Month: November 2019

Sunday (Yesterday)

Weather crisp and clear, after my morning hike, a brief nap, and lunch, I put a couple of hours into the garden. The lavender needed cutting back, lots of sweeping, a little weeding, the start of putting stuff away for winter. Then I went shopping, hung laundry, and answered email. It wasn’t always easy to keep going, but I did. I’m not sure I could have at the beginning of October.

But it’s not that cut and dry. What follows should not be misconstrued as advice or anything but a report.  I also do not mean to detract from what continues to feel like a slow but steady overall improvement.  But these details may be helpful to some.

First, some background.

May & June

My doctor recommended Madopar (levodopa + benserazide) after trying a couple of other non-levodopa medications that disagreed with me. I was in the middle of rehearsals for Colloquia, and didn’t want to risk further side-effects, so delayed taking it until after the show opened. I jumped the gun a bit, and took my first, very small, dose on the morning of opening. Within an hour I felt as if I’d been binge-drinking the night before. When I rose for an unanticipated curtain call that evening, I was reeling. Several of my less-than-shy friends (none of them are at all shy, come to think of it) told me later that I looked drunk.

Drunkenness never really went away so long as I took the drug, and any reduction of symptoms was subtle. Medical professionals suggested that I should be taking increasingly higher doses. When I tried, symptoms seemed to worsen and the drunkenness became embarrassing.

July

Early in the month, I began homeopathic and bioenergetic treatments with Dr. Fritz. I was still drunk, (though had grown a bit used to it) so it was suggested I take a break from the Madopar. I asked my doctor, he agreed.

August & September

Over the next several weeks I began to feel better. But so much of what I read indicated that levodopa is an essential element of treatment, so I continued research. I was eventually led to a natural source of levodopa, Mucuna Pruriens, a tropical bean that’s loaded with the stuff. I found the concentrated powder that was recommended, passed printed copies of the most concise, readable, and peer-reviewed material I could find on the subject to my doctor, and began taking it at a very low dose about a week before I saw him so that I would have some experiential data to give him at our appointment.

For the first three or four days, Mucuna seemed to be having a good effect, but symptoms had been reducing for several weeks at that point, so it wasn’t easy to know for sure. By the time I saw my doctor, I was no longer absolutely certain as to its efficacy, but he agreed that it was worth a try.

October

I went to Bratislava. You’ve heard more about those two weeks than you ever wanted to, so suffice to say I continued taking Mucuna. However, because I traveled with an unopened package of a different brand, I may have been taking a different dose. Both powders were shown as 20:1 concentrations, but neither showed a percentage of levodopa by volume, so it was impossible to know how they compared.

November

First few days back home, I’d time doses of Mucuna to fall an hour or so before dinner or tea or whatever with friends; I wanted to feel my best. Ironically, I’d feel fine taking the dose, but by the time we were seated for dinner or tea or whatever, I would be trembling and stooped and robotic. I began to wonder if there was a correlation.

Last Friday

I decided to skip doses during the day, take a larger one at evening (at the suggestion of a medical friend), and see if that made a difference. It did; I was so beset by trembling and general discomfort, that I couldn’t sleep for hours.

Saturday

I started a break from Mucuna. For two days, the tremor was less frequent and less severe, my gait resolved itself almost immediately upon setting out for a walk, I was not entertained by the Goofies or the Slows, and my gestures didn’t feel as ridiculous.

Sunday Again

By evening I felt a bit “in orbit” while walking, that is, a sense of leaning forward as the earth moves away.

Monday (Today)

Being in orbit intensified, and began to feel dangerous. I re-read the paper on Mucuna. It mentions the difficulty in finding an optimum dose. It also mentions green tea as way of boosting the effect at low doses. Just before lunch I took a very small dose with green tea (probably about 75 mg). I went to visit Maria and was treated to her giving a lesson on the loom to a young customer.  Even so, I took another dose at about four. By eight I was feeling loose and walking well. I’ve felt lighter all day, agility has returned, and the right arm tremor and tightness have been slight. I plan to make the 8 pm dose the final one until morning so as not to risk my sleep.

Conclusion

No conclusions. Just for the record.

I’ve been told that medicating PD is a process of fine tuning. I’m still looking for the knob that switches between the CD player and the radio.

To be continued.

There is an expression in English I used to hear quite often – though not hearing it lately may merely be a factor of being away from my language base – “slowly but surely”. That’s my health report for the week; slowly but surely. The phrase is probably the closest we have in English to the Italian piano piano, which is used to counsel patience in any and all situations. To a native Californian whose supposed love of process is often feigned, both phrases qualify as statements of high philosophy.

When I first moved here, random waiting would make me silently crazy. Buy trousers at the market, they invariably need hemming. Text my tailor, make an appointment for day after tomorrow. Her kids have a special school program she just found out about, so two days after that? Measurements taken, pins inserted, they’ll be ready day after tomorrow. I forgot my dental appointment for day after tomorrow. No problem, come in the afternoon. Wait! my mother needs something, can you come after 16:00? Nope, I’m scheduled for a haircut. No problem, day after tomorrow. A week after my purchase I pick up my new trousers, the perfect length and only five euro for the alteration; what she had to cut off is included in the sack, “just in case”. I only had to wait.

I’ve long disdained the culture of instant gratification, but have here discovered that I am deeply imbued with its expectation.

People ask, how’s my health. I can honestly answer that I feel a little better every day. I can also honestly report that symptoms are reduced, across the board, by a tiny bit. And with total accuracy can say that I still feel goofy at various unpredictable times and levels. And that the question about my health confuses me if I think about it too much.

I also daily witness my impatience. I bought a treatment, and I want it to work, now. I can’t wear new pants with the hems half rolled or the extra fabric not removed, or with cuffs held in place by basting stitches, so why should I put up with partially gone symptoms?

Because life is not a pair of pants. And because I looked at my garden today, and was eager for the weather to improve so I could do some major cleanup, an eagerness that was not even theoretical before my journey to Bratislava. Eagerness is way better than lassitude.

When, while still in bed, I stretch after waking (one of the most gratifying actions of the day) for the past however many months, arms and legs would tremble. About a week ago, they stopped doing that. I’d forgotten what a pure stretch was like, and let me say it is even more delicious than a trembling one. Getting out of bed – and up from chairs and sofas – also became easier about two weeks ago, and slowly but surely that improvement continues. Now, I often don’t need to use my arms at all to get an initial lift. My voice is clear better than half the time. The right arm tremor goes away for hours at a stretch, not just sort of, but completely.

On that last subject, a process. This morning I finally returned to my meditation practice. It’s not that I didn’t try in Bratislava, but until the day before I left, I tended towards such fatigue that sitting to meditate inevitably led to a long nap. This morning, it led to meditation. At that point my arm was still quiet and relaxed a good hour after waking, unusual but not unheard of. As I glided down, the arm would occasionally express a desire to grow tense, but a bit of breath and mantra support guided it away from that wish; and I saw what a fine line there is between habit and symptom. The arm remained relaxed until after my Listening to Music class (which I was able to attend for the first time since March) and regained nearly full composure during a short nap awhile later.

In worldly life, I actually did buy new trousers and they will be ready November 9 – a week after purchase. Somewhere they are in process.

Piano piano.

I only have to wait.