Flocks of Birds and Mummified Bodies

I typed this line (spelling errors corrected) into an email late one night about being dropped from a MeetUp list:

That’s fine - remove me from your list. But can I still trust flocks of birds 
and mummified bodies from now

Fortunately it did not get sent. I found it later in my drafts folder. So what does this missive mean?
It means that I keep going, fighting sleep as I push myself to do more, writing emails late at night when I should be in bed.

I sleep a short time each night. Usually 5 hours at the most. Sleeping aids that I've tried do not help. Something in me wants to make the most of my waking hours. So much to do, so much I really want to do.

I woke up this morning around 5:00 and started thinking about a trip to visit my aunt in Florida. She proposed it again in a FaceBook message. From there why not go to Mexico, the Yucatan, or Costa Rica or Peru and Machu Picchu? I have never been to these places and have been longing to see these equatorial lands. The thought made me jump from my bed, but with no meds yet in my system, a shuffling walk took me to the computer to research the possibilities.

"Something in me wants to make the most of my waking hours." My 60th birthday just passed. My desire is to make the most of the remainder of my life. I want to follow the birds, not become a mummified body.

Slightly insane with ukulele friends at my 60th birthday party

Another Season

Change happens, and even little changes nudge my life into new paths. Some things as they say, "fall by the wayside," and other things take their place. My life is not as full as it once was in some ways, but where there are holes, I usually fill them up again.

Before I started taking meds, things were dropping away relentlessly. I couldn't do many things that I used to, or they were too hard, too slow, or too embarrassing to do. The meds have enabled me to take on new things let alone keeping what I already had in my life before the PD. I am grateful for that. 

My side effects are minimal. Sometimes my legs are bouncing or I sway back and forth rhythmically, but its not debilitating or constant. 

So when I started this blog with the optimistically drug-free title, I was opposed to taking meds. The fear of the side effects and distrust of the acrimonious drug companies and medical drug peddlers were strong factors in my postponement of taking my prescription. I still have those feelings, but I accept the drugs as an obvious boon. That doesn't mean they work for everyone. I was lucky - they worked very well for me.

In a few days I will be turning 60. The questions for me now are: 

HOW LONG CAN I KEEP TAKING MEDS AND LIVE A FULL LIFE WITHOUT SIDE EFFECTS?

WILL I EVER DECIDE TO EMBRACE A "RADICAL" TREATMENT APPROACH TO TRY TO ACTUALLY RECOVER FROM PD?

WILL THERE BE A MEDICAL OR ALTERNATIVE AND ACCESSIBLE MEDICAL CURE FOR PD IN MY LIFETIME?

These three questions lead to a lot more questions. Questions are good, I should ask more. And it would behoove me to do more research in the area of PD, but I have not. I blithely pass my days in activities many of which, I believe, are helpful to my condition, and some maybe not, but thanks to the drugs, I forget at times that I even have an illness. That is wonderful - to forget - and just LIVE.

The Delaware River from Goat Hill in Lambertville NJ
(also the photo above is from the same hilltop)

Run Through the Sun

I have started a running program. With advice from a very engaging online guide to running put out by the NYTimes, I began "to run" in earnest.

I didn't run so much as jog and I didn't even do that the whole time. At first I used a timer: run 1 minute, walk 2 minutes, run one minute and so forth, to complete the first distance of one mile. Every week I added 1/2 mile to my course, making a loop from my house and going through different neighborhoods as the distances increased.

Recently I have begun working without the timer, instead running to goals I see ahead and walking less. I am going almost 4 miles now, but still walking part of the time.

The advice from the NYT was to immediately sign up for a 5K race, so you have a goal to strive for. I had a race picked out, but I didn't follow up. I am still going out though, and maybe, when I don't walk anymore (if that ever happens), I will try a race.

at an inn at the Jersey shore

It is NOT easy.

Before I go out I have learned to:

• wait until my meds kick in
• to stretch my toes, ankles, and feet especially
• to drink water and eat a fist-sized amount of food
• wear cushy running shoes, and sun protection
• pack my phone and reading glasses

I allow myself to sit down and stretch my feet if they are bothering me. Though once I suffered through with throbbing toes, it made me dread going the next time. I need to make it NOT be torture or I could end it all. The best running was barefoot along the water line at the shore. My feet did not bother me at all - no! They were happy feet.

Now to see, is it helping me? I believe it is strengthening my body, definitely but is it effecting the PD? My suspicion is affirmative. My task to really find out is to continue to push myself, to run longer and farther. Can I do that? I am not known for sticking with my plans. Send me some fortitude, Oh Universe!

The NYT Guide to Running

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.