The Meds

I may seem scornful of medication in these posts, but actually I am very grateful. Perhaps with a stronger will I could override the need for them, but for now, they're a blessing. After I was diagnosed, I went as long as I could without them, and now I am dependent.





I know that now because I tried to eliminate one - pramipexole, the generic for Mirapex. It was the first medication prescribed for me and it worked miracles, but it didn't last. Its efficacy lasted a year before carbidopa levodopa had to be added to keep me at the same level of functionality. So now after 7 years of pramipexole, I wondered, what could its efficacy be, was it still enhancing the CL as Dr. V said it would, or was it just a chemical drifting unnecessarily through my bloodstream?

My new neurologist, Dr. F went along with that when I suggested I was overmedicated. I said I would like to reduce my meds because I didn't like the diskinesia I was experiencing as a side effect. Though she said that the CL was usually the cause of the dyskinesia, she said I could try eliminating one pramipexole to see what happened, and if that seemed to make no difference, to eliminate another. As I recall that was the entire conversation about eliminating paramexipole.





I was on a 3 per day dosage of the drug. Over about a week and a half (but I wasn't keeping records so I'm not sure) I eliminated one pill at a time. I had to adjust a little, but after a few days with the elimination of one paramexipole I thought I was doing well enough to eliminate another. And then I had none.

Before too long, things went downhill. My "off" periods became more frequent, longer and more intense. I felt my body contract and shut down. I thought I would adjust, but it got worse.





On an evening walk with my husband on the second day without paramexipole, my mood became gloomy. I talked about all the things that were negative about my family, all my worries, fears and from there moved on to other dark subjects: the woman that was killed at the intersection on Nassau Street for instance. We sat  on a bench in a pretty spot on the University campus and I leaned my head on my husband's shoulder. While gazing at the moon, tears came to my eyes and rolled down my cheeks. What was strange to me was that I could not get out of this depressed mood. This was uncharacteristic of of me - I am usually a positive person.



Back at home I tried working in the studio, and though I was dressed lightly on this cool October night, I began to sweat profusely, sweat dripping off my nose. I am past menopause, hot flashes no longer plague me, so what was going on? A little light glimmered in my mind. Could it be withdrawal?

Ahhh, at last I understood. When I went to the internet and searched I found that withdrawal from pramipexole, if done too quickly, induces a withdrawal comparable to that of cocaine withdrawal: depression, anxiety, sweating, headache, nausea. I went to take a pill hoping it would give me some quick relief, but over the next 24 hours I was to experience the other symptoms as well. Very tired, I slept on and off in the reclining chair all the next day, just waiting to feel better.



I spent the following days experimenting with dosages, dividing pills of the paramexipole in halves and in quarters, trying to find the best course with that drug and also with the carbidopa levodopa. I kept a log and now have worked out what I think is the best schedule of medications for me. I take a total of 2 pramipexole a day and CL every three hours until dinner, then I don't take more unless I am going out or have plans that night.



The meds work for me. They work so I can work. After finding the right drug regimen, I was able to spend an entire day with no "off" periods selling my pottery at a craft fair. The only problem now is that I had a fall and injured my ribs (broken, fractured, bruised, I don't know) and that is holding me back. Ribs take a while to heal. Falls are another Parkinson's weakness.

Drugs drugs drugs. Who knew  I
would take to them so thoroughly that I'm writing all about them in this blog. They help me live the life I want, and for that I am most grateful,

Five Things to Learn

An email from a student who attended a qigong school in Hainan province in China shared a video with me. She responded to my inquiry about her time at the school. She as well as another former student have written warm and encouraging words that have made me consider this long journey in search of healing as something worth doing.

The video is about Anita Moorjani's near death experience and what she learned. She healed from late stage cancer in five weeks after her NDE. What she learned is worth sharing, and her story an amazing one.

Anita Moorjani's TED Talk

Parkinson's is NOT Incurable

People have recovered, yet the medical community still keeps repeating this diagnosis. "You have Parkinson's Disease, there is no cure, you will grow progressively worse and eventually die a miserable death." Thanks, but I don't accept that. Why? Because of people like Bianca Molle.

https://www.youtube.com/watch?v=0SCyxlgLqmE&t=82s

And there are others who have found their own path to recovery. I may too, or I hope to. Like Bianca I am doing qigong, and though I have just begun to make it a regular practice, I already feel hopeful.

I attended the National Qigong Association 22nd Annual Conference this past weekend and took two workshops. Afterwards I went to a concert and stayed out late, dancing much of the time, and feeling good, with no symptoms. I had taken an extra carbidopa levidopa, but still, I usually conk out before 12:00 a.m. which was when I got home. I was still energized.

The Tie Dye Hillbilllies

I have taken a few classes in qigong, and exercise along with DVDs occasionally with my friend Wilma. So I was interested when she shared the information with me about a qigong conference in Newark.

I took the train, and walked from the station to the hotel where it was taking place. I attended a two hour morning workshop called "Qi Meets Prana," with Francesco Garripoli and his lovely partner, Ambikha Devi. She lead us in standing yoga breathing and asanas, while Francesco guided us through more breathing and qigong exercises.












In the afternoon Joyce Virani lead a "Female Essence Qigong" workshop. She has had, and maybe still does have a modeling career, but is now "passionate about healing women and teaching them to care for themselves." She brought a lot of that passion on Saturday, as we let ourselves open and express ourselves with scents, self massage, movement and sound.














At the center of the room was a display of stones, cards, candles and other objects that we women sat around in a circle. I sat in front of the word, "gentle," simply at random. Joyce said however, that the word in front of us was NOT a coincidence.







These were workshops to bring you in touch with your body, mind and emotions, and perhaps a spiritual feeling, too. Talking with other students and teachers of qigong at lunch was stimulating, and they were awfully nice. Bianca Molle was there leading a workshop, and I saw that she is doing well, and now maybe I too am ready to try what she did. I am starting on the path.

It isn't an easy one - it will take a lot of my time. I'm starting slow. Practice three times a day is my intention, using YouTube and DVD's. I will also look for a teacher or a class. I'm ready.

My First Unity Walk

The Parkinson's Unity Walk in Central Park, New York City was a new experience. I walked with some of my Rock Steady class and another group from Central New Jersey. We also demonstrated our moves doing a plank exercise and punching mitts. It was worth going to support our coaches and my classmates. I am not really an activist sort, but I did raise some money for PD research through my Facebook page.

Meanwhile, I keep going 3 times a week to box and taking lots of supplements, eating healthy food (if too much sometimes) and doing things I love. That's a good mix, but I'm feeling, not enough. I'm still searching for the right combination to beat this disease - for good.

Oh Lordy, Deep Tissue Massage

I found a massage therapist, and she has hands that know the plan of the muscles and tendons.
She is able to find the tight little creations my body makes called knots and prod them to release. But the prodding can be painful. Wachena has strong fingers and uses her fingertips, her knuckles and even her elbow to dig deeply into by flesh.






I take this lying down, but by no means silently. She tells me, "Take a deep breath," and I know there is something powerful on the way. I breath audibly, but still cannot bear the pain in silence. I moan, I groan, I whimper, and still she goes on. For nearly 45 minutes I am kneaded and pressed on the legs, shoulders, arms, hands and neck, wishing it was over already.

Yet, it goes on, occasionally Wachena gently slathers on oil or gives a subtle squeeze to my neck, but generally I work hard at trying to keep relaxed while she makes deep explorations into my flesh. My tender thumb and wrist, and my painful left hip that ended my running regime have all improved since my visits to Wachena. I thank her for that, but I may not be willing to go on much longer. I may just try to manage with the back massager I got for Christmas.