Advocate

Advocate

Advocate.

I have no particular authority, I'm just offering whatever I can to facilitate progress. Recognizing I'm just one voice, in a peaceful international army of thousands, I suffer no inflated sense of self-importance and require no personal attention.

I'm simply passionate about this work. It's not enough to repeat what's been done. I'm not competitive, I'm collaborative and more interested in learning. I have an incurable brain disease that almost requires a PhD to understand, and know I must stay active in all realms to thrive. If you're living with such challenges, you know the drill.

Managing Parkinson's takes a lot out of you!

My intention is to help change the face of Parkinson's. Inspired by Anders M. Leines and his _This is Parkinsons_ project, I'm focused on what I am able to contribute to our community. I'm not afraid to step into the spotlight, but for brief periods, and ONLY if it promotes education and progress.

Walking in the footsteps of giant activists, I've been basking in time with our PD family. It's not easy to travel- though it sounds glamorous, for PwP it can be rough. I've been invited into homes and lives as if I were family.

Thank you Andy Butler, for making this trip happen, and for all you do. Every day with PD is challenging enough- so the capacity you've all shown in this success of Parkinson's Eve is astounding!

Omotola Thomas, Genna Douglas, Gaynor Edwards, Robin Buttery, and all who so graciously gave me tours or tried teaching me how not to be a clumsy American (good luck)- Thank You!

I'm fortunate to have some time with a sagacious and brilliant Professor, as we film candid talks on what's next in advocacy- as in how to avoid our own mythology and ego's hype in order to work toward a useful legacy within our international community.

Burnout rate: HIGH. Activism and advocacy is time consuming and all-encompassing. Our families are forced to share our scarce time, and may feel they aren't prioritized. In our fierce intentions to enact change, we've been reflecting upon how this affects everyone around us.

Parkinson's isn't easy to be around, nor are it's cruel effects predictable. Thank you to all who love and support a PwP! I'm so grateful for all the support that has made this trip happen.

Home soon. See you in Kyoto, and likely Grand Rapids too! 🌷

"You don't look sick."

"You don't look sick."

"I just danced with you, and you seemed totally fine...?"

"But weren't you OK just a couple minutes ago?"

Yes to all the things people say, but these opinions and observations are missing THE FACTS of this disease.*

YOPD (Young onset Parkinson's) is a most unpredictable and confounding condition. We take nothing for granted, especially not the precious times when the medication works, when we get to enjoy "normal" levels of activity. (This varies for each PwP, and has a lot to do with treatments and timing.)

If you happen to notice someone with Parkinson's get quite big, seeming a bit wild, and then get really small again in the same day, it's because we are anticipating the Cinderella thing.

Like Cinderella, our time to enjoy public spaces is limited. We know that it is pain and locking up and falling and dyskinesias that come for us - not the glittering smooth chariot. Our time of mobility and simple fluidity is up at Parkinson's whim. We'll likely limp or crawl home from the gala where things felt sparkly, and we could pretend neurologic disease is not a thing, for a few glorious hours.

A brilliant ad campaign from the UK. We all take turns being models for Parkinson's… and none of us wanted this, so thanks to everyone who steps forward to tell it like it is. When we share our stories, we humanize a disease that most don't care about, unless it affects them directly.

https://www.michaeljfox.org/mobile/topic.php…

https://metro.co.uk/tag/you-dont-look-sick/

Miracle Cure

Miracle Cure

"Miracle Cure!"

Progressive degenerative incurable disease- that's what I was told. It took me a year to digest this information.

Do I believe in miracles? Sure, but who cares what I believe. The only way to approach medical news is through careful consideration of facts, scientific research, and by following the money.

It would help to ask, "Is this really true?" Or "Do I know this for sure?" Before promoting the pretty sparkly fantasy of "healthy ever after."

I see the benefit of looking on the bright side, actively participating in research and fundraising, and even holding hope for a treatment to slow or stop the nightmare of inevitable progression. That is all good stuff, but the stream of sponsored online sources of "medical news" has gotten increasingly murky.

It appears there's been a misunderstanding about how clinical testing and research actually works. You and I might not have the time or inclination to earn a degree in medical research, yet wonder how we can tell if an article is just clickbait.

A few questions to ask before promoting that glowing headline from some unknown online zine about a miracle cure. By the way, when is the last time you heard of or read that source of news?

Put hope aside for a few minutes, and ask questions that get right to the point.

1. Who published this information, and what company or entities sponsored them? Monetary gain is the clearest trail to follow.

2. Are there links and references to verified sources and current information?

3. Is the article well rounded or just one sided?

4. Has this drug or treatment been tested in the human population, and if so, which phase of trials has been reached?

5. Is this drug safe, affordable or even available?

6. Has anyone in our population tried this treatment with recognizable results, and are you certain they were not paid to advertise this product?

7. Since so many hacks insist upon using stock photos of Michael J Fox as the illustration accompanying their articles, why doesn't he have access to this treatment?

I don't mean to burst anyone's bubble or offer rebuke, but checking sources should preclude any celebration over a miracle cure.

Even after all the disappointment, I remain reasonably (hesitantly) hopeful about legit research and advancements, but the onslaught of articles with glowing headlines from questionable sources that drop in photos of Michael J Fox... just stop.

And to anyone promoting products that supposedly halt the progression of Parkinson's:
Show me the money or get off my lawn.

Yes, I just quoted Clint Eastwood in a rant about discernment. I'm tired of watching the vulnerable bite these hooks and place their hopes in the parade of snake oil.

Fortunately, most administrators of our support groups feel similarly, and remain vigilant while screening for imposters, but those of us desperate for a cure need our own firewall.

I'll gladly test any new products or procedures, with live footage if necessary, but can only offer honest results to readers. Friends and strangers alike have approached, asking me to promote their fabulous products. Unless I have a comfortable amount of experience with a product or procedure, and it has been proven to help Parkinson's, I can't help them.

Integrity matters.

It's plainly wrong to make money off sick people by promoting misinformation and fakse hope. If anything, we should be calling these opportunists out, instead of forwarding this endless stream of BS.

I've spent years researching sources and following the money for a living, and rely upon critical thinking skills to discern the practicality and legitimacy of _any_ information.

Unless a medical treatment has passed all phases of human testing, is available and has shown promising results in a large portion of our population, it may as well be clickbait, because it doesn't affect my quality of life.

In other news, racoons got into our kitchen and helped themselves to a variety of snacks, and the lovely cake my daughter just made. The cure for this is a new dog door.

My First Thoughts Upon Waking Up

My First Thoughts Upon Waking Up

My first thoughts upon waking are about my children. Are they happy? Are they feeling enough love? Then I consider all the people I love and the kind woman who called to let me know something I'd written helped her get through dark days.

My next thoughts: 
How can I best use the resources that I have today for the greater good? I owe a great debt, because I've been given a lot, and I'm still extremely capable as a creative.

Today is the day I'll tackle that list, submit the writing I promised, and send all these thank you cards. I dream my writing will finally be legible and polished, with language that reaches absolutely everyone.

Or...

Maybe today all I can manage is not falling down stairs while hoisting ridiculous amounts of laundry and boxes of books. Darn you, Marie Kondo...I prefer my walls lines with books!

I'll return 17 phone calls and catch up on bills and return hundreds (or thousands?) of emails, or not. I can always finish home projects later- the kid's bedrooms, kitchen cabinets, winter garden, that hole in the floor everyone trips on. A sense I've forgotten something important interrupts my calm.

Or...

I'll walk into Pleasant Hill and get some real coffee (Who bought this decaf? Are they insane?). My dog is looking out the widow holding a bright red leash in his mouth.

Managing expectations has been quite humbling with Parkinson's relentless hammering. Time is slipping away, but my feet suddenly decide walking is not a good idea. I limp away from the dog to find a comfortable spot to meditate and ruminate without coffee.

California is so lovely, even in the rain. I count my blessings, overflowing with gratitude for the small things. There is an ever-present feeling of sadness mixed with horror at my predicament too though.

Rarely do I lie down during daylight hours, though working with a serious sleep deficit makes me forgetful. I think of all the PwP pushing through work and family obligations and feel inspired by their stories. There are ninjas in our midst who, in spite of chronic pain and agony, push on through.

Even sleep can be precarious- during short naps I have vivid nightmares due to sleep paralysis. The meds I must take to remain mobile have side effects even during slumber, including a disturbing sense of being dragged off the bed and down the hallway by something I cannot see.

I am not afraid of monsters though, because the only real threat to me is me.

c. Photo is a still from filming with Anders M. Leines.

A Conversation With Parkinson's: Not flinching.

A Conversation With Parkinson's: Not flinching.

A Conversation With Parkinson's: Not flinching.

Me: Yes (to fun plans).

Parkinson's: Nope. Not today. Sucker.

Me: I'll overcompensate. Have faith. Please don't make today suck.

Parkinson's: It's so cute the way you shake your impotent fist at the sky. You think you're in control but you're just an ant under the shadow of my boot.

Me: I feel good right now. I'm going to RSVP yes and yes and yes!

Parkinson's: Is that wise? I was just taking a quick break to watch the game. Your next few days will be rough.

Me: Friends will understand if I can't make it.

Parkinson's: No one cares what your excuse is. You're screwed.

Me: Why me?

Parkinson's: Why not you?

Me: I'm stronger than you know, Goliath. I work out like an animal.

Parkinson's: So was Muhhamad Ali. 
By the way, if your identity is based on your physicality, prepare to get humbled (and humiliated).

Me: I'm one step ahead of you, for the kids. I have so much love.

Parkinson's: They'll feel my presence and you'll end up alone.

Me: I'll shield them. I can hide you.

Parkinson's: Most damage leaves no visible scar. I'm too complicated for them to understand. No one will be strong enough to handle this with you.

Me: I still believe in love, in it's myriad of forms.

Parkinson's: Fool. You'll die alone.

Me: The lionhearted will prove you wrong. I've been too close to death too many times to be afraid of you. I don't love because I fear loneliness, fool.

LOVE is all there is. It doesn't leave, it just changes form. 🙏🏼

Dear Lyft Corporate, Your driver was....

Dear Lyft Corporate, Your driver was....

Dear LYFT Corporate,

Your driver "Larry" was hired to get my daughter from home to school via her Lyft account at 7 AM this morning (see attachment 1 for Larry's info). I fancy the name Larry, but this guy made it really hard to like him.

This may not be of interest to you, but it's information you'll need to understand why I am not only asking for a refund, but considering closing my Lyft account (see attachment 2 for the details of my account with high ratings. I work in a service industry and offer only respect.)

Perhaps "Larry" had a rough morning, but picking my daughter up, then abruptly turning his truck around, announcing he "doesn't get paid to sit in traffic" and wasn't about to "get stuck in this traffic pattern" should not be an option for any driver who already accepted the fare and was already IN RTE.

By the time he turned around and brought her back to the pick up location, she was already panicking about the time. It was only as an afterthought "Larry" added that he wasn't going to drive her to school because she's "under 18 and you don't matter".

When my daughter pleaded with "Larry" to reconsider because her finals are this morning, she mentioned that her mother was not capable of driving and that she had no other options.

Your driver's response: "That's not my problem. You have to pay me before you get out."

I crawled down the stairs in time to see him skidding away from our front walkway. You might also remind "Larry" he should slow his truck down in a residential area. I was relieved that she wasn't in his car at this point, because that didn't even look safe.

Of course it's not your driver's "problem" that she needed to be at school early for finals, and I now regret counting on LYFT.

My family and friends use LYFT all the time, in part because I've been a vocal supporter of your business. I understand that you are considering handicapped transport. Since Parkinson's is a motor disorder, many of my readers are in need of your service. I'm happy to support this too, but not until you contact me about what was going on with your driver.

The reason I could not drive my daughter to finals is because I have Parkinson's and the medications that allow me to move with fluidity do not always work. That's something that I live with that fluctuates hour by hour, and I would appreciate it if your drivers did not punish my daughter for what is beyond her control. Being late to a final might also affect her grade.

If you don't transport minors you might want to inform hundreds of your drivers of this fact, because you took our payments. This morning, that was not the issue.

We relied upon LYFT, and as you'll see in our accounts, we've been considerate and generous customers. I'd like to speak with customer service in hopes of hearing some assurance this will never happen again.

Thank you in advance for your time and consideration.

Heather Kennedy

Parkinson's Advocate 
Kathleen Kiddo

cc: MJFF, Davis Phinney Foundation, WPC, Federal Disability Discrimination, APDA, CCDRL, et al.

Here is a picture of us from yesterday. Of course I would drive my young adult to school every morning if I could.

Puck Parkinson's

Puck Parkinson's

Oh hi there! Yes, I've been hearing everything you've been saying to anyone nodding in agreement. Your summary of my behavior has been logged in the department of STFU, so take a number and have a seat, because this is one LONG line!

Maybe you’ve me mistaken for someone else. I'm working on, not perfecting the art of forgiveness and, just like my health, tolerance wavers. Anyway, you seem to be lacking information and basic understanding about how not everyone is having the exact same experience. I’m hoping that if I dare repeat this last line enough times, it’ll get through to such “concerned parties” .

Since you've positioned yourself as an expert about how others should live with progressive incurable brain disease, and in case you missed it the first time, allow me flesh things out a bit more. Yes, this is directed at a handful of hypocritical folks from days past who’ve earned the title of Judas. Starts with a J… yeah, so…

Unless you're currently walking backwards in cold snow while tightly wrapped in a thick wet wool blanket that includes invisible butter knives aimed at your neck expressing disappointment or how you are handling the 25-30 pounds of water sloshing around in your backpack, walking backwards with shoes tied together while dodging large angry pandas tackling you (even though you have a full bladder, dry mouth and no voice), WHILE your dominant hand is tied behind your back after not sleeping for almost two weeks...

...refrain from vocalizing judgements, assumptions, expectations, asserting a need to be in control, offering unsolicited advice, and engaging in the habit of pathologizing anyone you presume to know as they try their best to survive a progressive and degenerative disease.

Please.

Yeah, you once had a neighbor with Parkinson’s, you mentioned that, and your vast spiritual workshopping while presenting your credentials. You missed a few medical facts, but don’t take my word for it. Educate yourself.

We each carry whatever pain we must carry in our time here, in addition to the range of "normal" responsibilities and challenges, and we do so mostly alone. No one else can hoist and handle our burdens, nor would we want that. Some make an overwhelming condition better by simply allowing the diagnosed some space and TIME to move from one place to the next...
then we must tolerate the egoic and willfully ignorant folks who demand everyone else meet their particular and relatively healthy/normal expectations.

Be graceful and always smile as you listen to how Inconvenienced they were by your failure to comply.

Going forward, we have no choice but believe we're each striving to do our best with whatever resources we have available in this moment. Observing and judging someone you don't know in one public scenario does not make you an expert of anything nor an honorary movement specialist or neurologist, and your pity is also misguided.

This has been brought to you by a backwards Irish salute and the sound of my indifference about what you think. Thanks for a fun time, and don't forget to tip your bartenders!

Snarky Friday starts now. Got any gripes about how you've been treated during off times? This is your chance to let em know that at the department of STFU, we take unsolicited feedback very seriously.

Supplementing

Supplementing

While perusing threads in our Parkinson's support groups, I'm increasingly confused. Maybe you can help me out?

It was suggested this monster of a disease could be contained with DoTerra Oils, special teas or supplements. At the risk of sounding cynical and possibly suspicious, I've tried EVERYTHING and simply do not believe these impassioned proclamations. That doesn’t mean I think anyone is lying, but you can’t heal PD with spit and Vitamin D with peppermint oil. Sounds like some folks are promoting the ideas of halting the progression of Parkinson's using baking soda, vitamin C, extra hydration and a rubber band (MacGyver?) SO, the equivalent of holding an umbrella in a nuclear holocaust.

Forgive me for sounding frustrated. Indeed I am.

Perhaps we aren't talking about the same condition, as I've been using the same oils for years... to relax, soothe light ailments and make my home and cars smell like an ashram. Om shanti, all you self-professed goddesses and alchemists! But as a "cure"? Do we need a disclaimer: WHAT ARE YOU SELLING? Please refrain from singing the praises of any specific product(s) here, unless you can offer confirmed and unbiased scientific information.

Of course I still believe in magic and have an infinite and fierce faith, I just don't want to be teased by glittering cures that end up being time-consuming and extremely expensive.

At first it appeared that someone was joining support groups to push product, but in the interest of a cohesive community and with the assumption of transparency, I remain sincerely curious about exactly how topical oils (however pure or Mormon) might treat or prevent the progression of a neurologic disease. I never finished my medical degree and remain grossly unqualified to propose a clinical trial on what works by the numbers.

When do you suppose Parkinson's will be divided into more distinct subcategories? 
And
How is it possible to function without medication or DBS for so long after dx?

In addition to working out like an animal, but not quite as hard as our Ninja Warriors, I've tried everything (diet, cannabis, alternative healers, every known therapy, shaman...). Many treatments balance the system and bring relief, but nothing has slowed the progression of this beast with exception of constant physical activity and an avalanche of compassion.

I've spent obnoxious amounts of money on alternative treatments and products, but I can no longer afford the randomness. I'm tired of chasing the latest supplements and devices and modalities. This has become a Hobson's choice.

It would be an understatement to call this condition we are subjected to cruel. The fact that it isn't always obvious I sound like a blessing but causes miscommunication and confusion with people who do not understand it's furious death grip. For non-parkie judge and jury: If I'm standing upright, smiling, breathing and my shoes match, leave me the f alone, OK?

The uneducated and unaware non-PD judges who choose to remain blissfully unaware of how much strength it took for me to get here have been unkind. Ignoring medical information and the fact that not everyone is having the same experience gets us nowhere, and I am always on the hunt for more information. Hence my question on grouping PD a bit differently.

I've only known a few cases of misdiagnosis and this is not questioning anyone's experience, it's just that without consistent medication, I simply cannot move. Most PwP seem to fall into this category. When I go dancing I take a little extra and often pay the price, but it's worth 4-5 glorious hours of relative fluidity.

It's easy to relate emotionally to our international community, as chronic pain dismantles even the brightest and disciplined stars among us. While listening to others enduring the isolation of this condition, I realized it's the non-motor symptoms that are most relatable. We all seem a bit traumatized by our own unpredictable nightmares, and we take turns carrying one another.

A bit awkwardly perhaps, as we are in many ways an International family of handicapped (but don't call us that!) seekers. No matter how depleted and despondent we become, our dogged quest for better treatment continues.

In recent history, I've barely been able to function due to extreme temps, grief, lack of motion, shoulder surgery... everything seems to affect Parkinson's. Without medication, my body would be a cage. How do you manage PD?

https://youtu.be/Qtb11P1FWnc

Your Brave Death

Your Brave Death

Your Brave Death

From what I've gathered, one of the greatest fears for people struggling with neurological disease is a universal kind of fear.

To be misunderstood, abandoned and without a loving partner or caregiver or solid friends.

In short: Dying alone.

Being with my father as he languished in a dank hospital room was devastating. I've never felt more powerless nor more raw and can recall every word each of you spoke or texted during that time. What an incredibly kind and loving circle of friends my family has!

God Bless Nurses, Hospice, and my Fearless Besties!

Most of us have no idea what to do in these circumstances...by why? It's an inevitability.

The line at Caywood's Funeral Home was over 2 1/2 hours long. Jody, my friend since Kindergarten, stood by helping for every minute of it and did not rest that night until I was asleep. I was humbled when several acquaintances showed up in their hospital or welding or cooking uniforms, apologizing for their appearance. They thought so much of my father that they came all that way to pay respects on their break!

Every bit of my scarce and jaggy energy was focused on Dad's comfort in the final weeks. Supporting Mom is a family affair as she says goodbye to her only life partner and best friend.

We all forgot to eat or sleep, didn't know what day it was or what deadlines we'd missed, overdrew accounts, dropped communications, and lost our cool in turns. If I had matching shoes on it was by the Grace of God alone. Everything in the material world dropped away.

In survival mode and being so intimate with death I wasn't confident my body would hold up. Thanks to Sinemet, Comtan, Azilect, Neupro patches, etc... I've always felt ambivalent and suspicious of drug companies and medications but these helped me stay moving in a critical time.

Parkinson's symptoms spike from distress, which is why those who take PD off times so personally or unconsciously add difficulties are no longer in my life. Bless their hearts! Never have I seen the intentions of fellow human beings and their habitual patterns more clearly than now.

Death is the great equalizer and is forgiven in the end, but I want to clear any residual resentments now, because I've got bigger work to do. I've answered a call that has nothing to do with reputationn or personal issues. I'm not afraid of exposure or failure, I'm afraid of running out of time.

Years ago, a southern girl told me how she returned to her hometown to help her mother die. They hadn't spoken and she was shunned for her sexual identity. I couldn't comprehend how powerful and healing this must have been in her situation, until now.

Even if everything is agreeable, death shakes out all the dark places we don't want to experience. Masks disintegrate and ego takes a back seat as you drop to your knees to beg for small mercies.

Nothing about dying is comfortable or easy (or endurable), without help. It was the selfless thoughtful angels who offeredsoup and just showed up without any fanfare or need for acknowledgment I'm forever indebted to. (FWIW, "soup" means any form of support...even a hug or a check in. It is never about the details, it's in the offering.)

You WILL be turned inside out and there's nothing you can do about it. Stay humble and grateful and as holy as possible, then put one foot in front of the other and breathe.

I have tremendous respect for all who endure extended illnesses with quiet grace and consistent compassion. Everyone has a different relationship to death, and in this time there should be no judgment, since deepening grief temporarily dements anyone who loves.

Margie Rodgers, you've taught me how to stay present under duress. I was ranting about pain killers and Kevorkian and doctors who never bothered to come around when you lifted me. To face the ugly physical deterioration of my hero while honoring his journey beneath the surface has broken me open.

The fact that we treat pets with more mercy in their dying hours remains disturbing, so a plan is helpful.

What are YOUR wishes for the end of YOUR life?

Any idea who might stick around and, if necessary, go through the toughest part with you?

These questions may bring up wounds or trust issues, but they require answers. Party buddies and cheap love and the ones who say they love but don't know how are common, and kind of sad. I feel for anyone who misses out on the spiritual and healing possibilities in these times.

Who are you sure can you count on, and who can absolutely count on you?

Some may think of dying as a topic to avoid, but we should be talking about it a lot more. The last thing I want to do is wait and not have a plan, leaving my loved ones without any direction.

If you've legalized healthcare paperwork, such as DNR forms, etc. what other documents and notes for family would you recommend?

Please leave any thoughts or links or books you find helpful below. Thank you. Deep bows to the true masters in this arena.

The Invisible Woman

The Invisible Woman

A figure from the corner of the lot was moving slowly in that particular shuffle that is undeniably Parkinson’s. I joined her to walk the distance to the entrance of our YMCA. She had the frozen features, was entirely stiff and not swinging her arms at all. If my eye were untrained, she’d appear inebriated or as the victim of a stroke perhaps, as her balance and speech were also off. This 82 year old woman always arrived and worked out and left alone, but she was in tremendous shape, and after she mentioned she has Parkinson’s I couldn’t help it...

“But you’re so young! I’d never have known!”

“I get that a lot. Are you on medication?”

“Oh no, my doctor at Kaiser said they have awful side effects.”

I paused here, incredulous and slightly annoyed with her PCP (not a movement specialist) this severely crippled state was apparently one of her best days.

“Would you let me show you the patch I’m wearing and talk to you a little bit about carbo levodopa or other options sometime?”

“Oh I would really like that because some days I can’t get out of bed and just stay home to read, but nothing hurts and I’m feeling fine, just fine. I usually just use a walker or my chair.”

“Do you ever feel depressed?”

“No, that’s ridiculous!”

It is my unscientific observation that older generations lived more in-service and complaining was off limits, but not every PwP feels depression or even heightened anxiety. This is one tricky and confusing condition! I cannot stress how important it is to find the right team of doctors. Yes, a team- one that explores alternative methods of healing and balancing. I try just about everything to manage this beast- for me and for everyone around me feeling it’s residual effects.

As any PwP can attest, diet and exercise remain the best medicine. See #rocksteadyboxing or dance or meditation as a start. You can do more than you think.

As she hobbled up the stairs shaking, the dainty octogenarian paused to mention that she didn’t need any help (shocker). It’s highly unlikely I’ll live as long, but my intention is to live well and with intensity and highest intention, because all we have is right now. No one can do this alone. Those bi-yearly 15 minute doctors appointments only help so much. The information from support groups and bloggers and organizations dedicated to raising awareness help us live better, and with less terror.

Stay active- in community and with your body. The more you can move and connect, the easier an incurable, degenerative and progressive brain disease is to manage.

Inspired by the lovely 82 year old at my YMCA.

#neveralone #kathleenkiddo #nevergiveup #parkinsonsawareness #PwP#parkinsons

The Human Heart

The Human Heart


The Human Heart

I long to put my arms around the world, but my arms are so small. There is too much suffering to hold.

I cried myself to sleep last night, and the night before too, because I can feel your pain so acutely, as if it were my own. The cold was so relentless that I thought I might die before the sun came up.

This endless suffering...
Is it yours, or is it ours?

I welcome the overwhelming pain of being alive. I too am afraid, but my arms are strong enough. Along with intense joy, and the merciful pause between each miraculous breath. Pain will not kill us, unless we repeatedly deny it.

Bring all your wounds and deep darks into that spaciousness. Drag it all into the light! I see you. I hear you. The child within is tugging at our shirts, deserving of our curious attention.

What else can I do, but listen to your telltale heart, and love anyway? All of you, and all of me, not just the pretty or pleasant parts. Not only what we choose to share with the rest of the world.

It has been said that practicing mindfulness will make everything hurt more, but matter less. I have no answers. This heart has no interest in editing or reframing or justifying. I’m too raw under the microscope of truth, deeply imperfect, and only want to love better.

Lub dub. 
Human. 
Lub dub. 
Human.

The heart remembers, as I remember you. Let’s reside in this place. An invitation:

“Love they neighbor as thyself.”

I accepted this invitation a long time ago, forgetting that first I must love myself. It has been here all along- this infinite and holy stream of love that doesn’t care what stories we tell ourselves about who we are, or what we deserve. Can you put your hand on your own tender heart and feel this?

Our collective heartbeat goes lub dub. This is the sound of love. This is us.

-HK

With gratitude for our Loveland group, and for the generosity of Matt Licata and Jeff Foster. Alchemy is not comfortable...not at all, but it is necessary.

 Touching on the trauma connection

Touching on the trauma connection

This article isn’t specific to neurologic disease, but a more universal human experience.

I’ve felt the overwhelming reverberations of trauma. In the aftermath of such unfortunate events, trauma can linger in the body, draining vitality as it erodes formerly healthy nervous systems.

It’s no stretch to consider trauma one of three main culprits of YOPD. For a plethora of reasons, I cannot and will not speak for all PwP, but my early diagnosis of Parkinson’s is less of a mystery as genetic predispositions are revealed.

It’s no mistake my first observable symptoms showed up during the most stressful time in my life. What occurred in that time, and subsequent years was a nightmare I did not know a human being could survive without being permanently broken, and thus crippled.

I did break. Completely. It was indeed a cumulative effect, and irreversible.

There are clichés, such as a “broken” heart, that contain more truth than most of us realize or want to admit. We consider such things in our minds (memory)to be voluntary, but there is much more to it than that.

Untreated trauma eventually kills people. It will ravage and terrorize, until you submit or explode. It can be mistaken for a weakness, a poor attitude, just or oddly rude and inappropriate behavior by uneducated or inexperienced observers.

By our own ignorance or unconsciousness, a common response is to pour gasoline on this kind of fire.

Hey there, got a light?

You know those classic movie renditions of trauma or PTSD containing flashbacks of the worst moments at incredibly inconvenient times? The feedback loop is jammed, and the victim is forced to relive the trauma repeatedly. Next up, anxiety.

This is not just in your head. Your experience isn’t even unique, it’s human.

https://upliftconnect.com/stress-its-not-in-your-head-its…/…

Rhetorical Questions

Rhetorical Questions


I ask plenty of rhetorical questions just to make a point, so you may choose to answer these privately or publicly, and I hope you share some of these with your friends and family.

Put your chin straps on, here we go! I’ve been listening to you in private, in support groups, and read everything I can get my hands on.

“HOUSTON, we have a problem ...”

...with communication!

Let’s begin:

Have Parkinson’s medications changed your personality, and how?

How often and to what degree do you suffer depression and/or anxiety? Do you know exactly how depression presents in your daily life?

If you have DBS, and are off the usual PD medications, do you feel more balanced and in control emotionally? Do you feel more “yourself”?

If you’ve had an adverse reaction to a drug, how long did it take until your chemistry somewhat evened out again?

Has anyone close to you commented on changes observed during shifts in medication, or when changes in medication are necessary?

If you refuse PD meds, why?

Are you ashamed of being emotional or irrational during off times, and do you try to hide them, or do you give yourself a break?

Do you have access to a neuropsychologist? If so, how are they helpful?

Does your movement specialist and or a neurologist inform you in detail about what to look out for?

Have you been in a relationship with anyone who either refuses to acknowledge or mocks your challenges?

Are you able to communicate clearly with loved ones, so they can try to understand what you’re experiencing? Because this disease affects anyone within close range, it’s hosts easily become potential victims of persecution and undeservedly harsh judgments. Also, intimates absolutely need to know the difference between choice and symptom.

These questions are part of a larger body of work. Feel free to pass them on for the sake of information and education. It’s not always comfortable to discuss our emotional and mental landscape, but I believe it is more important then the more obvious disabilities over time.

Denying or refusing to reflect upon how Parkinson’s has changed us, or how it affects others will ensure miscommunication and possible resentment. Ask caregivers and intimates for their observations.

Without proper information, there is only more suffering, and that’s getting old.

Unedited

Unedited


Unedited. No time to ponder or fuss. An intro:

Do you really want to know what “this” feels like? You don’t have time for this mess!

Neither did I.

This cruel and univited guest is trampling the garden we’ve been cultivating together. The one I’ve been taking care of my whole life, the one I counted on for sustinence, and survival. Parkinson’s shows up without warning at inconvenient times, and stays too long, leaving suffering and stuggle in place of the skill and ease I used to take for granted.

Once, I wanted to be The Greatest. I thought we’d always be together… because LOVE… but naw…

You don’t know, until you know. Then you can’t unknow. It’s a good thing I’m only visiting the material world, with my body as temporary housing for infinite soul, because if this were progressing through infinity, hell might have a new meaning.

Often, I want to leave my body. Wouldn’t you?

Dystonia feels like sleep paralysis, with appendages curling up painfully. This is the only time I find myself relating to Roy Batty (Rutger Hauer) in Blade Runner. The rooftop scene, where he he puts a nail through his hand just to keep it open a bit longer...just to stay alive.

Hurry up now, you’re making everyone late, they’re pounding on the bathroom door and our ride is about to leave!

But... “I want more life…”

Dyskinesia feels like a puppet master is yanking me around in rocking, circular movements and there’s nothing I can do to stop it. It usually signals an abundance of meds, which causes my body to lurch about in manic jerking movements.

My dog thinks I’m playing, until the tears come. I don’t cry for me, I cry because it hurts people I love. Parkinson’s affects it’s host and impacts everyone in close range.

The ones who played at loving just leave. They will miss the richest part of this journey, and that is their choice. Either because they don’t want to see this, or because they don’t agree with how I’m managing the subtler phsychological symptoms and side effects. Strangers talk about differences instead of similarities, having no concept of what they are observing. No one can begin to see or understand, unless we find a way to communicate and educate.

Lord, make me a conduit. I promise to keep the channel clear and honest, even when it’s most uncomfortable.

Both symptoms I mention are painful and inconvenient, and though there are dozens more, I’ll spare you. It is the imposing mountain at my gate that concerns me. We have no time left for anything not rooted in truth. The curtain is being pulled back and we are forced to reckon with ALL that exists in humanity, whether we like it or not. I’m not waving and cheering for the parade, because what’s happening in the world theater is also disturbing.

What will be, will be is almost as maddening as “it is what it is", but it’s all I’ve got.

I do not believe there will be a cure or anything to stop the progression of Parkinson’s in my lifetime. The poison did it’s job, triggering a nightmare from my genetic template. It’s all related: well water, herbicide and pesticide exposure, viruses, accidents, surgeries, the reported but ignored contamination in areas I’ve lived, trauma...more trauma. In part, yes, I blame human ignorance, and obvious greed. We were given paradise and have contaminated it beyond measure.

My unconsciousness was a virus. Parkinson’s was a cure I could not afford, but at least I’m awake.

I saw more doctors than I can count over a span of almost 40 years, and not one disgnosed Celiac Disease before it destroyed my body’s ability to absorb nutrients. The gut is our second brain- a motherboard for everything. Now GF and food-allergies are popular, if often mocked, labels to describe how one body’s sustenance is another’s poison.

I know a child who cannot touch the monkey bars if another child has eaten peanut butter and gone out to play without washing her hands. The world can feel so treacherous, and unforgiving.

Yeah, sure, I’m just another privileged woman being difficult for the chef. I’ll take your soy sauce instead of your tamari and barf my guts out. Your innocent mistake is my private hell. Over decades, this took a lot out of me.

I was in the hospital three times for undiagnosed internal bleeding (ulcers?), and until my friend Dr. Tom Rodgers mentioned he suspected an autoimmune disease, I was ingesting wheat regularly. A quarter teaspoon of gluten is a distinct poison for many systems. Some may experience inflammation or skin irritations, etc, yet I’m referring more to an internal nuclear holocaust that caused irreversible damage.

Yes, I have suffered. How do you think I can see yours so clearly?

Occasionally, a neglectful prep person or any absent minded waitstaff will make a simple mistake, and I get to spend the next 3 days pretending I don’t want to die. Try functioning with something a little easier, like the flu, or a slight dairy allergy, and you’ll know why I drop off internittently. It’s all that you might expect from severe food poisoning, with bonuses.

Please let me rest honey, sorry I can’t get you to school on time.

At least 2-3 decades of misdiagnosis and damage unleashed this neurologic disease. I’m not alone in this experience, and... if it really was this simple, someone would have been closer to a real cure by now. There are more complicated scientific and medical details I’m glossing over, for the sake of time.

Hi, I’m Heather. I’m a Virgo (Leo cusp), I like redwood forests and lakes and quiet cabins. I also enjoy wild dancing all night, music, improv, and exploring unknown spaces. I have children who need a Mom and a full intense life with a crazy schedule...just like yours. I was diagnosed with in curable progressive brain disease in 2011. It took me a year to believe this, so let’s call it 2012.

I am fearless, yes. What choice do I have?

I sensed something was wrong around 2009 due to a sudden inability to use vibrato on the strings of my violin or dance as I used to. A constant pain in my neck distracted every occasion, a virtual butter knife stuck in my spine, twisting. I became incapable of organizing incoming information, fatigued by any activity, and more easily overwhelmed. I felt slower and less hopeful about life in general as depression set in, but had no language and no concept of what was happening.

The most painful part is not physical. I lost friends, my marriage disintegrated, I dropped things that were once important...including an extreme capacity to multi-task and push through any obstacle. I forgot to breathe. I followed a teacher who broke all his vows. I fell in love with a woman too cool for me. What a trip!

Mom and Dad told me I could do anything.

I still move through and around obstacles, but at a different pace now. My life has undergone radical changes, and those who do not choose understand this necessity, have disappeared. Mostly, I’ve been lucky in friendship, and love.

The ones who left me for dead just didn’t know. Perhaps thinking they were protecting themselves from something that had nothing to do with me. Get a new therapist to parrot. I was not the enemy, and did not deserve such mild persecution and projection, but you were absolutely right to be horrified by Parkinson’s.

Parkinson’s is what happens while you’re busy making normal plans, with relatively healthy people. Suddenly, you’re sitting across from another doctor in another sterile office who nonchalantly informs you that brain disease is increasingly common, but “not a death sentence.”

Please hush and stop asking so many questions. Take your pills with extra water and deal with it.

You stumble into the harsh light of what’s left of your life.

So this is it?

This is the new “now”, and you ache to fully realize clichés hold trut, because now is all there is. Lock the door to the closet where your despair hangs. Don’t let the children or your family see. No one can save you, but this is where the fun begins! Welcome to my mess. You are invited to enter into the chaos of uncertainty, with a side of fresh gratitude. Take a front row seat for a glimpse of technicolor fear, or is it highest intention? You’re damn right I’m not flinching. Don’t you see, most of my nightmares have already come true?

To be continued...

We all have a mountain at our gate. What are you going to do about it?

Active Warrior Spirits

Active Warrior Spirits


I enjoy the glow of proud and active warrior spirits in our midst. Just as often, I’m inspired by the quiet ones who cannot run, cycle, lift or punch at this time.

Our strength is not limited to our current level of physical capability. I see you. I know struggle, and excruciating pain, and you ARE strong!

We take turns hurting, and we can still help when dealing with our own pain. It’s not a linear process- our healing. We take turns carrying one another in our support groups.

Depending upon my level of wellness, I’m willing to play either role for Parkinson’s awareness. After surgery and a long tedious recovery, I’m further humbled. There are equal amounts of agony and ecstasy.

Photo: Goofing around with Sam, who is an extraordinary woman who does not have Parkinson’s, but understands the struggle.

You may as well call me Cinderella.

You may as well call me Cinderella.

You may as well call me Cinderella.

I take at least 10 pills each day, just to function. I know this is not unique to PD, but at 118lbs, sans sleep, it takes a toll. Parkinson’s medications wear off at various points in a 24 hour cycle, but no one knows exactly when.

Forgive my haste, but I only have so much time. Time to feel sorta kinda normal before my body locks up, again. Time outside my room. Time to live without chronic and often overwhelming pain.

I don’t bother trying to find a glass slipper, because I can’t afford to believe in fairytales. I don’t tell you this or to get reassurance or validation. I’m disillusioned enough to chuckle at cheerful memes, and a few horrible people I’ve known who hastag “blessed” or “love” without a trace of irony.

Per usual, this is no SOS. I’m sharing my personal experience of a progressive brain disease primarily to spread awareness, and because the whole world seems focused only on survival of the fittest... and money.

The magic of movement (and focus, and energy) disappears without warning, so when I’m finally “on”, and the pain is at a minimum, of course I want to dance all night. Uno mas! If I go home first, the apocalypse might be upon us.

One last dance, please, before the familiar struggle starts all over again. I arrive at your door exhausted, and desperate for shelter. First you called me crazy, addict, and various false projections that you, along with your uninformed friends without a degree in neurology, use to define me. People have done and said some pretty ridiculous things re: PD, but it’s only made me stronger and clearer about who and what is worth my time.

You finally let me in, knowing this menance within my substantia nigra will likely hurt you too. When you took time to understand, you made a loyal friend for life. I would do anything for solid friends who stood by me through challenging times- you helped me forget the cowards who kicked me when I was down.

This is me, pretending to be brave- not because this is easy. I’ve made the choice to endure and thrive with as much grace as possible. Our children need to see their Mom rising stronger after each fall.

Thank you to the family, caregivers, friends, and partners who stick around. You have endured ugly parts of an unexpected and most inconvenient diagnosis- one that tortures millions- yet you’ve proven wise enough to distinguish the victim from the disease.

Not everyone has the capacity to witness such an unpredictable new reality. It’s most unsettling to those who rely upon strict and tight schedules. The chaos of disease must terrify them.

“Haha! Bless your soul! Do you really think you’re in control?”

In a few situations, I was disturbed by the behavior of people I once trusted. It hurt to be not only misunderstood, but attacked and humiliated for something beyond my control. With very few exceptions I have been overwhelmed by kind and incrediby cool people who just get it, but the cognative dissonance of supposed comrades was just too ridiculous.

A few clicks on google would have led the confused ones to various blogs and sites containing undeniable medical and scientific facts. It’s a lot to ask. We’re all impossibly busy! Of course I don’t expect anyone to bother with checking a blog, but I promise to surprise readers with the release of new work.

I am doing my best to tame this beast with the resources available in each moment. Your awareness of the brutality of this condition and your acceptance are gifts! I cherish these friendships.

Thank you.

Life IS beautiful, but sometimes it’s too intense, too much at once. 

 Oh you martyr!

Oh you martyr!

For anyone with Parkinson’s:

I am witnessing, and have experienced too much _additional_ suffering, because there is a general lack of awareness. I don’t expect to change that and I’m not here to “save the day!” but I’m fascinated by denial, even from metal health professionals. Astounding… the complete lack of awareness and further damage incurred by peanut galleries who have no direct experience.

I’ve had to made drastic changes in my lifestyle and communications. This includes a much smaller circle of those I’m regularly in contact with, and a lighter schedule.

This is not a choice.

People you know (and strangers too) may mistake your changes and unusual habits for bad choices, without realizing your experience is drastically different than theirs. You are slowly losing everything in a cruel and unrelenting way, but they only see you shake and call you a martyr. It’s the cognitive/non-motor symptoms of PD that are destroying my sense of well-being, not the chronic physical pain, or tremors, or any other crappy motor symptoms.

Most of us don’t know what to do in absence of experience, but true empathy and compassion are invaluable, and rare. My circle includes beings who put their empathy and compassion to use. Remember to pay attention to the behaviors of those who preach and promote, but do not offer much of, this verb we call compassion.

Under no circumstance should anyone who does not specialize in, or have a keen understanding of Parkinson’s be allowed to touch you.

I offer these reminders after close observation, research, and ridiculously unnecessary and painful personal experience- to be filed under things I wish I had known. Though ignorance can be willful or unintentional, both types damage people in close quarters- often at the worst possible times.

This idea can be expanded to intimate relationships. This is so important:

A normal template and set of expectations will NOT fit the behavior, routine, habits or activities of a PwP. Your loved ones will be disappointed and confounded, if they expect you to act and react just like everyone else or presume you are just being difficult, (or slow, or disinterested.)

It is not easy to be around Parkinson’s, this rude and uninvited guest tagging along, messing up plans and blurring intentions.

If an intimate with high expectations starts blaming or shaming you for symptoms and side effects they assume you can control, I suggest you back away.

Likewise, if you have to explain the unpredictability of this health issue repeatedly, and are treated with suspicion instead of support, just leave. It won’t get any better.

To add to the confusion, various social circles who choose to scrutinize without information will only keep the negative feedback loop going. What gets projected upon PwP can add an aspect of persecution to the overwhelming challenges. Not because anyone is being meanspirited, but they fail to acknowledge the iceberg effect of this disease.

When a relatively healthy friend says they’re exhausted, it’s a little different. Or if I say, “I’m not OK,” it probably means that I’m locked up and cannot walk or function, even in the most basic ways.

I used to take these things for granted. Before dx, upon waking I knew I’d be able to get out of bed and get going quickly. Now? The bod says, “Nope, not today!” Some days I’m gifted with movement and clarity- and on those days you might catch me singing or dancing, just because I can.

I’m no martyr. I’m a bada$$ with wings, and an infinite heart not everyone can (or should) see. Right now I’m just exhausted.

We are all doing what we can, with the resources available to us each moment, and it would benefit all to cut ourselves, and everyone, a bit of slack.

Thank you for reading. We all want more life.

On social activity and neurologic conditions:

On social activity and neurologic conditions:

On social activity and neurologic conditions:

Friends who understand the challenges of a progressive brain disease are the ones I continue to connect with. It’s hard to admit this as an independent kind of woman, first born and too stubborn to accept defeat, but I can no longer multi-task or juggle overlapping activities anymore. I need more time between each event. I might arrive stiff, or ready to roll. You never know. Wait… I never know either!

Symptoms of a progressive brain disease can turn suddenly crippling, then disappear. Family and friends who are willing to anticipate and accept my apparent and not so apparent (neurologic) complications are golden!

Some acquaintances and friends used to demand I join their routines, join them wherever they live, and “act normal for God’s sake!”
They were just unaware those of us with neurologic conditions aren’t capable of maintaining the same levels of activity. And normal? What IS that?

Navigating everyone’s schedules to plan within larger groups or loud crowded places also exhausts a PwP more quickly.

Living with YOPD, I’m forced to decline most invitations in order to conserve energy. Social engagements with limited transportation options or stringent scheduling must fall last on my list. A few relationships have not survived this reality, because demands surpassed capability. It not an unwillingness, it’s my new reality. When I push these limits, I collapse into overwhelm and fatigue.

It is our responsibility to communicate the ever-changing symptoms and side effects of our condition(s) clearly, because our people cannot read minds. If we need extra time, or closer parking, or special access, it’s on us to let them know. It’s unreasonable to expect anyone (even established caregivers) to anticipate all needs.

My kids know that my health changes each day- sometimes hourly. Like my closest friends, they know how to make the most of times when mom has lots of energy. We have fun, and forget about Parkinson’s as often as possible. Let’s talk about you, because I am really bored with PD discussions and explaining why one minute I am running and leaping and the next curled into a ball.

Accidental Temporary Caregiving

Accidental Temporary Caregiving

Accidental Temporary Caregiving

If you were temporarily incapacitated, and had no family or partner nearby, who might you count on to bathe and feed you?

Home healthcare can be unaffordable and difficult to navigate after unexpectedly challenging or disabling experiences. It’s a process requiring a health care advocate to facilitate/oversee hiring, manage fluctuating schedules, navigate insurance and set up all contracts and payment.

Friendship is voluntary.

While cultivating a relationship, it’s not like we sign up to nurse that friend back to health. We have endless lists of things to do, constantly nipping at our heels. Survival mode has become the new black. Almost everyone I meet appears stretched, anxiously overwhelmed and already at full capacity.

No one wants to burden or inconvenience their friends, but what if you don’t have other options?

Unforeseen circumstances and accidents and injuries happen. If you have any pre-existing condition affecting your healing process, like a brain disease, common surgeries or injuries can make life nearly impossible.

Asking for help, and feeling so exposed is uncomfortable at best. To feel helpless and be so vulnerable is not easy, whether you’re 20, 90, or somewhere in between. What’s your plan?

Only human.

Dear Linda Ronstadt

Dear Linda Ronstadt,

May I call you Linda? You see, your voice is the soundtrack of my youth. I’ve always felt through your creative work, that I know at least the musical part of you. I’ve never known life without your music. My Mother is a music teacher, and your album (Hand Sewn...Homegrown) was playing when my parents swaddled their first born, on the fragile drive home from the hospital.

Linda, thank you for always being there when I needed reassurance. You were there when I first felt like a woman, and you were there when I was longing for someone, or blue. You were there when I fell in love, and you were there when I watched that love walk away. You reminded me to be strong and gritty, yet feminine and playful. You were my way cooler hipper big sister, who knew things. I hung onto your every word, because everything in my world felt alright, when you sang.

We were diagnosed about the same time. You and I, sitting in somebody’s office in shock, trying to make some sense of the devastating news. I am a dancer. You are a singer. Parkinson’s is a cruel thief, taking the one thing brought us the most joy.

The problem with Parkinson’s isn’t the pesky tremors or loss of coordination that make it hard to pull shoes on, nor the stiffness and freezing episodes that prevent mobility by car and on foot... I’m housebound again today. These painful episodes can be expected though, and as humiliating as it might be to admit, I am now disabled. My voice, like everything else, is changing... no matter how I shake my little fist at the sky asking why.

I can handle the physical symptoms.

The part that’s killing me is the isolation of a neurologic condition we all know (based upon medical facts), will dismantle EVERYTHING that makes us human. Well, almost everything…

Linda, I wrote this note for you to use as a touchstone. Parkinson’s cannot take our spirit. I look at our peers and marvel at their perseverance and tenacity, even when there is a mountain at the gate that disturbs any sense of well-being.

I stand by you, and never give up because I don’t know who among our peers might be like I am with you- listening, for some reminder of connection. Listening, to stay alive. You may not be aware of this, but you might be someone’s hero. Someone Who is barely hanging on by their fingernails and ready to drop off the edge into the abyss of despair, of depression and apathy. Parkinson’s, like depression, is an incessant liar.

I’ll try not to sing off key.

You might be surprised to know I sang pretty well last night, for a dancer. I sang for you, and also for our Parkinson’s family. My song might have been raw and imperfect, but all I have to offer, standing there shaking the microphone, is the kind of swagger that can only come from a woman with nothing to lose.

All the lyrics and experiences, I’ll soon forget. But right now music is keeping me alive. I won’t forget those rides I took in my moms car when I was so excited to hear her new eight track ... oh Mom, wow! It’s Linda Ronstadt.

I’d have goosebumps along my scrawny arms and rolling the window down to shout along was a rare pleasure. You and I, we had the same questions!

When will I be loved?

Why was my crush no good?

How is it so easy to fall in love?

Your velvety voice was a beacon. Like Roberta Cleopatra Flack, Nina Simone and Bonnie Raitt... I had only brothers, so you became my sisters.

Sometimes I imagined that you were my best friend and I was invited all your cool gigs, sitting so close I could see beads of sweat on your shoulders. I would try to dress like you but didn’t have breasts or confidence to pull it off. What I had was your lyrics, running on a loop.

You’ve stated that people with Parkinson’s can’t sing, that it’s impossible. If you are referring to the perfection that was and is your talent, I would like to add that nobody can match that... with, or without a brain disorder. Your legacy remains untouched, unparalleled, and has nourished me all this time.

I would be honored to sing for you sometime. It’s my turn to remind you that the queen of hearts is always your best bet.

Love, 
Heather Kennedy

PS. My stage name will be Kathleen Kiddo (The nom de plume adopted after diagnosis). Though I can’t do justice to your epic legacy, I’ll dedicate these songs to you, sister, until my one small voice is taken away.

https://youtu.be/myq0zxDHK1g