Can I Cope?

Life is change, no getting away from it. And would we want it any different? If nothing ever changed, even the most charmed life could become dull and lifeless.

My big change is the arrival of my 91 year old widowed mother who has moved in with my husband and I. She always intended to move in with us when her husband died, and we always promised that she could. My mother-in-law after all had lived in the back "mother-in-law" suite for years before she died at 81, but she was healthy and mobile for all that time until the last few months when she was in a nursing home. 

However my mother is not getting around well and in fact, can't manage to care for herself. She can't fix her own meals, do laundry, clean, shower, or take her own medications.

My mother begged to come live with us. "I'll give you all my money!" she implored. "It's not the money," I told her, "I don't think we can care for you properly." I thought of all it would mean to have her with us, the changes to our home logistically, the time we would need to devote to her care. I said no.

Eventually I relented, and after an overhaul of the downstairs bedroom, we moved her and her possessions and incorporated them into our household. She's been here since the end of April, and since then she's been to the dentist twice, an internal medicine doctor, a podiatrist, physical therapy twice a week, and this week, she sees a psychologist, an oral surgeon and a hair stylist for a permanent. I spend quite a bit of time making appointments and filling out health forms as well as all the daily needs of someone who is disabled. 

I think I've attended a Rock Steady Zoom once since she arrived. There's no time, and she's in the space I'm accustomed to using to do it. I tried to follow a yoga workout while she dialed a friend and chatted next to me for the duration.

So I record this now to see if this life change will have an impact on my PD symptoms. So far I am okay. I still, usually, do morning exercises and qigong, but no cardio. So much else though is falling by the wayside as I focus more on caring for my mother. Perhaps there is a reward for doing good works for an aging parent; perhaps caring for others is a self-healing act. Or is it, take care of yourself first before you try to care for someone else? A little of both I think will strike the right balance.

15 Years With PD

Yes, it's anniversary time! Celebrating 15 years since I was diagnosed with Parkinson's Disease. 

I can celebrate because I'm still kicking, literally kicking in Rock Steady Boxing, and I can't complain; I'm feeling happy and fairly hearty. 

Zooms have been incredibly helpful to me. Boxing on Zoom, drumming on Zoom, Shakespeare for PD on Zoom, and the internet and computer to find and save files of lectures like the Qi Summit workshops on qigong. I feel a  part of these communities, some of which were essentially formed because of the pandemic.Today I joined a PD live health and  exercise Zoom called PD Prime. I'll try out the various classes for 30 days before i have to pay.

So I celebrate my body, my brain, my heart that are all functioning, with not perfect utility, but splendidly for such a dire prognosis: "It's progressive, you'll get worse and worse until you die." 

Well, some things are worse - my handwriting, my jumpy legs and feet, the ache in my legs when I walk (not always though), but most symptoms are stable or even better. I have not increased medications,  I sometimes take less. But if I forget to take it - that's a no-no. I can be dragging my feet at the supermarket or trembling as I try to conclude a sale at the art co-op if I go too long without a dose. 

I am thankful and figure I must be doing something right. However, if I did MORE, more of the right things, less of the wrong things, how much better might I be?

The 3 Centers

In my last post I wrote about what I am doing to develop my mind and emotions with the intention of ultimate healing from Parkinson's disease. You may say, what do the mind (brain) and the emotions (heart) have to do with what is a disease of the body? And isn't it true, you also may say, that there is no cure for Parkinson's?

I choose to have hope and believe that there is a possibility of healing from this disease, though honestly, I don't know that I will be able to. I think it takes a great effort, and I may not have the strength or will to achieve total healing. But I believe that most illnesses are a product of stress of some kind, and the mind and emotions play a role in responding to stress. So I add them to my portfolio of health strategies with a goal of stemming the progression, at least, if not totally healing from Parkinson's.

Almost all the physical activities I take part in have an overlap with either mind or emotions or both. Rock Steady boxing for instance, has a social, group aspect (heart) and challenges to the brain too, usually coordinating the body with the mind, such as remembering a sequence of punches or steps. The program is designed to be a whole body exercise including emotional and cognitive exercise.

Qigong (chee-gong) is the perfect integration of mind, heart and body. Relaxation of and awareness of the body are key. It's meditative exercise, some of it moving, some in stillness. Some practitioners of qigong visualize energy (qi) entering and healing their bodies and toxic or stale energy being swept away. Others focus only on the sensations of their body, in their physical heart, brain, gut. As I learn and get deeper into qigong practice, I try both approaches, and think they can be done simultaneously.

More to say about all this... next post. 

Confidence

Since my last entry, more than a year ago, I have been relatively stable - not progressing much, maybe improving in some ways while slipping in others. I credit it to the work I do on my whole self. By that I mean all my centers: head, heart and body. I think it is essential to address all three in order to heal, or that's what I've learned. 

I enjoy the head part. I like to read and have a time in the morning that I read more challenging material such as biography, history, poetry, philosophy, religion, any non-fiction. I discover new ideas, thought provoking ideas, inspiring stories, but some readings are not to my liking. I discovered that I hate Nietzsche. 

During the day I may read the newspaper or a magazine. At night I read a novel, always in bed before I go to sleep.

Another head activity I enjoy is writing as you might guess. I keep a daily journal that I feel compelled to write in every morning. It really is a compulsion. My memory is such that I can't remember what I did the day before, so that is one reason I keep a journal - to remember. But it is also a heart activity. I need to write to understand and calm my feelings.

For the head I also like to play games and puzzles: Scrabble, crosswords, anagrams, and solitaire by myself, and card games, board games, and any kind of game with other people. And this last kind of mind activity also leaks over into the heart side. Being engaged with others is both a mental and emotional activity. We like to compete, challenge ourselves, and we really like to laugh, all of us love to laugh, and games are a great way to stimulate that.

For heart really it is being with people, nature and animals. I will sacrifice any plans for a friend. If I have some private plan of my own for a day I will put it aside if a friend wants to meet, or talk. Sometimes I do it grudgingly at first, but am always glad I did. What could be more important than spending time with a friend?  Grocery shopping? Exercise class? Housework? Cooking, eating? 

Being in Nature is more heart healthy work. I don't go out as much in the winter, but getting out to see sky, sun, clouds, breath fresh air, walk on the surface of the earth, to ground oneself is essential to wellness, so I bundle up and go. 

And being with animals is healing. With our pets the nonverbal, the heart-based interaction makes  us more compassionate. I feel my heart going out to the old, tired cat who we are caring for despite the extra attention he needs. He is another being, just like the bug or the tree or the mountain. I feel my heart pause when I slam the bug in the bathroom. After all, it was alive a moment ago and now it's not. Soft-hearted yes, but I think that's a good thing. I never used to think about it. Now I feel regret for the smallest thing.

 (to be continued)

artwork by Pousette-Dart

Drumming and Humming

I haven't written for a long while, not because I have nothing to say, but because my typing is so bad. I practically have to fix every word. It's frustrating and slow. Even worse is my handwriting though I write everyday in my paper journal. I write a word and I realize it is illegible. I try to fix it and end up by making it worse, so I cross it out and write it again. Sometimes it still looks illegible.    

I read back over my journals, what could be more interesting to me than to reminisce about all my life's occurrences? It is to me. None of it is important in relation to the world and all its dramas, comedies and tragedies. My life is a small drop in the ocean, but it is part of the ocean. We are all part of the same ocean, as Ming Tong Gu says, "an ocean of energy."

My qigong studies continue, and now I am leading a Zoom qigong group every Tuesday morning. For some reason people like it; I have regulars who show up every week, sometimes as many as twelve, but more often only six.  I have three different practice sequences that I know by heart to work with, and I've added things, like self massage and energy warm ups as I feel my way through the challenges of teaching.

I practice by myself everyday. I take an hour or so as soon as I get up in the morning. I've gotten to be quite disciplined about it, but not rigid. There are times when it's neglected, not routinely though. I find myself thinking about the Zoom class as I practice alone, how to improve what I am doing, to communicate more clearly and so forth. It sometimes distracts from what I should be doing - concentrating on my own body, mind, and being. Lately I've tried to incorporate sound healing every day, and standing meditation (but I often sit instead of stand).

Added to the qigong I have started taking a Zoom class in yogic drumming that I really think is good for me and my condition. 

All in all I'm feeling pretty good and happy most days. I have discouraging times, when I find I've lost some ability, like not being strong enough to swim in the surf, or ride a bicycle without falling, or play my ukulele.

It makes me sad to lose these things. But they are going gradually, one at a time, and I adjust. I concentrate on what I can do, and am very grateful when I can add new experiences to my days, that I'm not totally worn out yet! 

Persevere, be persistent! Onward in the effort to overcome and conquer! Parkinson's Disease, I'm not afraid of you!

What I've Lost - What I've Gained

 What I've lost:

      clear, fluid speech

     short term memory

;    long term memory

     nimble fingers, hands, limbs

     facial expressiveness

    35 pounds

What I've gained:

        better discipline

        improved physical fitness

        acceptance

        more appreciation

        new awareness

        true friends 

         

I could add and probably will add other Losses and Gains as I think of them. This is me NOW. I'd like to be more specific and give examples - but later.

List making can be a useful tool.

    

    

   

    

Progress

I feel like I am progressing in reverse, which is exactly what I want to do.

I'm very hopeful.

The western medical establishment declares Parkinson's to be a progressive disease, but I don't believe it. The progress I seek is toward healing, not towards deterioration. 

when my eyes only needed sunglasses

I had cataract surgery, successfully completed, but with a lot of time and effort stretched over two months. It started after a call on an opthamologist about my sore eyes. I was told I had chronic dry eye, apparently a symptom of PD (I blink too slowly my opthamologist said). And then I also learned I had operable cataracts. I'm happy I can see much better now.






I added two more supplements. to my regimen. One of them is for the chronic dry eye, called "Vision Alive." I've taken it for over 6 weeks now. It has compounds from bilberry and blueberry. and for the first time in a long while my eyes are not sore when I wake up in the morning, or during the day, except if I  use the computer too much, or watch a long show on the TV.

a painting from many years back

The other one is a probiotic, made from plants. it contains bacteria subtilis, which I had read is useful in removing harmful bacteria found to be numerous in the gut of Parkies. The bad bacteria may be the cause of the disease.












It's worth a try,  I thought, even if it's only been tried on mice with PD. Since starting it, about the same time as the Vision Alive, I have reduced my daily dose of CL from 5 to 4 to 3 pills/day.
It has only been a few days on the lower doses. I can't draw definite conclusions yet, but as I said, I'm hopeful. I'm on the path.

landscapes are from Block Island