Improvements

 

I have been active. I have been energetic. I have returned to being - almost - the person I was before Parkinson’s. My tango and biking skills have improved, and best of all I can walk. I don’t have to take the power chair to get to the bank or the library. I can walk. I can take Molly for a walk on the leash, or stroll with my husband. I won’t write about what symptoms remain.

            The physical improvements have excited me to take on projects – clay being one of them. I’ve found myself working sometimes all day in the studio. I signed up for a clay class to get some expert advice in all aspects of building, glazing and firing. There’s just too much to learn by myself, and I am definitely in need of teaching.

            Another project is some renovation – a kitchen remodel. It is in the beginning stages and quite consuming of my brain. I am very involved with all the details. I hope my contractor can stand me.

It is very typical of the Parkinson’s personality to get obsessed with a project or two or three. I think though that I have learned a little during my contemplative times recently to be more balanced, less adrenalin-driven, more relaxed. My husband and son commented yesterday about what kind of mother and wife I am. They said I was “nice.” This may not be the most effusively complimentary thing to say, but for me it seemed big because I don’t think they would have said that a few years ago. So perhaps I am learning something. Perhaps I am learning to change.

Summertime

This summer has been hot with lots of sun. My routine has changed in accordance with the season, for multiple reasons. My teacher husband is home, and my high school son (part of the time). I have a garden that calls out for early morning care. I have returned to working in the clay studio. And I am taking a drug that enables me to take on activities that were previously untenable due to Parkinson’s.

            So my prayer, meditation and Qi Gong have slipped by the wayside being replaced by shifting daily activities. Only occasionally do I fit them in. As far as “energy work” I have continued in practicing Reiki. I used my studio table to do Reiki eight times with four different people. I also participated twice in an “energy share” with other Reiki and energy workers. During a share you practice on another person and they in turn practice on you, sharing experience and knowledge with each other. In the last share, Larry was my partner. He uses crystals and other stones in his work. Very interesting.

            I had a suspicion I might drop away from some of my healing exercises when I started taking a drug. Instead I am doing things I love. Could that be healing, too? My husband and I took our bikes on the ferry to Block Island and stayed for a few nights - riding, hiking, and swimming. We hadn’t planned this trip. It became possible though with the Mirapex.

            If I continued my routine would I have seen improvement? Would I have healed, become symptom-free if I’d only stuck with it longer? I still intend to change. I have begun a serious examination of my inner workings and my relationship with God that is not ended. There may well come a time when the drug is no longer necessary.

Happy

 

After one month of Mirapex I visited my neurologist, Dr. V. Thankfully, he made little comment about my delay of 8 months between his writing a prescription and my taking the medication. I resisted taking medication longer than that, and now I feel rather guilty at times for giving in. Yet, I am happier now that I can again do things, and though perhaps some of these things are not productive towards healing myself (still my goal), they at least allow me to feel I am contributing.

            For instance, I am cooking more. I joined a CSA (Community Supported Agriculture) and every week pick up large quantities of produce from the farm, at this time of year a lot of greens. So, I clean and stem bunches of kale or collards and fix nourishing recipes to entice lovers and haters of vegetables.

            I have worked more in the garden and this year have a tidy and lush garden, a quite inspiring place.

            Instead of asking the men about the house to clean or do chores, I have been able to assume more tasks. Washing dishes isn’t the excruciating, time-consuming job it was before the medication.

            I can write again, and fill out the endless forms for camp.

I can forget my glasses at the other end of the house and think nothing of walking back to get them.

If it sounds as though I am touting the glories of medication, and in a way I am. It is like a miracle. If in the long run it turns out this was a big mistake I’ll be sorry, but for now, I am happy.

I Am Attuned

Reiki is energetic bodywork, adhering basically to the same theory as other Eastern systems that I’ve studied. Last Sunday, Michele, a Reiki Master with Rena, her student teacher covered the first level of Reiki with me, the only pupil. I observed a treatment, and after being attuned in a short ritual intended to open me up to to receive cosmic energy, tried giving a treatment. I also received a Reiki treatment. Since the class I have practiced on two people - my son and my mother out in the studio where I have set up a table that is very tranquil and private.

            Reiki addresses the phenomenon of blocked energy, which in theory, impacts overall health by stalling the natural movement of energy through the body.

            In a Reiki treatment, the practitioner lays both hands gently on areas of the body i.e. the chakras. While the hands remain in place there may be sensations, visualizations, memories, or thoughts that arise in both the practitioner and the recipient. For me, I am focusing on the person’s intention, what they want from the session, and largely trying to sense the energy in my hands and in the area of the person’s body I am working on.

            What I like about it so far is the opportunity it gives me to focus on energy and feelings particularly in my heart. My heart is responding quite noticeably – a kind of whirring sensation sometimes. The act of trying to channel cosmic energy through myself, my hands and into someone else’s body is a potentially very powerful exercise. For me it’s similar to the meditation I practice, except I am not alone.

Contemplating Happiness

After two weeks of a dose of .75 ml. I started on 1.5 ml. of Mirapex. There was a return for two days of mild nausea and drowsiness, but that has passed. Yesterday I had a busy day and felt energetic with no need of a nap. I was up at 6:00 a.m. and bed at 11:30 p.m. (though I did briefly doze off watching a movie that evening). This morning I am walking well, planning to work in the garden and do household chores as much as I can on what promises to be a very warm and humid day.

            I have wanted to read a book on the brain and have begun reading Harvard psychology professor Daniel Gilbert’s, Stumbling on Happiness. It’s marvelously funny while describing the complexities of the human mind. The book is quite different and even in some ways oppositional to other books I have read recently, but perhaps it melds with my new, albeit half-hearted acceptance of modern science and drugs. The Mirapex roving through my system is supposed to be honing in on my brain’s dopamine function. I am amazed that the manipulation of a tiny process in my brain that by the way, I don’t understand is producing such a dramatic difference in my life.

            I feel happier in a physical way, because at the times I am using my body it is moving more smoothly with less effort. Before the Mirapex I was feeling happy in a spiritual way, some of the time, because I was working, through meditation and other methods, on acceptance, gratitude and awareness of the present moment. But when I found myself trying to do tasks and struggling with them, I became discouraged. It’s hard to be happy when your options in life are so limited.

            I am beginning to hope that I can do some of the things in the future that I thought were unavailable. My frontal lobe, the portion of the brain that plans for the future, is enjoying imagining my prospects, though my recent training has me focusing more on happiness in the here and now.

Five Days In

What really pushed me off the high board was talking with two guys at the PD Tango class. Both are older than me and are on a levadopa medication, Sinemet. Wayne said he was like me, not taking drugs, and walking with a cane. After starting the Sinemet he “got his life back.”

“Look at me,” he said holding out his arms, “I’m normal.”

Walter plays golf and had just gone 18 holes carrying his clubs.

Now it’s been five days since I started the Mirapex. Mirapex is an early Parkinson’s medication intended to postpone long-term use of levadopa.  I am clearly improved even in this short time. Oddly enough, I am doing the best in the evening. By early afternoon I need a cup of coffee, but otherwise I’m feeling well. On the third day I went to a restaurant with my son and walked in and out without assistance, like “normal.” I used the electric cart at the supermarket today, but I actually considered whether I needed it or not. I did need it as I was scuffling this morning.

            I am curious to see what comes next. The pleasure of improvement is outweighing the feeling of guilt for giving in and taking the drug. For now, I am pleased.

A Big Decision

I've been having a terrible time walking lately, even just around the house. I do little baby steps and use a stick, or stumble and lurch if I want to go faster. I can skip though, even run a little, and dance, oddly enough. I have two new dance classes. One is Argentine tango for PD, the other is PD dance developed by the Mark Morris Company, a Brooklyn based modern dance troupe. I also started morning Qi Gong classes with Ruth, so I’ve been quite busy with classes, all with the goal of healing myself. Yet, I keep going downhill, with symptoms worsening.

            So, three days ago I found myself holding a little white pill in the palm of my hand, agonizing about whether I should take it. For the past 24 hours I had been extending the question to the higher powers hoping for guidance, a message: should I take drugs or not? With the Mirapex in my hand I was still not getting a message, unless it was the fear I was feeling, or the certainty that this was one of the most difficult decisions of my life. Like standing at the end of a high diving board trying to decide whether to jump or not, I ended it by suddenly, impulsively, taking the leap and popping the pill in my mouth. I rationalized, I can still change my mind. I can stop at one pill.

            I closely monitored my body’s reactions. That afternoon I grew bleary with sleep during co-counseling as I tried to listen to Meryl for a half an hour. I experienced feelings of nausea and lots of hiccups. In the middle of the first night I woke up with terrible nausea and on the way to the bathroom became blind with dizziness. I curled up on the bathroom floor. When I tried to rise, it happened again. I felt like I was dying. I thought if this is what the medicine does to me I’m not taking anymore.

            When I woke up in the morning I felt fine. I decided to give the medicine more of a try. I felt short periods of nausea again the second day, but nothing terrible. I did notice a slight improvement in my walking. I was able to walk carrying a half full watering can, something I had trouble with two days before. This seemed incredible – the doc had said it would take two weeks before I felt any change, if then, but today the third day, I definitely see improvement in my walking.

            However, there are serious side effects to be wary of. I have put my family on alert, and I plan to continue the experiment to see if the benefits of the drug outweigh its possible dangers.