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

Music, Music, Music...

The PD creeps in with symptoms surfacing before the next dose is scheduled, yet in this season, I am so busy, I can't let it stop me. I have taken doses earlier than scheduled and an extra dose in the evening if there is something going on that I want to do.

Dr. V made no comment when I told him this, but he prescribed an ER form of the Carbidopa Levadopa to make it longer lasting. I'm not sure if there's a difference yet after only a few days on it. "Exercise," was his last word to me as I left his office.

The big show of the year took place last night for my chorus. The full to overflowing crowd gave us a standing ovation. I know I put my best effort into it, focusing on all we have learned and on the director right in the moment. Her frequent exhortations during rehearsals to keep moving were answered by my new involuntary weavings and waving, side effects from the drugs. I worried sometimes they were weird or spastic looking. Whatever they were, probably they were not much different than those of my choral sisters.

That's me in red.

I am in two choral groups now, one is seasonal, and also the singing, ukulele playing foursome, "The Woe Nellies," All three are active this weekend starting Friday with the JHC show last night and finishing with the Cotillion Singers on Sunday night when we perform at the Princeton Contra Dancers' Cotillion, their big holiday event at the Trinity Cathedral in Trenton. Actually, on Monday night, at our JHC holiday party at our director's home we will be singing holiday songs and we will also try out, for the first time, our next contest tune, "When You Wish Upon A Star."


So, exercise in the usual sense has taken, some days, a back burner, but my vocal chords and my whole breathing mechanism has had a work out lately. I am following the advice of the physical therapist who began with the query, "Do you sing?"

"i am still alive"

new clay work

On my other blog*, I wrote recently about an artist, On Kawara who regularly sent out telegrams that simply read, "i am still alive." He died two years ago, but I am still here, very much alive and kicking.

at Art All Night with Pam

But wondering, when will I take action and try to do something about this disease? Why am I still taking pills and ignoring the fact that underneath, I am harboring symptoms, and possibly, progressing in the disease?

playing Derby on the Rahoboth boardwalk

Simply, it is laziness, and also a desire to do what I want to do which is make art, play music, sing, garden, cook, travel, and go out or entertain friends. 

with my Mom in Ireland

I am getting a bit shaky in between doses - my legs are jumpy, I sway rhythmically, unconsciously, and I shuffle - walk and move slowly. I watch, I wait, I notice what's going on, then I forget and get involved with my activities as the dose kicks in.

down the shore

I am still alive, but I have PD. I'd like to forget about it, but I had better not. I can forget sometimes, but later, it may be harder to ignore.







*elsclay.blogspot.com

Whoa Symptoms

Some days I forget to take my pills, and on other days I need them before the scheduled time. What is the factor that causes the two effects? Yesterday it happened that I forgot. It was 1:30 and I hadn't taken my noon dose. Significant to this may be the "Lite Latin Dance" class I had taken that morning at the gym. Is dancing the reason for my symptoms delayed onset?

Some days I think I need to talk to the neurologist about increasing the meds, but I always hold off. Now I am glad I have. I want to experiment more with the exercise component. What exercise delays the need for medication, and is it reliably occurring?

So much is happening in my life now, so much to remember and try to do, or so it seems to me. Sometimes they are small things each day - a repairman coming, a furniture delivery, car to service, supplies to order. Then there are the art and household projects I create. Most recently, in the years since I retired, there are also people and organizations that dominate the days of my life. I list them here to get a handle on it for myself:

Chorus: Jersey Harmony chorus, a Sweet Adelines group
Woe Nellies: the ukelele group I play with
The Suppers Program: with a monthly meeting with a meal at my home
CoRe and Creative Collective: art groups I belong to
Re-Evaluation Counseling: twice a month with individuals
Gym: going regularly now with a friend to yoga, dance, etc.
Pennsbury Manor volunteer (fading out)
Sewing Space at HomeFront volunteer (pending)

More than ever in my life I know and associate with people for many things. In some organizations (chorus, Suppers) I have become known as the creative one, and am given artistic jobs to carry out. All the personal relationships in these groups have become very nourishing for me.

I don't want to have to cut anything out of my life because of disability. I take these miraculous drugs willingly to keep doing all that I want to do. If anything has to go, let it be because there are not enough hours in the day, not because my body says it can't.

A New Year, a New Diet

Everybody's into making themselves anew in the new year, and fat from feasting over the holiday, we hit the gym and try to sweat away the extra pounds, or do a cleanse to remove the toxins ingested or inhaled during the holidays.

I joined a group diet through the Suppers Program that follows Dr. Joel Fuhrman's "Eat To Live" diet protocol. I am now in the 9th day of what I plan to be 6 weeks of strict adherence to eating only fruit, vegetables, legumes and nuts and seeds. A small amount of whole grains are allowed, but no sugar, no oil or other fat, no coffee, meat, eggs, fish, dairy, salt - no to all that. There are three meals a day of all I can eat of greens, cooked and raw - one pound of each is recommended. Mushrooms and onions are especially singled out to be eaten daily.

And NO snacking.

The hardest part is learning to cook without oil, or salt. And no snacking can be hard when 10:00 p.m. rolls around and I long for a bite of something crunchy, salty or sweet. I am spending a lot of time in the kitchen trying out JF's recipes or adapting others to fit the diet.

What is the goal of this diet? Many people have experienced dramatic reversal of symptoms on this diet, especially those with inflammatory diseases and conditions such as rheumatoid arthritis, and also diabetes, high cholesterol and high blood pressure have been reversed or symptoms alleviated. As for Parkinson's, I don't know of anyone who has reversed symptoms with this diet, though that's not to say it can't be accomplished. This is my experiment. First, I want to lose weight, second I want to feel better, more energetic, alive, and if I can keep my medications from having to be increased, or can reduce them, that would be great.

Eliminating medication. Now that would be a dream come true. I don't give up hope that someday, I might find the path, the one that I can personally follow, that leads to recovery.

Me with my dear family

Hanging In

at The Crossing Winery

Still no increase in meds - I avoid it - wait it out or take notice then act when I see a slump in my mobility.The action would be exercise or sleep or proper food, something that I may have been neglecting. So far I am managing well, though there are always lapses.

with friends and my 3 sculptures in the TCNJ Alumni Show

I am living a full life. I am happy with what I am doing. I probably would not be able to do what I do without the drugs. So I am grateful for them, but apprehensive about what the accumulated effect of years of drug taking will have on me.

spice jar set

I am working hard in the studio making things from clay. Since the spice store in town has taken my wares to sell, I have become obsessive about producing a lot of pieces, and work long hours. I work for a few weeks until I have enough for a bisque firing, then when that is done I glaze for a week or so and then do a glaze firing. That is the most exciting part - to see the colors and finishes on the clay forms after the glaze firing. Sometimes there are jewels.

celebrating our wedding anniversary

Much of the time my back hurts, but I suffer through it to keep on producing - new ideas, variations on old ideas, and experiments with techniques I learn about.

I am forcing myself to exercise before I go out to the studio. I have learned the 5 Tibetan Rites and some mornings I do them, or I use the exercise equipment in the house. Very rarely do I go to the gym. I have work to do, and travel to the gym takes time!

It is a full life for me because I am creating, and now I know that that is what I really want to do. I forget about Parkinson's. I am grateful I can, at least for now.

Backaches and Breathing

 In a raffle at the Suppers Program celebration of Dor's birthday, I won a couple of free sessions with Deborah, a physical therapist. Her specialities included working with people with neurological issues, so I threw my ticket in the jar and voila! She came to my house yesterday.


I believe I got some valuable information. Mainly we talked. She asked if I swim. Yes, not much, but I do swim in the salt water pool at the gym. She suggested that I especially try swimming on my back and kicking my legs from the hip joint instead of the little flutter kick I usually do. She mentioned several times that the full extension of the leg is an important factor in exercise for flexibility.

Do I sing? Well, as a matter of fact... I didn't expect that question, but I certainly do - in a chorus, and with my ukelele and with others. I sing with Kat once a week and with family and friends informally. And why do you ask?

It is all about breathing. Most of us, Deborah said, hold our breath and are not even aware of it. I said, "Yes, I know I do. I notice it when I'm working in the studio. I am holding my breath when I'm concentrating. And why do we do it?" I asked. She talked about a baby getting silver nitrate put in their eyes and it hurts and they cry - they fully discharge what they are feeling. But as we get older we are told not to express our emotions and along with that comes the breath being suppressed. It helps with suppressing emotions, to hold your breath and wait for the feelings to pass. That's how I understand what she told me.



So SINGING. You can't sing and hold your breath. She sings all the time or rather VOCALIZES. Any kind of vocalization works to keep you from holding your breath. She always sings as she walks. "What do you do when you pass people," I asked, knowing I would feel embarrassment. "I usually quiet down to a hum," Deborah replied, "but I usually find that people are tickled pink that I am singing while I walk."

Before she left I asked for advice on exercises that might help me when my back starts to hurt after working in the studio for long periods. She said that the most common cause of back pain is from holding your breath. I was surprised! She asked where the pain was in my back. When I showed her she described the anatomy of the diaphragm which connects at the area of the back I had indicated, and somehow, though I can't recall now, holding the breath affects the back via the diaphragm.




My task now is to work on breathing, maybe singing or barking or laughing or humming or whatever. I will try to be a noisemaker much more than a quiet mouse about the house. If you walk by you may hear me.