2011, I spent a momentous weekend in New York City. Quite by accident, I was there when Governor Como signed the Marriage Equality Act into law. As if those celebrations weren't enough, the city also hosted the Gay Pride parade that same weekend. I walked everywhere – no doubt fueled by adrenaline and buoyed by the uplifting spirit of the time – and felt fantastic.

Here I am at the Gay Pride Parade as the SAGE 

(Service & Advocacy for GLBT Elders) contingent marches by.

In August, 2011, I spent three weeks on the road in northern California and the Pacific Northwest. For much of the time, I was a happy passenger in a comfortable car, but there was still lots of walking – in Yosemite, around Mt. Hood, Crater Lake, Mt. Ranier, and in Seattle, along Oregon beaches, and in San Francisco. Essentially, that trip seemed effortless to me. At 82, I kept thinking about that wonderful experience as “the trip of a lifetime.”

I should have stayed out west! Right after returning home, I totaled my car, injured my back, experienced a 5.9 earthquake from my hospital bed, and endured a hurricane.

In March, 2012 – seems hard to believe it’s half a year ago already – I journeyed back to my beloved Nepal to attend the wedding of Nimesh and Bhawana. (The bride and groom are now comfortably settled in with me here in Washington.) The Kathmandu portion of that trip was packed with wedding events, and – aside from some mild fatigue and a stomach upset – I felt good. The hardest part of the Pokhara portion of the trip was saying goodbye to the people there I love. I don't like thinking I may never see Nepal again.
.

I accompany the groom (Nimesh) on his ride to the house of the bride (Bhawana).

Two grandfathers holding hands. That's Nimesh's granddad.

Here I am, ready to leave for the Pokhara airport with Laxmi and 
Rahel, who traveled with me to join Ramesh in the U.S. 
I'm saying a sad goodbye to Laxmi's mother and Ramesh's mother.

Then, over the recent Labor Day weekend, I traveled to New York City with Nimesh and Bhawana. I’ve been there dozens of times and was eager to see how I’d fare this time, especially compared with my hyper-active weekend there just last summer. The contrast was dramatic. Walking was much harder this year, but not because of my Parkinson's. This time, it was my back pain that caused the trouble. But being with my young housemates certainly made everything easier for me.

While I feel lucky to be doing as well as I am, I'll need to make some changes when I plan future travels.  Parkinson's is a progressive disease, so my range of travel options will certainly shrink. The travel recommendations below for people with Parkinson's may help me as the years roll on. Maybe they’ll be useful to you, too.

Resources: TRAVELING WITH PARKINSON

• Parkinson's Onboard: Traveling with Parkinson's: These excellent recommendations come from the National Parkinson Foundation.
• Traveling with Parkinson's Disease: This link provides some great suggestions. Leave it to WebMD.
• Traveling with PD: Here’s a column from PWP Peggy Willocks about her own travel experiences.
• Traveling with Parkinson's: This writer discusses his travel experiences as caregiver for his wife, who has PD.
• Tips for Traveling with Parkinson's Disease: Dr. Patrick McNamara offers these suggestions on About.com (part of the New York Times company).
• Traveling with a Parkinsonian: Susan Hamburger lists some helpful travel ideas for caregivers.

There are many more links. Just Google “travel with Parkinson’s disease.” How on earth did we ever manage before the internet made info collection so easy?

Mark Bittman: "Is Alzheimer's Type 3 Diabetes?"

Yesterday, I wrote about diabetes and Alzheimer’s.

Today, I noticed a burst of internet comments about an article published online yesterday by the New York Times’ well-known food writer Mark Bittman. The title: “Is Azheimer’s Type 3 Diabetes?”

While Bittman isn’t a medical scientist, he knows food. And in his thoughtful piece, he explains the role that food plays in brain health.

We’ve always asked, “If you could improve your health and appearance by eating more thoughtfully, would you?” Now, Bittman suggests, we should ask, “If you could preserve your brain function and sharply limit your risk of dementia and Alzheimer’s by eating more thoughtfully, would you?”

Bittman discusses junk foods, sugar, glucose, insulin, the different varieties of diabetes, brain plaques, dementia, and Alzheimer's. He knits together an explanation of how these issues are connected.

As I mentioned in my post on Monday about K.I.S.S (“Keep It Simple, Stupid”), in matters of health, it so often comes down to diet and exercise. Now, fearing dementia as I do, I feel like I have even more reason to be careful about my diet.

Bittman’s brief article is worth the two minutes it takes to read it. Maybe it will help strengthen your dietary resolve, too. Mark Bittman: Is Alzheimer's Type 3 Diabetes?