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Parkinsons

Reflections & Communication

Reflections & Communication

This one is for People with Parkinson's and their friends, families, partners...

These reflections are not just for those in the presence of chronic pain or neurological conditions.

If you love or care about a PwP, it helps to have the following tools coupled with awareness:

1. Patience. Give each other a break.

2. Awareness of specific challenges that may not be visible. Off times may include freezing or shaking or extreme exhaustion come up at inopportune moments. Unless you strive to stay open-minded and in the moment, unrealistic expectations will kill the relationship.

3. Flexibility (see #2).

4. Confidence and groundedness. Taking things personally serves no one and nothing with Parkinson's is personal. If you love and trust yourself, any additional challenges that come up in relationships will not get blown out of proportion.

5. Know the difference between a character flaw/difficult personality and the victim of a brain disease. You don't have to put up with martyrs or whiners or those unwilling to help themselves, but it's easier to discern and stay cool if you have the facts. Entering the world of a parkie, you may be surprised to find one of the strongest beings you'll ever know, but not necessarily in conventional ways. Parkinson's has a way of humbling it's victims that's actually quite beautiful.

6. Be curious. Tripping on uneducated and uninformed stories, making assumptions and being hyper-reactive are the fastest ways to lose a friend or lover (in general). If you have friends who are looking in from the outside and chiming in without a clear understanding of Parkinson's, at least take that into consideration when sharing details.

7. Humor.

8. A calm way of working things out whenever possible. Stress will bring on symptoms and cause confusion.

9. More humor.

If you HAVE Parkinson's, and you love or care about someone:

1. Communication skills. No one can read your mind - this includes your lover, besties, and blood relatives. What you are experiencing during off times or when the non-motor symptoms are kicking your a$$ demands your comprehension and clearest communication.

2. Compassion and patience for self, and at least an equal amount for them. It's not easy to be so close to this condition without having it, and your people have their challenges to contend with, simultaneously. Don't let PD become the elephant in the room or take up the whole room. Learn more about them. Listen and offer them the same consideration.

3. Extreme humility coupled with fierce confidence. If these qualities coexist, confidence cannot be confused with ego or bravado. Damn right you're strong...and so are those who love you!

4. Do the maintenance work. It sucks, and it takes a lot of energy, but you know you must do extra to thrive with this condition. I cannot stress exercise and dance and wild spontaneity enough.

5. Show gratitude for those who stick with you through the toughest parts, honoring and supporting your strength. They are golden. Let them know you appreciate them. You may find your inner circle gets smaller- but it will be quality and not quantity that matters on this journey. Remember the millions of others with your condition and lean on them.

6. Conversely, be wary of anyone who holds you to an unrealistic template, constantly expressing their disappointment in your incapabilities. If they're high strung and strict on timing, they'll be frustrated… and so will you. Always offer a window rather than an exact minute of arrival. People who are anxious and unsure of themselves tend to be incompatible with PwPs. Notice who I hang with...they are not unlike superheros and deadly good-looking too (insert cheeky grin here.)

7. Humor. If we can't make fun of ourselves, we're screwed. It's only life.

8. A keen awareness that love is bigger than you or any of your plans. Letting go and allowing whatever comes is a good way to roll. It's true that we are all having different experiences, but everyone needs love. Stop worrying that you will become a burden and enjoy this moment.

9. Your condition may be too much for some. Try not to take this personally, no matter how much it hurts.

10. Work work work....#nevergiveup #neveralone #yougotthis #kathleenkiddo#parkinsonsawareness

This video was taken yesterday morning, six months post-op shoulder surgery For a labrum repair and badly torn rotator cuff. My physical therapist hates me.

Pummeled by Parkinson's

Pummeled by Parkinson's

It’s after midnight. I remain heartbroken - by chronic pain, from witnessing the waves of inhumanity and indifference in our midst. I am barely keeping it together, but I have good mascara.

Observers have no idea what they are looking at, so unfortunately, movement disorders get judged on appearances. If I failed to communicate the brutality of this condition, or my relative handicaps, it’s not anyone else’s fault. I’m still learning too. 

It’s tough to find the words to convey how viciously symptoms and side effects consume most of my resources. In the middle of most days, I fantasize... 
about sleep. 

This disease is sneaky, with unexpected ferocity, it delivers relentless blows. Anyone who wished me harm, can call it even. 

Thank you to all who share and read, and take the time. I’m not able to follow normal protocol, because Parkies don’t have the luxury of normalcy. 

Please know I’m not interested in sympathy, nor is this an SOS. 

I’m no damsel in distress, and I ask that you hear I have no interest in sympathy, though I’ve ever been so frail. 

No one can “save” anyone, this is Parkinson’s. I am hunted most of the time, and cherish hours of relief. Oh friends, Parkinson’s is rough, but your presence helps more than you know! 

https://open.spotify.com/track/2Bcu8cmU7qYu3qXLowHQie…

Shut up & dance

Shut up & dance

My body is becoming a cage.

When your timeline has been shortened by a progressive and degenerative brain disease, you might surprise yourself. EVERYTHING changes, and almost EVERYONE chimes in to offer opinion on how to handle such things… from a comfortable distance.

Let’s switch bodies for a few weeks. Let me know how that goes! I’ll learn something about you and you can hang out with Parkinson’s. I’m not unhappy, I’m EXHAUSTED. At present, I also feel kinda judged. Since it’s none of my business what others think of me, I’ll continue to enjoy all the things while I still can. Every dance. Every sandwich. Every simple joy. I’m humbled just to be alive and whenever possible, thriving.

This kind of diagnosis offers the perspective of knowing I’ll lose everything. My voice, normal movement, including the ability to walk and get around, dance, digestion, sleep, and eventually, it will take my breath away too. Damn right I’m going to dance like a maniac and grab that microphone and act a fool sometimes. The more I move and sing the longer I might have the ability to walk and talk for as long as possible. I’d like to hold my grand kids someday.

All these things I used to take for granted.

The fact that I’m being dismantled in ways that you cannot see and fail to comprehend is not an invitation to attack first and ask questions later. I’m not worried, because eventually we all end up in the same place and none of this is under our control.

Mind your own gap. I’ll fly my flappy freak flag in your face if you refuse to acknowledge the reality that others might be having a life experience different than your own. I’m so tired of sanctimonious fools telling everyone else how to be and lobbing bullets from behind false interpretations of scripture- it’s unproductive.

If being basic in normal and believing the illusion of control the best you can do in this life, my sympathies are with you. I’m just trying to make the most of a pretty crappy situation and find dualistic thinking harmful.

I’m not normal or easy to live with, but I also don’t need to travel with a posse nodding blindly in agreement or collect party buddies to escape my loneliness. I have bigger problems that opinions and popularity is nothing more than an albatross hanging from the necks of the most insecure among us.

There’s just not enough time for energy-suckers- not when you get a diagnosis like ours, and not in perfect health.

I’m not afraid. Most of my worst nightmares have already come true. Being somewhat handicapped has carved me into a compassionate type of warrior. To survive this extra hit I had to die and get knocked down, repeatedly.

“And still I rise!” 
-Maya Angelou

Confusing kindness with weakness is always a mistake. Most powerful people I have ever been around practice compassion and our deeply kind, in spite of or because of the level of suffering they’ve endured. Those who love enough to make this life easier and not more difficult I am honored to count as my best friends. All this talk-talk-talking can be such a drain.

Now shut up and dance. 😎

With gratitude and love, 
HK

Now if you’ll excuse me while I get my bat suit on to save the world!

The Off Times

The Off Times

If you see PwP’s (People with Parkinson’s) posting pictures of working out or going on about their glorious moments of crossing finish lines or other proud moments, it’s not what you may think.

To the inexperienced or unobservant “advocacy” may appear attention-seeking or self-involved- even narcissistic. People with a lot of ego tend to get involved in and upset with how others are choosing to express this situation. The “situation” is a moving target that not rocket science but will eventually include brain surgery (DBS). This is unfamiliar territory and almost impossible to describe… but for informational purposes, I’m willing to try. Just consider discarding the “normal” template you use to understand where someone is coming from.

Expecting anyone who has been blindsided with a progressive degenerative incurable disease to carry on as if nothing has changed is unrealistic. That would be akin to expecting a person with Alzheimer’s or to recall details in the immediate. Though we each have our specific challenges, Parkinsons’s is a consistent avalanche that sometimes moves uphill, or sideways. There is no escape.

This does not absolve us from the regular responsibilities of life, it’s just that we are not living the same way we did prior to dx. Everything changes- from friend groups, to lifestyle, to our philosophy of what it means to be human.

Imagine setting a gorgeous candlelit table, With your finest crystal and ambiance in spades. All your favorite friends and family are there enjoying a perfect meal. The music and vibe is just right. Without warning, an unexpected guest enters to shake the tablecloth out, and as the wine and glassware crashes and shatters, the party is not the same. Some of your people stay to help you clean up even though that rude guest stuck around to cause more trouble.

Whether it was a party or a struggle, some of them could still distinguish and appreciate you (the person) from this increasingly hellish scene (the disease) that you did not ask for.

These are your friends. Now you know.

Many of us post these pictures and videos AS A REMINDER, to ourselves and to our community that we can get through the worst of this by knowing impermanence. Every day there is some kind of challenge and we’ve all been in that dark isolated place, where we don’t think we can do this anymore. Don’t believe that story!

By its nature chronic pain is distracting and we tend to become hyper-focused on our health. That does not mean that we are self-absorbed, but that we’re fighting invisible battles and enduring extra challenges that cannot be easily seen or understood. There is little logic to the off times in Parkinson’s- and this can be difficult for partners and intimates who might be insecure or confuse the disease with their person.

If you have Parkinson’s, please hear this:
PARKINSON’S DOES NOT DEFINE US. People may not realize in your fluid moments that they are looking at a small miracle.

The management of chronic disease demands hyper-vigilance and an unbreakable spirit. Though we have been humbled by the unpredictability of our condition, PwP are among the grittiest and most inspiring characters I’ve ever known.

So, please, show us your victories large and small. Be the light...and in times that is not possible, you may use my light as a guide through your challenges. We need one another and remain impossibly human. It is only by trial and error we find our way. After we find our way, remember that we always get lost again, and again. Expect this.

We’re all doing what we can. #neveralone #kathleenkiddo As an example, this was texted with my right thumb on a tiny glowing screen after hearing sharp criticism towards one of my colleagues. It came from someone who has no idea what a chronic incurable disease might feel like. And who knows maybe we’ll all get a turn to walk in each other’s shoes. #compassion#tonglen #humanity

My Dad had such a rich and steady voice, and I can still hear him now:

“This little light of mine, I’m gonna let it shine...”

🍀

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.

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?

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.

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.

No one should suffer alone

No one should suffer alone

Depression is made worse by isolation. Find seasoned professionals and fierce bears who will support you in this journey.