June 30, 2014

June 2014 Report: My Aging and Parkinson's

This is the first in an ongoing series of monthly health updates. Since this report will establish the baseline, it will be longer than I'd like.

I'm CEO of my own health, so I want to have accurate data on what's happened in the past. That's a challenge, since my memory has faded.

For several years, I’ve kept daily records of pill intake and blood pressure. Now, I"ve expanded the daily record to include other relevant information.

At the end of the month, I'll review those daily logs and share my observations. Here’s the pilot run:

June, 2014

I turned 85 in May. I was diagnosed with Parkinson’s disease five years ago. I’ve had prostate cancer for 20 years.

To my surprise, the headline for the past month is -- I’m feeling better than I have in months, maybe years.

The positives
Regular checkup with my neurologist.  I had a regular checkup with my neurologist in mid-June. When we're together, he observes my movement and coordination. Sometimes he watches me walk up and down the hall. This time, he watched me get up, unassisted, from the chair. He also administered some standard tests of muscle strength, control and reflexes. He observed NO changes since my last visit.

Discontinuing my blood pressure pills.  Recently, I’ve seen reports suggesting that people over 80 don't really need blood pressure meds IF they've not shown any risk of heart attack or stroke. Two months ago, I saw a blood pressure specialist who confirmed that observation. He said “I won’t lose any sleep if you decide to discontinue your blood pressure pills.” So I did.

I check my bp four or five times a day to be sure that my 5-HTP (see below) isn't causing spikes in the blood pressure. . The numbers over the past month show no cause for concern about junking the blood pressure pills. Hooray. I never took a blood pressure pill that didn't have an undesirable side effect. .

Thanks to 5-HTP, I continue to be free of the non-motor side effects of Parkinson’s.  Before my PD diagnosis, I used the serotonin-booster 5-HTP to treat bouts of insomnia. I discovered it also helped with mood and bowel function. Insomnia, depression, and constipation are common side effects of Parkinson’s. With my neurologist’s approval, I resumed taking 5-HTP after my diagnosis, and it continues to work.

I didn't know until recently that Parkinson’s damages the part of the brain responsible for executive function -- what we use to perform activities like planning, organizing, strategizing, remembering details, managing time and space. A special bonus from 5-HTP: I feel like my own executive function has been enhanced, not compromised.

For me, 5-HTP seems custom-designed to deal with the non-motor side effects of Parkinson’s.

A new pill -- ashwaganda -- seems to be making a big difference.  In my research on curcumin and coconut oil, I came across an interesting interview with Dr. Ray Tanzi, a Harvard neurologist and arguably the top Alzheimer’s expert. The interviewer asked Tanzi if he does anything to reduce his own Alzheimer's risk. Tanzi said he thought being a vegetarian helps... as does being socially and intellectually engaged. Then he said he didn’t take any supplements, except ashwaganda.

Intrigued, I looked up ashwaganda and discovered it’s an anti-amyloid related to ginseng. Diseases associated with amyloids include Alzheimer’s, diabetes, and Parkinson’s. Ashwaganda is also used to improve thinking and prevent the effects of aging.

Given that report -- and the endorsement of a top neurologist -- I decided to give ashwaganda a try. Dr. Tanzi cautioned against buying ashwaganda online, since many products are deficient. He uses ashwaganda produced by Douglas Labs and warned against taking other online versions.He said the Douglas Lab product required a doctor's prescription. But now it's available without a prescription, and I’ve been taking it for a couple weeks. I suspect it may be one of the reasons I’m feeling better.

Curcumin – – the wild card.  Curcumin is the only other supplement I take. It’s the active ingredient in turmeric, called “the spice of life” in India. It has been examined and tested more than any other supplement. In studies involving mice and petri dishes, it has been found to slow the progression of Alzheimer’s, Parkinson’s, diabetes, cancer, and other diseases.

By itself, curcumin has a hard time crossing the blood/brain barrier. But enhanced versions now available do a better job getting into our systems. Only an autopsy will reveal for certain if it has helped me. But my Parkinson’s seems to be progressing relatively slowly.

Changes in my levadopa dosage.  Levadopa is the gold standard med for Parkinson’s, but managing the dosage is difficult. Taking high doses for a long time can result in dyskinesia, the uncontrolled thrashing about exhibited by Michael J. Fox and others. Too little, and the levadopa loses its ability to control Parkinson’s symptoms.

Like most everyone with PD, I struggle to find the right combination of pills each day. I also believe I'll benefit if I can strike the right balance between intake of levadopa (which restores the dopamine that PD destroys) and intake of 5-HTP, which boosts the level of serotonin.

I asked my neurologist to prescribe the extended release form of levadopa, which carries double the dose of the regular pill. I’m also experimenting with different combinations of the regular and extended release pills. The most recent combination has resulted in only a few “off” hours -- when the pill loses its effectiveness. Not perfection, but progress.

BTW, I've discovered an easy way to check on whether I'm having an "on" period when the levodopa is working or an "off" spell when it isn't -- I check my handwriting. Free flowing writing is "on." Small. cramped, barely legible writing is "off," 

My version of mindful meditation is key to my well-being.  My middle-of-the-night quiet hour is now sacred to me. I enjoy it so much I often have to force myself to go back to bed. Part of the time, I do my back exercises and light tai chi-like stretches. My enhanced executive function resolves other issues.

Blogging and gardening:  I wrote recently about a study showing that having a purpose in life -- a commitment to broader goals -- is “a very robust predictor of health and well-being in old age.” Blogging and gardening serve that function for me, though they get tougher each year. I’ve made adjustments to keep me involved with both these passions: My editor and colleague, Stanley, is taking on more of the blog work. I’ve also hired a gardener to handle the heavier chores in the garden.

What's going to be a big help with the blog is the Dragonfly voice-recognition software I've just installed. This post was written largely by talking to the computer rather then using the keyboard where I've been averaging three or more typos per line. 

The garden looks great. The blog averages over 500 hits a day. All’s well on both fronts.

But Problems Remain
Most of all, I fear falling -- an accident that could hasten my demise or bring serious disability. And balance issues -- not the typical tremors -- are my biggest PD-related problem.

I’ve fallen before because I wasn't paying proper attention -- stumbling on a crack in the sidewalk, for instance. But in the past few months, I’ve had several falls clearly attributable to the Parkinsonian loss of balance. Each of those falls happened because I turned too quickly.

My risk of falling has been compounded by orthostatic hypotension (OH), a sudden drop in blood pressure. Dizziness typically occurs, heightening the risk of falling. It's a common problem for people with PD. Usually OH happens when you rise from a chair. I’ve not had that particular issue.

Mine is more peculiar. It occurs if I’m outside at midday on hot days, especially if I’m walking, gardening, or exerting myself in any way. I experienced OT just last week when I spent a half hour putting some small plants in the soil. I couldn’t get up on my own. I had to crawl to the  nearest tree, pull myself up, and hang on to something for support each step of my way back to the house. 

When I check my blood pressure after incidents like this, the systolic reading is very low, often below 100. With rest and lots of water, the number returns to normal. 

I’ve talked to several doctors about this problem. They recommend drinking several glasses of water before going out, carrying salted pretzels to munch on if I sense an episode coming on, and wearing a corset-like binding that elevates blood pressure. I’ll try the first two. Not sure about the third.

Most every day I do at least two of the BIG exercises developed for people with PD. I’m scheduled for a series of sessions with my physical therapist on using my trekking poles, which she likes more than the cane.

But I need to do more. My neurologist thinks the best balance exercise is the old standard -- standing on one foot for ten seconds, then switching to the other foot. I’m starting to do this exercise, keeping a finger on the handle of my exercise cycle for balance. Finally, that cycle is getting some use. 

1 comment:

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