Parkinson’s: Yes/And

 Snarky Parky & me 

A Life of Adventure with Parkinson's 

Narrated by Nancy Mellon 

Coordinated by Corrine Bayraktaroglu

“Yes/And”

“Given the nature of Life, there may be no security, but only adventure.”

 Quote by Rachel, Naomi Remen, M.D. in “Kitchen Table Wisdom” 

• “Shiloh is not listening to me!” 

• “Emberlee wont play my game!”

My son Kelsey told our bickering girls, that if they played their game while using a special, improv theater technique, called “Yes/ And” it would keep their game going. 

So they tried it and it worked (as long as they remembered to use it.) 

Yes, your big Princess Troll, came out from under the bridge and said I had to answer some questions to cross her bridge and then my giant Robot, Ninja, Ballerina got into her space ship and flew away! 

So what does that have to do with life with Parky? Life is not an either /or proposition. It is a Yes /And kind of adventure. (Hence, I decided to change the second line of my title for this new year.) 

It was “A Journey Into Parkinson's with Nancy Mellon.” I had always quaked at the word “into” Everywhere it was called a “journey,” so that made sense to me.

Let me introduce my new second line- “A life of Adventure with Parkinson's.” 

I'm not sure I believe it yet, but I like it. 

It is a new year, I've been thinking I would like to revisit my blogs and read them again. 

I want to see what I left hanging, and remind myself of what I still think is helpful to do or think about in 2024.

So today I'll start at the beginning. 

August, 2021, I was told by a neurologist, I had Parkinson's.

September, 2021 I wrote my first posts.

My first post was about getting my diagnosis I talked about going through the 4 stages of grief. “Yep, Denial, been there, done that, Anger, and then something like negotiating, and acceptance.  Some days I spin through 3 or 4 stages one after the other.” Three years later, I still struggle with anger, acceptance and grief. This is why, I have started having monthly appointments with a psychologist and I write. 

My mom's experience with Parkinson's and how it scares me is a constant theme in my first posts. I would chant to myself “I am not my mom; we are all different.” 

That has changed. I often talk to my mom now and ask her forgiveness. I now know and understand so much more about what she was going through. She persevered alone. She was so incredibly strong. I did many things for her, but she never talked about what she felt, nor do I remember asking. I worried about her and took care of her and finally took over doing for her all the things she needed done to live. After she came to live with us, I tried to find things that she could do that she would enjoy. I also started hiring people who could come in and help us survive. That too felt like a full time job.

But I never sat with her listening to her talk about how Parkinson's affected her, about how sad she was or how angry. While she could have talked, my mom never talked about how she felt. Nor did I ever hold her while she cried. She never cried in my presence. (Not even when my dad died) I think now that she was trying to be strong for me.

I knew in the years she lived with us, that she was unhappy. I was very unhappy too. One day, I thought of calling Anita, a dear friend of mom's, who now lived far away from mom, back in Illinois, I put the phone in mom's hand. I could hear mom's loneliness in her voice. But she couldn't talk very much to Anita. Parkinson's had taken her voice. I grieved for her, but didn't know what to do, she needed round the clock care. Mom had slipped into dementia during her last years, 

I now know how much the Parkinson's could have emotionally deadened her and how Parkinson's held her face captive to her sorrows. My son said lately that he had felt that grandma was mean. In those last years, her face always looked frozen in unhappiness. She wasn't mean. She had Parkinson's. 

I am so thankful that Steven is my care partner and that we are all, 30 years later, much more knowledgeable about this disease. I am so sorry mom that you didn' t have all the support that you needed. I love you mom. 

In the October posts- I had found on line, the Parkinson's Foundation and I called their Help Line.

AND 

I found so much support from the comments on my blog and from the emails that friends sent me after reading a post. Thank you to everyone who has written to me or talked to me about a post! 

Here are just two of them!

Theresa's loving Welcome in the comments and then her quote at the end:

I’ll leave with a quote that a nurse told me one day. I have always remembered it and tried to live by it.
“Every day is a gift.
Every day is a blessing.
Every day is a party.”

Let’s have lots of parties!
Love you,
Theresa

Cranky Pants post, October 2021 -The comments section, wonderful advice from Amy-

Nancy -- OF COURSE you feel cranky and unsure of what to do! I'd be in major tantrum mode. I encourage you to let it out -- scream at Snarky Parky for being in your body. Tell SP exactly what you think of him/her. (I did in another post, but it took me over a year to do it) Tell SP in no uncertain terms that you are an unwelcoming host. Then throw something against the wall! Maybe make a poster of SP to rip up or sling mud at (one way to get some exercise!). Am I being dramatic? Hell no! Let the energy flow! (I think this is something I should do regularly!)

Ai prompt by c.bayrak

On the lighter side, you could just start a conversation with SP and ask it what it wants from you, why it is there, etc. Or you could engage your body in serious conversation and ask it what it wants from you. But I really suggest going with the yelling and tantruming first! Love you, my dear, and I will be happy to join you in some mud-slinging at SP. 

And though I hesitate to say this, I will say it anyway -- don't be afraid to ask for divine guidance and help. Ask your higher self, your guardian angel, archangel Rafael, God, the Universe, the Divine Mother, Mr. Holy Pants, (I love all the choices, I especially love Mr. Holy Pants!) whoever is willing to assist you and come to your aid. Ask for guidance in whatever form it can be made available to you -- words, signs, dreams, books falling open to a certain page, coming across an article, etc. If you don't believe in divine guidance, do it anyway. Myself, I'm big on consulting psychics. What have you got to lose? 

And something else just popped into my head -- muscle testing, or "applied kineseology," a method that many chiropractors use to ask questions of the body. If you want to talk more about any of this - or would find it amusing to hear more crazy ideas -- you know where I am! XO

May we all be blessed with the support we need,

Cheers,

Nancy & the Snark