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.

What I'm Doing Now Update

There have been many posts chronicling therapies, strategies, treatments, education all to do with my diagnosis of Parkinson's Disease. Most have gone by the wayside, but have made an impression and been incorporated into my understanding of what this condition is and how to deal with it. It is not a full understanding by any means. It's one that sits on the back burner still cooking and being added to.

As an update, I will simply list what I am doing now.

Dietary
1. Suppers program: I host a monthly Suppers meeting at my house on the theme of "Healing Spices."  Guests prepare, eat, clean up together and learn about healing properties of spices, food preparation and healthy foods.
2. I attend other Suppers meetings that are offered from time to time. One I plan to attend monthly is called "Weight Loss Strategies."
3. Started a diet officially with a sign on the fridge with rules for eating (No sugar, no snacks, etc.) and a food journal.
4. Supplements: Just started a supplement with the compound contained in turmeric - curcumin, fish oil capsules, potassium, vitamin B complex, C, D, E,

Exercise
1. yoga, Body Flow, Will Power & Grace and other classes at the gym
2. Tai Chi Chih class
3. stationary bike at home (in winter)
4. walking (but not regularly)
5. gardening (now that it's spring I am starting again)
6. housework (I do all the cleaning, shopping and cooking)

Medication
1. pramipexole
2. carbidopa/levodopa

Music
1. Chorus: I sing in rehearsals 2 1/2 hours each week, weekend extra rehearsals, weekend retreat, competition, singing gigs and practice at home.
2. Ukelele: I am singing and playing once a week with a friend, have attended Meetups with a ukelele group and practice on my own.

Psychotherapy
1. Re-Evaluation Counseling (RC): I have 2 co-counselors I meet weekly on alternating weeks, and one who I meet with once a month (in the books sidebar, see author Harvey Jackins)

Reading for PD
1. Healing Spices, by Bharat B. Aggarwal PhD and Debra Yost
2. The Wahl's Protocol, by Terry Wahls

Art
1. Raisin Studio: my clay studio, the activity that is most important and where I spend the most time
2. Drawing in my sketchbook mostly with marker or colored pencil
3. Fiber arts: made two wall pieces recently
3. Visiting craft shows (especially to see ceramics), art shows, art museums
4. Pinterest: I have several boards. I add images of my work and of other artists'
5. Member of CoRE art group: meet with members to support one another, choose themes, and plan  art shows

Writing
1. El's Clay Blog
2. PD Journal No Drugs No Worries Blog
3. Daily handwritten journal

Am I doing enough? I am doing a lot I think, but am I doing enough of the right things? Good Lord, why don't I beat myself up? I am DOING THE BEST I CAN, AND I KNOW IT'S RIGHT FOR ME RIGHT NOW! This is my RC training speaking.

The Face is Winning

Christine and Me

Is the smile big enough yet? To sing in a Sweet Adelines chorus is to stretch your smile muscles.

"Eyebrows and cheeks lifted, smile, show your teeth, tell the story of the song, be expressive, look excited, stand like a champion." These are common exhortations from our coaches and our director. Along with the sound, in fact assisting the sound, is the performance. Even in rehearsal we are asked to go all out - we are "always performing." Something about the lift in our faces and bodies helps us to lift the notes and maintain the pitch.

This picture was taken at the banquet following the regional chorus competition this past weekend. Christine and I are the new members of the chorus. Possibly, we contributed to the improvement in the score our chorus received which was 50 odd points more than last year. Anyway, our director was pleased, and we all had a good time singing into the wee hours and listening to quartets that visited us in our hospitality suite.

My face and my body have been well exercised which I know is excellent therapy for PD. And singing from the heart is the icing on the cake.

Therapy for the "Parkinson's Mask"

People diagnosed with Parkinson's can be blank and expressionless, and are often more so as time goes on. How to combat this? It's actually imbedded in me from way back - part of the armoring I acquired from years of ridicule followed by years of fear of ridicule. Just keep your face blank and no one will bother you was the reasoning behind this, although it was largely unconscious.

But there were times in my life something else emerged. The toddler visiting at all the tables in the restaurant my parents were dining in, the Thanksgiving and Christmas plays my neighbor and I would create to entertain my relatives, the dance my high school friends and I performed at the variety show; these are all examples of times when I was outgoing and showed an eagerness for attention and admiration. 

I always liked to sing, and I readily joined in at sing-a-longs. I remembered fondly the days of high school chorus practices and performances, so when I saw an ad for  new members needed with the Jersey Harmony Chorus I joined up. I had not the dimmest awareness of what I was in for.

Now I am being asked to perform full throttle, meaningful, expressive delivery of a song in company with my equally effusive female chorus members.  It is the world of the Sweet Adelines. Sweet Adelines come from the men's Barbershop tradition of four-part harmonies. I sing lead, which means I sing the melody and therefore am even more duty bound to be expressive and tell a story with a song, not just by words or melody, but with my face and body. My chorus is a performing chorus.

Jeannie, the vocal coach at last weekend's chorus retreat asked us to go "over the edge," and move and show expression in our faces until we thought we must look crazy. After we were done she asked us, "How was it?"

"It actually felt good," I said.

"You've had an epiphany." Jeannie said. She told me that what I did was not over the edge, but was actually "just right."

The chorus is an opportunity to work on the "mask" that wants to settle on my face and never be removed. It only now occurs to me that by serendipity I have actually stumbled on another therapy for Parkinson's: performing with the Jersey Harmony Chorus.

Singing with the a few chorus members at Palmer Square at Christmas time
(that's me in the long red scarf)