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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.

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. 

Not Flinching

Not Flinching

Not flinching. Howling is more fun.