Parkinson's and Celiac Disease

Parkinson's and Celiac Disease

Upon arrival, I sat alone on the sand crying for hours, just marveling. Sipped a glass of vino tiente and listened to the frothy waves harmonizing with the mating calls of irredescent birds. I tried a cartwheel and bought a silly hat as the light receeded.

I’m absolutely drained- of energy and weight. Losing weight is apparently a thing with Parkinson’s, and along with the jagged sleep patterns, these absorption issues are impacting my health. I see the drawn faces in our community, and wonder how to keep muscle and healthy fat on. I’ve tried nearly everything in terms of nutrient dense meals and eat A LOT. Phlebotomists love my veins cz they are poppin!

Not many in the Parkinson’s community have both Celiac Disease (autoimmune) and Parkinson’s (a wide range), but feeling depleted all the time sure sounds familiar. Desperately need a way to enhance absorption. Our community has so many scientists and nutritional experts and I am in need of ideas and Recommendations.

My workouts are fueled by music alone lately. So. Tired. From. These. Symptoms. I’ve had women say wow you’re so skinny you’re so lucky I’d love your body! Be careful what you wish for.

I understand our Tom (Isaacs 💛)had Celiac and PD. Anyone else struggling with this? Am I destined for a Duopa pump?

A Prayer for the Wounded

A Prayer for the Wounded

My children only remember me sick.

They were too young to recall when their mother was unburdened by chronic pain, or when her dancer’s body moved about with graceful fluidity. They have grown up with this menacing shadow, and it’s cruel henchman: crippling depression.

I do not mention this for the sake of regret- this is no feeble martyr’s cry for help! This is merely an intro to raw and painfully honest writing about how this disease affects families, loved ones, friends...

I think of my sweet nieces and nephews. They will never know me at ease, without PD. I make a promise to show them how strong our family can be. Our ancestors did not lift us through their blood sweat and tears so that we could give up.

This is a brutalizing disease. It crushes even the strongest among us, in increments. There is no way to sugarcoat this or pretend like one can become comfortable with it. Of course I’m not cool with it… But what choice do I have?

I won’t go quietly into that dark night. Instead, I choose to stay in the light of abundance and love. Because of the kindness you have shown, and for our children, I rise!

Yes, I am wounded... just like everyone else. This means that more than ever, I am in a position to offer compassion to others.

My constant prayer goes something like this:

May these hands be of service. Allow less focus on my small self or my desires and more on the greater good of _all_ concerned. My work is not done here. Use me, Lord, not where I am most comfortable, but where I may be most helpful.

Photo: Nolan, Ella and Colin. Three of my beloved East Coast Fam.

Long Night

Long Night

So tired of not being able to rest because of the stiffness and pain. The progress of this disease is incredibly cruel. It has taken so much, mercilessly, silently, and without so much as a blink.

My time is more limited than most of my peers. Because of this, I usually play for keeps and take betrayal particularly hard. If I seem bombastic, or too much, it’s probably true. I am not sorry if this alone makes you uncomfortable.

I have much less to lose than you might realize and do not share the same worries, but you may not realize what you mean to a woman who can feel a mountain looming at her gates.

We all have our invisible burdens. I can appreciate what I have, recognize my privilege, feel deeply for others- and understand I’ve lived a good life. I’ve been in love. I’ve given birth. Many do not get the chance to make those choices or feel the opening of big love!

This is a swan song til my body becomes a cage. Maybe a similar recognition automatically happens as we hit a certain age and our people die. There is no escape. I was a big fan of Six Feet Under and it’s profoundly simple series finale.

If you want to hurt my feelings, or make me completely wrong, first consider that my worst nightmares have already come true. Opinion is are the least of my concerns, and there is nothing you can hurt me with that I’ve not already said or thought of myself.

Things and people fall away. I will remember each person I have known by how I felt as they arrived, or as they left. The rest can be blurry. Did we leave one another better than we found each other?

No drama, no despair- just reality. My body is obviously failing faster now because of Parkinson’s symptoms and the side effects of meds. All parkies know what’s coming. This jagged, ever-present awareness is also based upon observation, experience and science. I can feel the downward spiral gain momentum, and I’m ready for what’s coming.

I don’t need to hear more hang in theres, because we all deal with uncertainty and various forms of chronic pain. I’m strong, I’m just weary. Please don’t mistake this for a solicitation of pity, or wallowing in my own sadness. I’m rather impossibly flawed and wounded, and can hurt people...just like everyone else. So this is no cry for help, it’s a statement that I need to put down. It’s too heavy to hide.

My close friends and loved ones are suffering their own defeats, losses, and disorienting grief. I love them so much and only regret I cannot be more consistent with energies, with capabilities, with focus.

Unfortunately, medications and staying active are the only things that control my ability to move and function now. Also, it’s impossible to have a low anxiety level when you don’t know how long you’re going to be able to function in basic ways we all take for granted.

I will continue looking up and out, with no time for or interest in pretenders. If you see me smile, you can know it is genuine.

There is no space left for anything not rooted in truth.

I can’t even get my kids to take the garbage out. I marine crawl up stairs on bad nights. I am not taking in nutrients as before and keep losing weight. These are just a few things bumping around at 3AM.

Rarely do I feel safe and sound, and the news never helps, but I remain infinitely grateful for the abundance of love. Hearing from you and mirroring it back every chance I get feels good.

Even though my basic kindness is too oft mistaken for other things, it is deeply embedded in my nature.

I remember explaining to a former intimate that symptoms and personality flaws are quite different things, and apologizing for causing her any additional trouble. People will see what they choose, based upon their personal experience. Let em. A few gems have come my way with empathy and kindness and _real_ compassion. These are my people.

Thank you for reading what I write. Hoping it reminds you, because I know you hurt too, that you aren’t alone.

Unedited and a bit raw, for the PwP who wrote to tell me she wants to “give up”. That’s simply not an option. Make another choice. I’ll see you there, OK?

Photo: My son used to fall asleep hunched over his sister. He was so protective of her. I hope they are always close.

The Field

The Field

I do not need to diminish or attack anyone else’s experience to speak my truth. It is possible more than one perception or way of seeing can be true. I practice letting go of my need to be understood, or even heard.

How others perceive what they know of me or if they “believe in” me is of little consequence. In fact, the “I” that is perceived does not even exist. We are all in turns mirroring and projecting ourselves onto everything and everyone.

I witness my petulant ego scrambling to be “right”, and laugh. I pat it on the head, offering a lollipop as I buckle it in to the passenger’s seat. Such a cranky toddler...ego!

“Out beyond the ideas of right doing and wrongdoing there is a field. I will meet you there.” 
-Rumi

Who wants to go first?

Who wants to go first?

I am developing a Parkie suit. It will be used to show non-Parkinson’s folks what it feels like. Anyone can try it for free!

It will be made of soggy wool and lead and have pins sticking out all the way from the sacrum to the neck. At every joint there will be an uncomfy clamp adding pressure and permanent aches. It will vibrate intermittently, causing unpredictable jumps and tremors- this will also happen every 1/2 hour while resting or sleeping.

The Parkie suit will make the wearer nauseous and hyper, in turns. Also, it will slowly impair all executive functioning and depress functional mood and memory, while dismantling coping mechanisms. A brace will be placed to press on the jaw to add tension. Every so often it will cause you to lose balance, pee yourself or feel crippling anxiety.

You may take medications while wearing it. We’ll introduce those side effects later...this is just phase one.

Who wants to go first?

What's on my mind?

What's on my mind?

What’s on my mind?

The thoughtful, raw, compassionate, supportive, candid and helpful comments posted under yesterday’s debacle. Your show of humanity made the edges less sharp and infused my wonky chemistry with warmth, humor and familiarity. We feel each other’s pain acutely and do not flinch.

Y’all know you rock, right? Thank you!

Other thoughts: 
How art for breakfast goes well with coffee. While buzzing towards SFO to gather some precious cargo I get to listen to Ira Glass tell fascinating stories. Sisters are marching in the East and in the West on this day. Dreamers are dreaming of crumbling walls and I have a sledgehammer to spare...maybe two or three.

Citizens of Earth, all yawning or making love or zoning out in the morning meetings. Interconnected as we buckle under the weight of our intimacy with such unspeakable burdens. Nature is not as forgiving and will spit us out if we keep treating her like a whore.

An owl is hooting just outside this foreign house as the air shudders on to steal the chill away. Somewhere there is a cry no one hears or one missed train that changes a life. Weary eyes glisten with tears when that song comes on because she misses him so much, not realizing he only changed form.

A hopeful dog named after a survivor of astounding proportions rests his paw gently on my chest. Gazing into my eyes, “A walk and a treat would be very fine indeed!” I feel guilty he’ll be getting his shots this morning, so I slide my crumpled sweats back on after a mere 3 1/2 hours of shut eye and watch Augie shake his stubby tail.

It’s a good day to be in the here and now. There is overwhelming grief, yes. When it is much, in the darkness I question the relevance of my own heartbeat. The answer is always the same- in the relentless chaos and confusion every speck hosts too much love to resist. I can trace the constellations using only the freckles on your skin.

That song was in his list: 
https://open.spotify.com/…/121359911/playlist/4i1PVoY78cdw4…

Survival Techniques

Survival Techniques

Profoundly grateful for the support and kindness shown under the post about my kids. I rarely include home scenarios or get personal out of respect for their privacy, but this felt like a moment where exposure might promote understanding.

I’ll be writing more about that thread, (including your comments) because it showed who YOU are. I feel grateful to know each of you in any capacity.

We all have times of transition that become overwhelming. I am not always skillful with challenges, but I am direct and honest and able to find the humor pretty quickly.

With my brain condition, I’ve had to drop harsher critics and those who refuse to see that our situation is not the same as other families. Those who deny themselves real understanding of Parkinson’s but give it lip service...yeah, yeah you “knew a guy” or “your neighbor or your Uncle...” so you’ve got it all figured out and “why don’t I just do this or that and heal myself!”

The former acquaintances and friends who fail to discern the difference between a parkie brain and a relatively healthy brain have said and done things that made it so much worse. With friends like them, who needs enemies? It drained my time and energy, always trying to explain.

Yet here we all are! Welcome to messy humanity and this sometimes ridiculous but miraculous life!

I don’t have time to get beat up by casual observers when PD delivers enough of a beating... every day and every night.

Of course folks don’t have to read what I post, or my blog, or short stories, or any other writing, but the distinction is that my friends know the difference between a symptom of an involuntary neurologic condition or side effects of a medication and who I really am. Those who refuse this ultimate reality fall away. They made it into something it was not, got fed up (fair enough, it does suck), or they got scared.

Parkinson’s IS scary, but I’m still here doing my best with resources available, and living a vibrant active creative life, so I might help others do the same. I stick my neck out and go to bat FOR a community and cause bigger than myself.

It’s impossible for me to be “normal” and highly functioning in all ways. I haven’t followed dominant culture to begin with- so if that’s what you seek, you’ll be frustrated. Like anyone faced with challenges too big for their capacity, I never imagined I’d have to make some of these choices.

How do any of us know what we’d do, until we are in that situation ourselves?

For those who have seen the changes and still accepted me, and for new friends who have only known me as a PwP: I cherish our connection! Thank you.

This is not for the faint of heart. If you are in my circles, you have courage AND compassion. The jagged parts of life are made smoother, and even survivable, because of you.

White Wedding

White Wedding

Is it a nice day for a wedding? Reflections on race for Black History Month. 

Am I In Your Way?

Am I In Your Way?

Since your diagnosis, what do people do or say that bugs you?

Mine: 
“Could you please hurry up or could you just get out-of-the-way?”

Like someone who begins knocking on the bathroom door or pulling at the handle the second you get in there, and you know that it’s going to take you a little bit longer so you rush, which makes you start shaking badly! It’s a small miracle you did not pee your pants.

Or

PwP can be unpredictably off-balance, and sometimes we are just off in general. Our friends and family MUST understand this is beyond our control. At times my meds aren’t working, or it’s particularly stressful, so the motor and non-motor symptoms get spiked.

It’s easy to be distracted or overstimulated, and understandably, anxiety is part of this gig. Appearing kinda out of it is a common symptom AND side effect in most neurologic diseases. Start with insomnia and work out from there. It’s a small miracle when a PwP can function well. I certainly like to make the most of “on times”!

Question: Why do we have to deal with the double insult of ignorance about our condition AND projection after we are BRAVE enough to put ourselves out there?

Answer: We don’t.

Pro Tip: Walk your crooked shaky self right away from ignorance and shaming and projection. Enjoy the time you have earned to enjoy yourself free from prejudice. They don’t know any better, but it’s not necessarily your job to educate Joe Ignorance just because of your diagnosis. Don’t bother, just go find your own way to shake it off.

You are up and moving and your shoes are tied, so you feel pretty OK...

Go now and be that small miracle!

Darkness

Darkness

Facts about the iceberg effect of depression and a notice for all (not just Parkies):

If you are living with a chronic condition or a disease, please remain hyper-vigilant about depression. Don’t try to be brave or too proud, because no one can handle all this in isolation.

Depression kills people (and relationships). It masquerades as other things, and left unchecked it can gather dangerous momentum.

There is no shame in admitting you need help to re-balance chemistry that you cannot control. You know when things don’t feel right...and there are options for help, but no one can read your mind. If you feel depressed and overwhelmed, please get local support ASAP. Talk to your doctor and inform them of your struggle.

Depression is a liar. It wants to get you alone and drag you under. There is help available in your community.

Not everyone can identify it or understand how this experience affects everything. It is imperative all who endure progressive incurable conditions and chronic pain link up with experienced medical professionals and stay connected over time with trusted friends and family.

Most of all, learn to identify the signs and symptoms before it gets life-threatening.

#neveralone #depression #connection

A lesson in futility

A lesson in futility

Note to self and others:

“Yes, this situation is hard on everyone and can be confusing, but you mustn’t bother with willful ignorance. Your world is different now and not everyone is going to get that.

If there are people in your life who insist upon taking symptoms and side effects of an incurable progressive disease personally, demanding you do things their way...cut em loose.

It sounds harsh, but this scenario can make a brutal situation even worse. In terms of voluntary relationships, like choosing a friend or lover, you do have a choice.

I kept thinking that if I found the right words or tried harder to meet increasing demands, it would heal the situation. The burden of proving that the disease, and not poor attitude, was the problem became exhausting. I was in need of support, but instead resources were depleted even faster as I gave everything to reassure, to help someone else see.

A lesson in futility.

The impossible situations we endure for “love” or “friendship” will force the progression of this disease. Often they aren’t helpful or even healthy. I am here to remind you that you must stop taking superflous hits if you intend to survive.

Our intimates may not have the capacity to understand that life-threatening or life-altering illnesses are not about them. We failed to show up as they expect of relatively normal and healthy people, so they get frustrated and upset with us. Rightly so, but there is a wealth of published medical material to depersonalize and clear this confusion.

Maybe they don’t have access to media or the internet?

Some friends may fill in confusing gaps that they don’t understand with information that does not pertain to you, or your situation. Their fear leaks onto you, and vice versa. When you stop participating in this ridiculous cycle you’ll have more energy for what matters.

This is true in every situation, not just when disease is beating the crap out of a friend or partner. All PwP can do is try to manage symptoms better and continue to communicate clearly.

Unfortunately, we are also forced to suffer random fools who do not even know us tossing opinions like sharp stones into our increasingly difficult fight for survival- one they just do not understand.

These same folks have big ideas about how they would handle your life so much better than you, if they were dx’d with an incurable progressive brain disease. Most people don’t even know they’re looking at a miracle.

I am grateful to be alive and thriving much as possible under challenging circumstances and choose to spend time with people who get this.

My unsolicited advice: 
Stay in the light of love and let go of the rest.”

 

Of note: Thank you to Adyashanti, one of my teachers. His words have  changed the way I respond to life's challenges. 

Communication is the answer

Communication is the answer

Do those in your immediate circle (family & friends) understand the challenges you face with Parkinson’s? If not, what might a creative writer express that could help relatively healthy folks relate to us better?

I’m not talking about sharing links to medical information, I’m asking how things feel on the inside, regardless of how they might appear. Not every Parkie presents the same way. One hour I feel great and move well, but a few hours later you may find me shaky, forced to cancel exquisite plans.

Repeatedly, we see messages in our community that express a deep despair and much suffering over misunderstandings, abandonment, and behavior that confirms a lack of education about Parkinson’s, anxiety and depression. This additional anguish is unnecessary. We all have enough to handle! It’s a challenge though, depending upon the age and level of awareness in our circles.

Prior to and even during the first 4 years of my dx, I was not aware of this iceberg effect, so how can I expect anyone around me to just “get it?”

My goal is to find language that gets as close possible to the root of cruelty of disease. Bleeding onto the page as we have been informed to do by Hemingway is not something I expect to master in this lifetime, but I’m going to give expression a shot...for all of us.

Have you ever read a story or a book that you felt in your own body as you were one of the characters?

I’d be grateful if you might share YOUR THOUGHTS on what part of the Parkinson’s or dystonia or Ataxia or MS (any neuro disorder) experience you feel is the most misunderstood?

If people who love us and who mean well are missing the mark, then communication is the answer.

Here, an image of my youngest, who was “So over talking about anything, Mom,” on this day. She just wants to be a teenager with a consistent place to land, but Parkinson’s continues to be an unpredictable drag...hard on all of us.