I HATE PARKINSON”S : From A Battle Ready Woman

Snarky Parky & me 

A Journey Into Parkinson's with Nancy Mellon 

Coordinated by Corrine Bayraktaroglu

“I HATE YOU PARKINSON'S” 

From a battle ready woman

I saw something that stopped me cold, in “Every Victory Counts for Care Partners”(a Wonderful, FREE, Manual from the Davis Phinney Foundation.) A care partner said that they all, at some time, say out loud that they hate Parkinson's. I had never thought of doing that. I am changing that right now: 

I HATE YOU PARKINSON'S. 

I really do. 

I am angry and I am sad. I am worried about my care partner and I am thinking about dying. Which seems OK, in the circumstances, (but please don't worry, I am not thinking of taking my own life.) 

The amazing part is that this is not the whole of me. I also am OK. I still have a sense of humor, I can still smile (Thank you God, thank you!) And I am thrilled to still have friends who care and a husband that loves me.

“Living means learning to hold the beautiful and terrible in one palm “ Quote from Suleika of the Isolation Journals

But things are changing. Who am I now and what can I do and what can't I do now? My relationships are changing too. Corrine offers me her arm each time we take off for a little walk. And I am very glad to have it. I still have the double vision, so my balance is often off. I am also amazed at how many people that I know, that have dealt with double vision! I just found out this week, that Jenny had double vision problems, a while back, and they kept getting worse. The Eye Doctor kept adding more prisms to her glasses, finally she had to have an operation to fix it. But it did fix it! 

Some good news, I am now using a 4 pound weight in my Cardio Rehab work out. That's double what I used to use! And I made that choice, no one is forcing me to go faster than I want to. That seems to be the difference for me, between Neuro Rehab and Cardio Rehab. Because of that, I find myself a bit leery about going to Neuro Rehab and kind of looking forward to going to my Cardio Rehab. 

Breaking news: after writing the last sentence, I had a session in Neuro Rehab. OOOO Boy, after talking with my PT about the stiffness and pain in my neck and shoulders, she did a lot of work loosening them up. She also showed me how to search for and destroy the sore spots, myself. (It is a battle plan after all.) Perch the back of your head on a tennis ball and rock it gently back and forth,Then you stay on that pinpoint of pain until it releases. Believe me, it feels much better, when it releases. 

This is 2 days later and it still feels better. 

I decided that I like going to Neuro Rehab:-)

And it makes good on what I had read : Having a Physical Therapist who is part of your team from the very start of your Parkinson's journey, can make a big difference in your comfort and ability to carry on with grace and joy. Your PT can help with the physical challenges as they pop up.

Lately, I have been reading, the Care Partner manual in the “Every Victory Counts” series. (The double vision has made it harder to read, especially when I am tired, but I can still read.) 

This manual has lots of tips from care partners for care partners. It feels very much like it is advice from the trenches. It is good to hear from people who are fighting and living through this battle (and a battle, I now realize, is what it is!) 

I have never been a battle ready woman. Can I become one? I sure don't want to be a person who doesn't care to engage. I care, damn it. But what do I care about enough to fight in this battle? I care about my husband, my family, my friends- I feel that I care about all people and all life forms. 

I care about you and how you are feeling today. Shall we battle this stinkin' disease together? I think together is better than separate.

So here is a positive tip from the trenches: Most night's I am microwaving a couple of my husbands socks ( the socks say “Dad's Sock” on them) that I have filled with white rice. One of them is very full. It is packed- pleasantly squishy to the touch, but also very firm, 

It makes a very satisfying thump on my back when I take it warm and smelling homey, like hot rice, out of the microwave, and fling it over my shoulder. I thump it against the sore spots!

The second sock is my favorite. Same length, they are long, white, athletic socks. But this one is not filled nearly as much. This is the back-of-the-stiff-sore neck, sock. I have come to Love this sock:-)

I microwave it for 2 minutes, squish it in the middle and put it behind my head. It's hot to begin with- I have to take it back off but it feels so good and comforting.

Believe it or not, telling you about my sock tip, is for me, a battle worthy tactic. If I am thinking about helping you in some way, it changes my mood from sad and angry to feeling good. The act of deciding to think about helping rather than about being miserable, is part of my battle plan. 

Cheers,

Nancy and the Snark

FOOTNOTES FROM CORRINE :  I too HATE Parkinson’s. There I said it. 

Phew! Got that off my chest. 

I love you petal, and want to ride a horse behind you and your fellow warriors as you all charge into battle and my battle cry is “Up Yours Parky!”