Integrative Medicine

I recently met with Aly Cohen, MD in my initial appointment for one hour, bringing with me pages of questionnaires that I had filled out beforehand. I had also my blood test from this year, my food allergy test from 2010 and the intuitive healer's diet recommendations from the year before. The questionnaires she looked at before she called me into the examining room, and had highlighted certain parts.

one of my colored pencil drawings

Doctor Cohen is young, at least compared to me, and energetic, bright and well informed about environmental and dietary effects on autoimmune diseases. She is also a rheumatologist. She is editing a book with Andrew Weill, the alternative medicine guru, and has a website called The Smart Human and a Facebook page of the same name where she regularly posts tips on healthy living.

http://www.alycohenmd.com/the-smart-human-.html

A lot was crammed into that one hour, questions from her, history from me and then recommendations. She had a Parkinson's Protocol  developed with Dr. Weill that contained supplements for my population. I bought from her ones she had on hand and she gave me also some starter quantities of ones she did not have to sell. A total of 9 supplements, one was a good multi-vitamin, some common vitamins such as E and C and others were more obscure to me such as Ubiquinol and Alpha-lipoic Acid. The dosages are important, many are high dosages.



The tenth supplement was Melatonin for sleep, one important factor in healing that I am not getting enough of. She recommended in this case a very low dosage, 1/2 of one milligram pill.

Other than supplements, she recommends for Parkinson's a diet with lots of vegetables, fruit, meat if desired, nuts, and seeds, that is low in carbs, sugar, dairy, wheat and other gluten foods.

As for the rest, the recommendations for drinking clean water, exercise and emotional health, I am doing what I should. Though I have stress in my life, one of the factors that creates illness, I have some strategies, and plans for more if necessary to help me. I use a Berkey water filter, and am working out 3X/week at the boxing gym (see my last post). The conclusion she made was that I am a healthy woman EXCEPT for the one little glitch - not so little - PD.



PD is a fight I am taking on more in earnest now that it is surfacing above the meds, necessitating more pills and hence the onset of side effects. I have another appointment with Dr. Cohen in 6 weeks. By then I will have introduced each of the supplements and have had 2 months of boxing. There is more I could do, and converting my diet is one of those things.




I will do what I can. I have not been very disciplined in some things. The trick is to find ways to get myself to work on them. Slow work, stubborn habits, weak will. It's not easy. The support of a trusted MD could be the key.

Rock Steady Boxing

making a tough face or trying to

My local Title Boxing gym has started a Rock Steady Boxing program for PDers, and my recently diagnosed neighbor Mary and I signed up. Car pooling together, we have now completed 2 weeks of classes consisting of three 70 minutes classes per week.

We arrive at 1:15 at the latest and put on our wraps, the long, cloth bands that we wrap around our wrists, hands and fingers to protect them. We have a "get to know you" activity with our two other classmates, like throwing a ball and saying something about ourselves. We do warm ups and stretches. Then the real workout begins.

For the next 50 minutes or so we go from one exercise to another. Each day is different, but all parts of our body are challenged to increase endurance, balance, agility, strength and dexterity. We get 1 minute active rests, then 3 minutes of hard exercise. That's typical.

ugly Christmas sweater day

And always at some point we put on our mitts and box. We've learned all the punches: jab, cross, hook, undercut. We punch the heavy bags, the speed bag, the bag for undercuts, and the crazy one on elastic ropes that flies back at you.





We've learned the stance and how to move around the bag. We've punched the oversized mitts that the coaches hold out on their hands and the big belt they wear, like armor, around their torso. Then we end by freestyle punching as hard as we can, then as fast as we can, then hard again. We're encouraged to make noise - yell while we do it.

truly an ugly sweater

We are sweating and exhausted, but after more stretching, and a group cheer, I always feel good, and glad I'm done. We leave by 2: 45. With dressing, travel, shower, it takes up about 2 1/2 hours of my day.



Guiding and pushing us to go beyond our own idea of our limits are our two coaches, Sharon and Andy. They have been trained by the Rock Steady Boxing organization. It was started in the midwest by a man with Parkinson's whose friend introduced him to boxing. He found his symptoms improving after 6 weeks of training. His Rock Steady program is spreading to gyms all around the country. The one here in West Windsor, New Jersey just started their program.




I feel lucky to have this resource near me. It is not what I would have chosen first. If there was a Tai Chi/Qi Gong center near here I might have chosen that, but there isn't anything nearby. It is hard, hard, hard, but there are fun elements (for instance the Christmas sweater day). And I have Mary, a gym buddy to drive with and to keep each other motivated.

My nickname, chosen by me is"Audacious Clay." Just call me "Clay." And keep your mitts up.

Flocks of Birds and Mummified Bodies

I typed this line (spelling errors corrected) into an email late one night about being dropped from a MeetUp list:

That’s fine - remove me from your list. But can I still trust flocks of birds 
and mummified bodies from now

Fortunately it did not get sent. I found it later in my drafts folder. So what does this missive mean?
It means that I keep going, fighting sleep as I push myself to do more, writing emails late at night when I should be in bed.

I sleep a short time each night. Usually 5 hours at the most. Sleeping aids that I've tried do not help. Something in me wants to make the most of my waking hours. So much to do, so much I really want to do.

I woke up this morning around 5:00 and started thinking about a trip to visit my aunt in Florida. She proposed it again in a FaceBook message. From there why not go to Mexico, the Yucatan, or Costa Rica or Peru and Machu Picchu? I have never been to these places and have been longing to see these equatorial lands. The thought made me jump from my bed, but with no meds yet in my system, a shuffling walk took me to the computer to research the possibilities.

"Something in me wants to make the most of my waking hours." My 60th birthday just passed. My desire is to make the most of the remainder of my life. I want to follow the birds, not become a mummified body.

Slightly insane with ukulele friends at my 60th birthday party

Another Season

Change happens, and even little changes nudge my life into new paths. Some things as they say, "fall by the wayside," and other things take their place. My life is not as full as it once was in some ways, but where there are holes, I usually fill them up again.

Before I started taking meds, things were dropping away relentlessly. I couldn't do many things that I used to, or they were too hard, too slow, or too embarrassing to do. The meds have enabled me to take on new things let alone keeping what I already had in my life before the PD. I am grateful for that. 

My side effects are minimal. Sometimes my legs are bouncing or I sway back and forth rhythmically, but its not debilitating or constant. 

So when I started this blog with the optimistically drug-free title, I was opposed to taking meds. The fear of the side effects and distrust of the acrimonious drug companies and medical drug peddlers were strong factors in my postponement of taking my prescription. I still have those feelings, but I accept the drugs as an obvious boon. That doesn't mean they work for everyone. I was lucky - they worked very well for me.

In a few days I will be turning 60. The questions for me now are: 

HOW LONG CAN I KEEP TAKING MEDS AND LIVE A FULL LIFE WITHOUT SIDE EFFECTS?

WILL I EVER DECIDE TO EMBRACE A "RADICAL" TREATMENT APPROACH TO TRY TO ACTUALLY RECOVER FROM PD?

WILL THERE BE A MEDICAL OR ALTERNATIVE AND ACCESSIBLE MEDICAL CURE FOR PD IN MY LIFETIME?

These three questions lead to a lot more questions. Questions are good, I should ask more. And it would behoove me to do more research in the area of PD, but I have not. I blithely pass my days in activities many of which, I believe, are helpful to my condition, and some maybe not, but thanks to the drugs, I forget at times that I even have an illness. That is wonderful - to forget - and just LIVE.

The Delaware River from Goat Hill in Lambertville NJ
(also the photo above is from the same hilltop)

Run Through the Sun

I have started a running program. With advice from a very engaging online guide to running put out by the NYTimes, I began "to run" in earnest.

I didn't run so much as jog and I didn't even do that the whole time. At first I used a timer: run 1 minute, walk 2 minutes, run one minute and so forth, to complete the first distance of one mile. Every week I added 1/2 mile to my course, making a loop from my house and going through different neighborhoods as the distances increased.

Recently I have begun working without the timer, instead running to goals I see ahead and walking less. I am going almost 4 miles now, but still walking part of the time.

The advice from the NYT was to immediately sign up for a 5K race, so you have a goal to strive for. I had a race picked out, but I didn't follow up. I am still going out though, and maybe, when I don't walk anymore (if that ever happens), I will try a race.

at an inn at the Jersey shore

It is NOT easy.

Before I go out I have learned to:

• wait until my meds kick in
• to stretch my toes, ankles, and feet especially
• to drink water and eat a fist-sized amount of food
• wear cushy running shoes, and sun protection
• pack my phone and reading glasses

I allow myself to sit down and stretch my feet if they are bothering me. Though once I suffered through with throbbing toes, it made me dread going the next time. I need to make it NOT be torture or I could end it all. The best running was barefoot along the water line at the shore. My feet did not bother me at all - no! They were happy feet.

Now to see, is it helping me? I believe it is strengthening my body, definitely but is it effecting the PD? My suspicion is affirmative. My task to really find out is to continue to push myself, to run longer and farther. Can I do that? I am not known for sticking with my plans. Send me some fortitude, Oh Universe!

The NYT Guide to Running

Focus on PD

the studio in winter

Since the new year I have banished myself from the clay studio, though reluctantly, to get myself on a healthy path and to halt this increase in medication. Instead of taking the extra 2 doses Dr. V said I could take of Carbidopa Levadopa, I am exercising, drumming, or dancing. If I have to be on the ball I might take the meds a little early, but I do NOT want more medication, if anything less, better yet - none.

my new bongo drums

I am hopeful and results are promising. I am proceeding at my own pace, trying to intensify the program I have devised so far, and continue to seek methods for recovery.

I have joined Dr. Rogers' Parkinson's Recovery support group which has now met once online and the phone line and have much I could be studying with the radio interviews and lectures he has available. More to be done with that, but I am these days a woman of action, not prone to reading, but always want to "get started already!" Impatient.

My current activities are spinning on the stationary bike, a little hula dancing to loosen the hips, and drumming to get the benefits of the vibrations and regular rhythms to transform my brain's garbled patterns. Where do I get these ideas? I am feeling my way, letting intuition and heart guide me. And if I notice a benefit, then I continue. All three things are helping, I can tell, even if only for short spells.

Here is what I'm doing no, for PD or just for the hell of it:

45 min/day on bike
latin dance class
yoga class
personal trainer exercises
learning violin, two lessons so far
learning to play bongo and timbau drums
playing and learning ukulele and singing with the "Woe Nellies" ukulele band weekly
singing with the Jersey Harmony Chorus once/week
dancing hula-ish movements to Hawaiian music (I learned the Hukilau dance) daily
diet: fresh juice or smoothie a.m., soup or salad lunch, limited wheat, dairy, sugar, snacking, alcohol
        (the last 5 I tried to eliminate, but I haven't been able to totally - some days, yes)

There is sabotage with projects around the house trying to lure me from my way, but the focus must remain. It should, it MUST be my first priority.

The Woe Nellies