October 9, 2016

Vitamin B12: Treating My Peripheral Neuropathy?

Back in March, I started a new exercise routine. I'd ask whoever was driving me around on errands to let me off at the top of the hill leading down to my house. Then I'd walk home down the hill -- about 1/2 mile -- without using my cane or walker. OK, it's not a marathon, but it was great exercise for me.

Then came the shingles attack, followed by the Summer from Hell, when Washington's heat and humidity left me with barely enough energy to walk around the house.

Even with September's cooler weather, I still didn't feel up to this challenge. But in the past week, I began taking the 1000mg of vitamin B12 prescribed by my neurologist to deal with my newly diagnosed peripheral neuropathy (http://bit.ly/2dqEa7p.) Within a few days, my gait seemed to improve, so I decided to see if I could resume making this downhill walk after a six-month hiatus.

I was delighted to discover I could. This past week, I've taken the walk four times. Last Thursday, I had a doctor's appointment just over the District line in Bethesda, Maryland. I was feeling good, so I decided to walk the three or four blocks to the District line. Encouraged, I kept walking another five blocks before I finally called Uber. But I recovered quickly on the ride home, and even asked the driver to let me out so I could make that familiar downhill stroll back to the house.

October 2, 2016

Peripheral Neuropathy: An Overlooked Adverse Effect of Long-Term Use of Carbidopa-Levodopa for Parkinson's

“Did we miss something? Is it conceivable that for 40 years we have overlooked an insidious long-term levodopa treatment adverse effect, such as neuropathy, in idiopathic Parkinson's disease?" -- from the online journal "Neurology

"This intriguing study demonstrates a somewhat unexpectedly high prevalence of peripheral neuropathy in Parkinson's disease patients…. Peripheral neuropathy in Parkinson's disease could substantially contribute to gait disturbances and disability in some patients with Parkinson's, and prevention of peripheral neuropathy would be an important advance." -- from the online journal "Medscape

Toward the end of this past “Summer from Hell,” I started to wonder if some of the malaise I was experiencing might be due to something other than Washington's summer heat and humidity. As I mentioned in a recent post, one of my questions was: “Might I be experiencing peripheral neuropathy (PN)?"

A test last month by my new neurologist confirmed that I did have PN. Blood work also showed a vitamin B12 deficiency, not unusual for people with PN.

Normal values for vitamin B12 are 200 to 900 picograms per milliliter (pg/mL). Older adults with vitamin B12 levels between 200 and 500 pg/mL may also have signs of vitamin B12 deficiency. My reading was 346 pg/mL

When I started researching this subject, I was surprised to find studies like the two cited at the top of this post. I hadn’t known that Parkinsonians like me who are longtime users of carbidopa-levodopa (brand name Sinemet) often end up with peripheral neuropathy.

September 19, 2016

My Kathmandu Family Returns to Nepal To Celebrate Nivah's "First Feeding"

As I wrote in my last post, my love affair with Nepal -- which started in 2001 -- has generated two sets of relationships that are so close and loving that I think of them as my "Pokhara family" and my "Kathmandu family."

Last time out, I gave an update on the Pokhara family. So today here's:

My Kathmandu Family
This family connection was born in a bookstore in Thamel, Kathmandu's tourist district. All my trips to Nepal -- over a dozen of them -- began and ended with a few days in KTM.

Every day I was there, I'd buy the latest edition of the International Herald Tribune at the same family-owned and operated bookstore.

I got to know the family quite well. The younger son, Nimesh, came to the U.S. to attend Truman University in Kirksville, Missouri. He worked in Ocean City, Md. during his college summers and often spent a few days at my house on his travels back and forth.

After getting his undergraduate degree at Truman, Nimesh enrolled in an MBA/Finance program at American University. AU is within walking distance from my house. So Nihesh stayed here.

He continued to reside here at the house as he began a career at the World Bank in downtown DC, an easy commute from the house.

From Friends to Family
Through these years, Nimesh and I became good friends. But I didn't think of us as family. That relationship began in March, 2012, when Nimesh married Bhawana in a traditional Nepali/Hindu ceremony in Kathmandu.

This was also a traditional marriage, since their parents had made the initial arrangements. But there was a modern twist: both sets of parents encouraged the couple to spend a lot of time getting to know each other. The parents said they wouldn't insist on the marriage if the prospective bride and groom didn't feel it would work.

Bhawana was finishing up her studies in an MBA/Finance program at the University of Wales satellite school outside Mumbai. She and Nimesh spent hours talking on Skype. As this picture shows, the arranged marriage became a love marriage.

Often during those happy festivities, I was treated like a member of Nimesh's family. One of the first things that happens in Hindu weddings is the trip that the groom makes to the wife's home for the "engagement." For upscale weddings in India, the groom often makes this trip riding an elephant.

September 16, 2016

My Pokhara Family's Comings and Goings

As readers of this blog know, I've had a 15-year love affair with Nepal and its people. It started with my first visit to Nepal in March, 2001. My London pals Terry and Patrick and I added a few days in Nepal at the end of our tour of India in February, 2001.

Our brief time in Nepal was divided between Kathmandu -- the crowded, bustling capital -- and Pokhara, the beautiful lakeside city surrounded by snow-capped mountains. Pokhara is the jumping-off point for treks in the Annapurna mountains.

I maintained email contact with several people I met on that trip. One of them, Ramesh Pariyer, invited me to return to Nepal in the fall and accompany him to his mountainside village for the celebration of Dashain, the country's biggest, longest, and most auspicious festival.

That journey was the most memorable and enjoyable trip in a lifetime filled with travel adventures. I returned to Nepal at least once -- usually twice -- every year until 2008, when my Nepal connection began to shift into reverse as more and more of my Nepali friends relocated to the U.S.

I now have many Nepali friends here and back in Nepal. Two of those local relationships have become so close that I think of them as my Pokhara family and my Kathmandu family.

Here's the Pokhara family enjoying an outing with me on the island in Pokhara's Lake Fewa. Left to right are Laxmi, Rahil, Ramesh, and the aging "white monkey," a moniker given to Westerners by some Nepalis.

And here they are more recently. The family is wearing Nepali attire, but the photo was taken near their apartment in Washington's Maryland suburbs. Above, Rahil was all dressed up to celebrate his third birthday. Below, he's as tall as his parents:

A Sad Farewell
Here's a shot taken a few weeks ago in my home office. With me are Ramesh's parents, who -- in their first trip outside Nepal -- had spent several months visiting Ramesh and his family in Maryland.

September 6, 2016

Peripheral Neuropathy and Parkinson's and Me

When I was diagnosed with Parkinson's disease (PD) in September 2009, my doctor prescribed the gold standard med -- carbidopa-levodopa (brand name Sinemet).

At first, I took two pills of the regular carbidopa-levodopa 25-100 three times a day, and the dosage has increased several times since then. Now, I take two pills of the extended release carbidopa-levodopa 25-100 seven times a day.

My disease no doubt will continue to progress, but I’ve reached the maximum recommended dosage of the drug. Recently, I've noticed that the Sinemet isn’t working like it used to. My "off periods" between doses have increased, and I certainly don’t walk as well as I did six months ago.

In addition, I'm having more frequent incidents of orthostatic hypotension and strange flare-ups of incontinence. Washington’s summer heat and humidity bother me more than ever, and -- for the first time -- I'm experiencing occasional bouts of depression.

I'm not a happy camper. Questions abound.

Is some of my malaise due to the lingering effects of my shingles attack? Since I’ve clearly had PD for at least ten years, are these troubling developments simply signs that the disease is moving into its final stages? 

Are things going on that my doctors and I haven’t yet identified?

Peripheral Neuropathy
That last question brings me to today’s topic. In rereading some of my medical records, I was reminded that one of my PD doctors had wondered whether I was experiencing peripheral neuropathy (PN) in addition to Parkinson's disease.

A Google search on PN produced this info from the Mayo Clinic:
If autonomic nerves are affected, signs and symptoms might include:
  • Heat intolerance and altered sweating
  • Bowel, bladder or digestive problems
  • Changes in blood pressure, causing dizziness or lightheadedness
I certainly recognize those bullet points.