Author (#1)April 2008 Archives

Jane Brody's column this week pretty much nails it: No matter if you've got Parkinson's, cancer, or are simply getting older, exercise is going to help you. 

"The single thing that comes close to a magic bullet, in terms of its strong and universal benefits, is exercise," Frank Hu, epidemiologist at the Harvard School of Public Health, said in the Harvard Magazine.

Study after study shows that moderate to vigorous exercise will help you. Haven't been off the couch in a while? Get started, under the supervision of a personal trainer or physical therapist. Heart problems? Get busy -- that's the best way to pump oxygenated blood to where it's needed. Depression? Exercise is arguably better than any drug, and it's drug-free.

Please, read the article. It could save you life -- and it will certainly improve the quality of it.

The simple act of receiving the diagnosis of Parkinson's disease blew me out of the water. I've met quite a few people in support groups for whom the diagnosis was a singularly traumatic event.

I suppose this news is worth chewing on while managing those low-protein diets. Is it possible to eat anything at all and not be consigned to eternal hellfire and damnation?

I am so tired.

Knowing that sleep problems are a part of having Parkinson's disease doesn't make having a problem any more tolerable. It could be worse: I could be getting no relief at all.

I sleep with a C-PAP, basically a compressor that shoots air under pressure through my nose and into my lungs. The system keeps my upper airways from collapsing at the instant an exhale turns to inhale.

Without it, I would suffer an average of 67 "waking incidents" per hour, all night long, every night. The day after my first night in a sleep lab was bliss, and it only got better as the months went by. My long twilight of ill temper and dulled thought receded into long-term memory.

Every so often, the new routine is disrupted. Maybe it's the congestion from low-level, seasonal allergies. It could be the new headgear, which gets replaced every few months (the tubing develops pinholes in regular use).

Whatever. The last few days have been tough. I'm slowly gaining more uninterrupted hours each night, but the cumulative effect has been increasingly apparent. Here's hoping for a good night.

From Drugs.com:

[Posted 04/09/2008] Schwarz Pharma informed healthcare professionals and patients of the recall of Neupro, a transdermal delivery system worn on the skin and used to treat early stage Parkinson's disease, at the end of April 2008, because of the formation of rotigotine crystals in the patches. When the drug crystallizes, less drug is available to be absorbed through the skin and the efficacy of the product may vary. Healthcare professionals should not initiate any new patients on Neupro and should begin to down-titrate all patients currently using the product per the guidelines in the product labeling. Patients should NOT abruptly discontinue therapy. Abrupt withdrawal of dopamine agonists has been associated with a syndrome resembling neuroleptic malignant syndrome or akinetic crises.

It's long been said that exercise is vital to helping people with Parkinson's. One bit of scientific evidence is a study published last fall that studied the effects on Parkinsonians of walking on a treadmill.

The objective: to see if gait and instability could be helped by walking regularly on a treadmill. After all, falling -- or the fear of falling -- can dramatically affect a patient's quality of life. 

Treadmill training has long been used to help rehabilitate people after strokes and spinal cord injuries, in part because it's easier to build up strength if one can use the treadmill's rails for support.

The study involved nine patients walking on a motorized treadmill four times a week, 30 minutes at a time, for six weeks, under the close supervision of a physical therapist. The speed of the treadmill was reevaluated each week; patients started out at a relatively slow speed that was gradually boosted.

The benefits were significant, both in the short and long term. Mobility improved by the end of the six-week period, and the patients were all enthusiastic about continuing an exercise program. 

Several weeks after the study ended, patients were interviewed again. Not only were gait and mobility better than before the test, but their Parkinson's rating scores were lower (better). Basically, everyone felt better, more confident, less likely to fall. Something about the rhythm, perhaps -- which is echoed in the findings of other studies of the benefits of dancing and tai chi for Parkinsonians.

Bottom line: any exercise performed with rhythm and vigor is gonna help you feel better.

The Valley News (Lebanon, NH) had a nice article regarding yesterday's symposium. Thanks! (For the record, I was age 34 at time of onset, in February 1998. Seems like a hundred years ago.)

There's no better way of celebrating good fortune than to share it with others. So for those of us who helped create The Parkinson's Center at Dartmouth-Hitchcock Medical Center, yesterday's symposium was pure joy.

More than 200 people from all corners of New Hampshire and beyond jammed two conference rooms at DHMC for lectures and panel discussions on cutting-edge research and treatment of Parkinson's disease.

The event was a coming-out party of sorts for The Parkinson's Center, a fully-fledged Information and Referral Center underwritten by a multi-year grant from the American Parkinson Disease Association.

The APDA sponsored I&R Centers in every New England state except New Hampshire until 2006, when a grant request from DHMC neurologists Steven Lee and David Coffey was officially approved. 

I'll take credit only for introducing the doctors at DHMC to the APDA program, as a way to bring desperately needed resources to the motion-disorder specialists. 

I remember well an office visit with Dr. Coffey and his pinging computer. The noise was the steady drip of incoming messages. He had cleared the in-box before our appointment; by the end of our hour, he had received more than 30 messages -- refill requests, call-backs from patients, notes from students and colleagues. 

The APDA grant covers roughly 50 percent of the cost of a full-time professional, such as a registered nurse or social worker. The coordinator works from an office in the neurology section, providing information and referrals to patients, caregivers, and allied health professionals.

Part of the center's outreach effort is aimed at creating and sustaining local support groups. As the network of local groups expands, members of those groups eventually create an APDA-affiliated state chapter. The chapter then organizes fund-raisers to benefit APDA programs, such as the network of centers and a full spectrum of scientific research.

At the center level, the grant doesn't provide direct clinical relief to busy doctors. It provides complimentary relief, by creating communities that help its members learn how to cope in the long intervals between doctor visits. 

A doctor can adjust medication; he can't tell you where to buy that spikey thing that provides better traction for your cane while walking across ice. A doctor can write a letter for your disability claim; she can't tell you how to buttress your case if your claim is denied in the first round.

That's why yesterday's event was such a thrill. It was truly exciting to be present at the launch of this hope-filled enterprise, listening to an easily-comprehended discussion of surgical methods and a comprehensive survey of the latest research, in the company of a couple of hundred of fellow travelers. 

An upcoming paper adds to concerns that anticholinergic drugs can affect cognition in older people. Anticholinergic drugs are often used to treat Parkinson's, as well as other problems in older people, like incontinence.

I'd heard about the value of a low-protein diet for many years, and always thought it was over-hyped. Because levodopa is an amino acid, the thinking is that too much protein in the gut would lessen the amount of levodopa taken up by the brain.

I ignored that thinking for the roughly four years I've been taking generic Sinemet (carbidopa/levedopa). I exercise heavily, five or six times a week, and paid no heed to protein consumption. If anything, I sought more of it in my diet, thinking it essential to recovery from those workouts.

But my thinking has completely changed during the past six months. Protein matters. The logic slowly crept up on me, as I struggled with managing my symptoms. 

I take a total of seven tabs of generic 25/100 six times a day. I realized that, from time of ingestion to time of wear off, was only two hours. A dose might take from 30 to 90 minutes to kick in, meaning I would get maybe an hour of relief from each tab. That meant I was getting relief for maybe half of my waking hours -- and no relief from the tremors for the other half.

I was observing the standard rule of taking levodopa on an empty stomach: wait at least an hour after eating, then wait another half hour before eating. On a two-hour dosing regime, that meant spending a lot of conscious energy on the eating and dosing schedule.

I started supplementing with a protein shake (whey/casein) at bedtime, thinking that would be a good way to assure sufficient protein intake. But by this time, I was finding that more of my doses of levodopa were failing to provide any relief at all. Maybe I couldn't wait the half-hour until eating. Maybe my meals were too large. 

But the moment of truth arrived in March, when I failed to get any relief at all from my first dose of the morning. This was a crisis: I live for the structure of my days, and the morning carpool to the kids' school is the key event. Usually, that morning dose kicked in within a half-hour -- the fastest of the day. Now I was getting no relief.

An offhand comment from one of my neurologists had primed me for an epiphany. I described a lunch (tomato soup, black bean soup) that I thought was ultra-healthy, but he pointed out that the beans may have had enough protein to screw up the subsequent dose. Hmm.

Then I got to thinking about that late-night shake (sooo yummy). I skipped the shake one night, and the morning medicine uptake was back to normal. Next night, I skipped the shake. Next morning, everything was fine. Within another day or two, I got serious about tracking my diet, my medicine intake, and my response to the meds. 

The results were immediately apparent, and shocking. I'll elaborate in another post.

Over these past 10 years that I've managed Parkinson's disease, friends have often suggested that I write about what I've learned. From diet and exercise to medication side effects, keeping pace with two young children, and minimizing the footprints I leave upon my spouse, friends, and colleagues, there's no shortage of material. I only hope that I can keep up, and keep it relevant and useful.