October 30, 2016

Identifying Five Different Types of Parkinson's May Lead to Varying Treatments

I'm a member of the online discussion forum sponsored by HealthUnlocked for people with Parkinson's disease (PD). I wish I had more time to spend exploring the site and participating in some of the discussions. But I monitor it regularly because I often find useful information.

For instance, one of the members recently shared an interesting video of a talk by Dr. Michelle Hu from the Oxford Parkinson Disease Center. In that video clip, Dr. Hu describes how the center's work led to identifying five different types of PD.

Parkinson's is a uniquely heterogeneous disease. As a member of a weekly Parkinson's support group for the past seven years, I've been struck by the wide variety of ways in which the disease manifests itself.

Yet all too often the medical profession adopts a one-size-fits-all approach to treatment. Dr. Hu hopes that identifying PD patient subtypes will lead to more individualized -- and effective -- treatments.

The Oxford researchers identified about 700 patients recently diagnosed with PD. They were assessed according to:
  • Psychological well-being -- apathy, pain, fatigue, anxiety, depression.
  • Non-tremor motor features -- stiffness, rigidity, speech, balance, swallowing.
  • Memory and cognitive features

Five Types of Parkinson's Patients
Analysis of the data resulted in identifying these subgroups:
  1. Patients who were generally doing pretty well with only mild motor and nonmotor symptoms (30 percent)
  2. Patients with poor posture, gait, sense of smell, and poor memory (22 percent)
  3. Patients with severe tremor problems but otherwise okay (24 percent) 
  4. Patients with poor psychological well-being, and rapid eye movement sleep disorder (15 percent)
  5. Patients with severe motor and nonmotor disease and poor psychological well-being (10 percent)
If I had been tested by the Oxford researchers early in my PD, I'm sure I would have been classified as group 1.

I found Dr. Hu's talk interesting. Here it is:




October 27, 2016

The Barnes Museum: More Is Most Definitely Less, IMHO

I put my current feeling of revived energy and spirit to a real test this past Wednesday. With lots of trepidation, I had signed up for a one-day chartered bus excursion to Philadelphia to see the Barnes Museum, which opened a few years ago to house the incredible art collection owned by the Barnes foundation. 

The trip was sponsored by our neighborhood Palisades Village and several other "villages" in Northwest Washington. These villages are found in urban communities throughout the U.S. where older residents band together to help elderly neighbors "age in place."

My pal Marianne picked me up at 8:45am. We drove to the parking lot for DC's Lord & Taylor store where we boarded our bus for the three-hour drive to the museum in Philadelphia. 

We spent almost five hours at the museum. I got home about 9:30pm, pretty exhausted... but pleased I'd gotten through the long day without any real trouble.

Background on the Barnes Collection

The Barnes Foundation was begun in 1922 by Albert Barnes, a wealthy scientist who collected what is now considered an incomparable collection of post-impressionist and modernist art. 

Valued at about $25 billion, the collection includes 181 Renoirs, 69 Cezannes, 59 Matisses, 46 Picassos, 16 Modiglianis, and seven van Goghs. Barnes collected this European art before it was popular in America, and he collected the best of the best. With the help of educational philosopher John Dewey, Barnes founded the Barnes Foundation as an educational facility in Merion, PA, near Philadelphia. 

The Barnes collection was primarily used as an impressive teaching aid for students. The Foundation admitted a limited number of public visitors two days a week, but visitors were second-class citizens compared to the students.

Barnes protected his vision for the collection in his will. The art could not be sold, reproduced, loaned, or traveled. The school would continue. There were slight concessions to public visitation, resulting in attendance of about 60,000 per year.

October 25, 2016

My Prostate Cancer: I Wish I'd Chosen "Active Surveillance" -- not Surgery -- in 1995

Most men in Sweden with low risk cancers are now opting for surveillance rather than quick invasive treatment… and more American men should make that same choice, according to a recent report.

Combined with my personal experience, this news is just the latest in a series of reports that have convinced me that the quality of my life would have been greatly enhanced if I had not decided to have surgery after my 1994 prostate cancer diagnosis.

Study of Men in Sweden
In a study of nearly 33,000 Swedish men diagnosed with very low risk (stage T1) prostate cancer between 2009 and 2014, those subjects who chose “active surveillance” increased from 57 percent to 91 percent during those years.

"For men who were diagnosed with low risk prostate cancer, it is important to know that active surveillance is an accepted way to manage the cancer," said lead researcher Dr. Stacy Loeb, assistant professor in the urology department at NYU's cancer center in New York City.

"There is no rush to get treatment -- low risk prostate cancer can be safely monitored," she said. "Some men will eventually need treatment, but others will be able to preserve their quality of life for many years."

In the United States, the majority of men with low risk prostate cancer choose speedy treatment, which can have side effects like urinary and erectile problems, Loeb said.

I can confirm that.

Active surveillance isn't wait-and-see, she explained. It involves regular blood tests and biopsies to gauge growth tumor growth. Should those tumors grow to the point where treatment becomes necessary, then it's time for surgery or radiation.

British Report on Risk of Dying
A recent British trial showed that ten years after men were diagnosed, the risk of dying from prostate cancer was the same whether they initially chose monitoring or opted for surgery or radiation, Loeb said.

October 23, 2016

Updates on My Peripheral Neuropathy and So-Called Orthostatic Hypotension


I was diagnosed with Parkinson's disease (PD) in September 2009, seven years ago. I should've been diagnosed several years earlier, but I’ve never had the tremor -- so characteristic of the disease – that makes early diagnosis easier.

I'm 87 years old, and I’ve probably had PD for 10 or more years. In light of those realities, I'm not doing too badly.

You wouldn't have gotten this upbeat assessment a couple months ago. The attack of shingles in March was a discouraging setback, compounded by Washington's hottest summer in history. Our founding fathers made a lot of brilliant decisions, but building the nation's capital in a swamp wasn’t one of them. With each passing year, I find it increasingly difficult to deal with the summer heat and humidity here. When those numbers go up, my energy goes down. There were even times this past summer when I was barely able to stagger around the house.

It's a different story today. I just took a break from the computer and asked my housemate Nimesh to drive me to the top of the hill on the road leading down to our house. I then got out of the car and took the half-mile walk down to our house… a stroll I take most every day now that the weather has changed.

In my last blog post, I ran a video of me taking this walk. Being able to walk half a mile downhill probably doesn't sound like much of an accomplishment to you. But it is for me.

Treatment of My Peripheral Neuropathy
In September, it occurred to me that my walking difficulties might not simply be a result of my Parkinson’s. I wondered: Might some undiagnosed peripheral neuropathy (PN) be a contributing cause? My neurologist ran some tests, which – sure enough – revealed a moderate to severe case of PN. The accompanying blood work showed a vitamin B12 deficiency, typical for people with PN. My doctor recommended a daily 1000mg dose of vitamin B12. Within a few days, I was feeling ready to take my down-the-hill walk.

It could well be that I’ll see even more improvement in the future. I had forgotten that the blood work also showed a significant surplus of vitamin B6 (my 58.5 ng/m was way above the normal 2.1 to 21.7 ng/m range). So I stopped taking a B-Complex supplement and now hope to see even more improvement.

October 22, 2016

My Blog Holiday

I'm back.

I haven't posted anything for almost three weeks, the longest holiday I've taken since starting this blog seven years ago. I needed the break.

For me, the new year begins in the fall. For 20 years as I moved from childhood to adulthood, the fall was the start of the school year… the center of my life in those days. I guess I haven't really shaken that pattern.

My recent blog-free weeks were like a summer vacation. And where did I go on my summer vacation? To Facebook, to follow the commentaries on this horrible presidential election. Not a happy vacation destination choice.

I could also look at the past few weeks and think that I took sick leave – not vacation time – for about half of every day.

Why? Starting sometime in September, I've been leading a double life.

For the first half of each day, I feel pretty good. Then about mid-afternoon, unwelcome changes set in. My mood darkens, and by bedtime, I often feel seriously depressed.

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.
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