A New Rx

Since my last post about three months ago I have had a change in medication. Much sooner than I expected, though I had expected it one day, the Mirapex lost its efficacy. I was back to stumbling and struggling to walk even though the drug dosage had been raised gradually to its highest limit. I made an appointment with Dr. V who again as expected, prescribed a new drug to be taken: Sinemet.

            I had heard of Sinemet from my PD dance classmates. I also knew that it was a levadopa drug and the most commonly taken drug by Parkinson patients. After some discussion about other drugs I had read about during which he was fairly patient (I am a cooperative patient at last) and about drug studies he had read, I began to add a half of a 3 mg. Sinemet pill three times a day in addition to the 4.5 mg. of Mirapex I was already taking. He told me that the combination of the two was beneficial because they each performed different actions in the brain.           

            Within a couple of days the Sinemet kicked in. I could walk again. I called Dr. V two weeks later and was told to continue the course.

            I must say the drugs have been a big influence on my daily life. As I look at my last post in November of 2011 I notice that since then I have been veering from the contemplative to a more active mode. Is it only a physical response to improved mobility or is it affecting my psyche, my spirit? These are drugs that act in the brain after all where, I’m guessing, at least some of “spirit” exists.

            Anyway, I hope spirit exists inside me somewhere and is everywhere in all the activities in which I’m engaged. Anyone should not have to go to church or meeting or meditation position to be spiritual. Ideally it should be a part of our daily life - in gardening, cooking, cleaning or talking to a friend. Is this an impossible goal?

            Gurdjieff wrote, “Remember yourself always and everywhere.”

            I can only wonder, am I anywhere near doing that? I am living life with a spirit of joy almost everyday. That may be something like it.

Spiritual Matters

I don’t know if I am a spiritual person, that is someone who has developed their spirituality or is innately spiritual, but I have been spending more and more time involved in study of spiritual matters.

            Recently, it was prodded by the Santa Cruz group, the PD Recovery therapists. When I visited them in 2010 the spiritual aspect of healing was pervasive in their approach, particularly from JJ who has a wide-ranging knowledge of religions and spirituality. Two of the fundamental instructions they gave me were to meditate and pray daily, and I have tried to do so, with varying regularity.

            But earlier in my life, beginning in the mid 80’s, I was part of a study group that discussed the writings of George Gurdjieff, whose teaching is called the Fourth Way. The Fourth Way is a system of self-development. I also met privately with the group’s teacher who did bio-energetic work based on the psychotherapist/researcher Wilhelm Reich’s ideas. I still highly respect all of these teachings, but I don’t know that they took me very far in my own development. Perhaps I was just dabbling, or something kept me from truly absorbing and healing from the teaching and therapy. Reich would say it was “armoring.” 

            Adding to my list of spiritual explorations, I have for the past two weeks gone to Sunday meetings of the Buddhist Meditation Group in my town. I know and recognize one person only - Linda is in my clay class and told me about the group. Who they all are and where they come from I have yet to learn, but I met with them in the living room of an ordinary house for meditation and chanting. Last time we also watched a video with Anam Thubten Rinpoche, the guru I assume, for this group. Whether I will persue this long term or drop it as I have so many other practices remains to be seen. 

            Exploration continues.

A Psychic Medium Show

I don’t know what to believe about psychics and mediums, but I recently went to a psychic/medium “show.” I truly didn’t expect to communicate with deceased loved ones, or even angels as it was promoted, though I wasn’t averse to doing so either. I waver on the line between skeptic and believer. However, I had passed the anniversary of the death of my son the day before so there was a certain consciousness of death being present around me.

            Arthur was waiting seated before an assembly of a few attendees when I entered, talking casually about his profession. Eventually when the seats were filled he began a description of how he came to be a psychic/medium and told anecdotes about accurate predications he had made and verifiable spirits with whom he had communicated. Lots of jokes gave it the feeling of an entertainment, which it was.

            In the next part of the show he came to each of us in turn to give a reading. He said that he might be getting messages for anyone at anytime. Even though he might be talking to another individual, if what he was saying seemed to fit someone you knew who had passed on, you should raise your hand.

            As Arthur did with each of us, when it was my turn he took my hand. He crouched down to look at me – I was sitting on the floor – and described a child’s game, the cup and string telephone. I looked at him and shook my head. Then he suggested simply, “The Little Rascals?” I shrugged my shoulders. “Yes, we watched The Little Rascals…” Behind me a woman’s arm shot up. As she did several other times that evening, she said she thought the message was for her.

            Arthur came back to me after talking with the woman, giving her a message from Uncle Joe, or whomever. I gave him my other hand jokingly, suggesting that that one might work better. He stood and holding my right hand, looked off into the distance before saying to me directly, “I see a lot of criticism around you when you were growing up…. it stunted you.” Then, “You have trouble expressing emotions – not angry or mad – but expressing your feelings to other people… you should say what you mean and mean what you say.”

            He talked to everyone in a general way about how children are damaged, by their families mostly. Then he gave me one last message: a prediction. “I see you in a black church, with black people singing. It’s very excited singing, they have their hands in the air.” I nodded my head as he spoke. “I bought tickets!” I told him. I had a day or so before bought tickets for a performance of Neshana Carlebach with the Pleasant Fields Baptist Choir. The choir is from the Bronx and they are all black.

            Last night, I went to the concert and joined the choir in singing joyfully and raising my arms above my head.

            I have been thinking about what Arthur said, about my childhood and my trouble expressing emotions. It had truth to it. And I have been wondering about the toy cup telephone and The Little Rascals and what else would have been said if I hadn’t been so wary, so skeptical. Is it possible it actually could have been the beginning of a communication from a nine-year-old boy?

The Wallflower

 

I’ve turned 55. I think that still qualifies me for Early Onset PD. I don’t know. There is also Early Onset Alzheimer’s. Unfortunately one of my in-laws was recently diagnosed with it. Understandably, she is depressed. It makes me feel actually blessed to have PD.

            I have decided to walk more, especially since I can thankfully. In the fall, of course, it’s a wonderful time to walk. If winter proves harsh I have my stationary bike installed now amongst the plants in the greenhouse or my Gazelle in the bedroom to keep up the momentum. I have been going to Gentle Yoga classes twice a week, and Tango on Pine Street at least once a week.

There was a Tango Festival at the University last week. I signed up for one workshop and biked up there despite a bad ankle after window cleaning that morning. I quite forgot about my ankle and did fine dancing with college boys and visitors from out of town. In the practica following the workshop, I stuck it out for and hour dancing with one of my Pine Street classmates and one fellow from Maryland. Then I sat and watched the couples dancing. I noticed that everyone was much better than I. There were lots of men and very few women lining the walls of the room, but no one seemed very interested in dancing with me - maybe because I was cringing with embarrassment. I noticed my ankle was sore again and slipped away. I heard later from my teachers that the level of skill at each evening Milonga was high, so it’s just as well I chickened out, though I had seriously considered going to one. I’ll keep taking lessons though, and who knows, one day I too may be wowing the wallflowers.

What's Next?

 

It seems I have reached the peak and slid down the other side, but just a short way. I am functioning well at the same dosage as before, however my walking, for instance, is not as impressive. I struggle and shuffle at times. I haven’t been able to keep up a smooth walk for very long although I was able to a couple of months ago.

            I don’t want to get into an analysis of my symptoms here – a dreary description of my defects. Instead I wonder - did I think I was going to be maintained forever at the same level I was early in the drug treatment?

I had read in J.J.’s book and elsewhere that PD drugs lose their efficacy over time. I had no idea how long the Mirapex would be effective, the doctor would not tell me, and while I was enjoying the benefits I didn’t fret about my eventual decline. I don’t now. I am doing well, so much better than pre-Mirapex; only the idea that I could return to my job is less plausible.

Perhaps this journal now becomes a record of drug therapy. Will I go on to increasing my dosages until they are so high that I must shift to a new medication bringing with me new symptoms and side effects gained from the drug? Or will it be all good – a steady progression of falling into new ways of treating the disease with palliative drugs?

Or will I find that continuing with meditation, prayer, and working to change from the inside out will facilitate genuine healing? It has become harder to do this work these days. I’m distracted by all the things I can do physically. My old manic energy wants to reassert itself and take me away. I pray that it won’t, but it wakes me and keeps me awake in the middle of the night. It is that powerful.

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.