Not the Last Blog

I post this blog entry for reasons I don’t quite know how to explain. Certainly not to say, “Oh, woe is me.” But here’s the thing about “hidden” diseases or conditions. No one sees them. If I didn’t write these truths and share them with people beyond the Parkinson’s world, no one would know the struggles faced by those people who suffer when nobody sees them. I work hard not to show the worst of my symptoms to the world. I carefully time my meds to coincide with the activities of the day or I try to schedule around when I know will be my on-times (times when the meds are working). That’s just who I am. And I don’t feel that comfortable sharing this much, but for everyone who comes to me and says, “Thank you for what you wrote. You put into words what I feel but can’t say.” I have to do it. Just in case someone can take my words and know that one person, in fact more than just one person, understands.

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29 January 2021

The trouble with writing a blog is that you (ok, I) never really know who is or how many are reading, and why, and if what you (ok, again I) are pouring out will help anyone, or if you stop, will anyone notice. Or if people are just tired of hearing about Parkinson’s or whatever else ails you (ok, yes, me again).

Kind of like when people drop off Facebook for whatever reason, high mindedness or just feeling peckish, and come back in a week or two to find the “world” has gone on without them.

My most-recent post was on November 28, about love. I still believe what I wrote, maybe more so. Love is what it is all about. For me. The trouble comes in finding others who feel that same way.

People who ask “Is it the journey or the destination?” are fooling themselves by thinking this world is based on a dichotomy. There is always another way. Neither the journey nor the destination matters as much as the company. At least to me and those whose company I value.

(I hadn’t meant to write that, but sometimes I have to listen to the voice in my head.)

A great deal has happened since that November post. I have “rehomed” Friday. This is the new phrase for “gave away to a new home.” Knowing it was the right decision for him and for me did not make me any less sad. Friday is just the best gallump in the world. He is 75 pounds of golden retriever – happy, drooly, and goofy. What he needed to be was focused, clear-headed, and calm. He was not cut out to be a service dog, which is what I needed him to be, and I came to realize that he would be happiest in a family with kids who would play with him and a mom who could get up in the morning and take him for a good walk. A mom for whom he was not a menace. Friday’s biggest downfall was that he continued to forget that the person holding the leash was usually me, and that I weigh 100 pounds. Practically a kite if he got a good push off. If he chose to bolt, I would be a goner. Even given that, my decision was not universally well-received.

But my trainer found the best home in the world for Friday. A family with three teenage daughters – and a mom who has wanted a Friday for many years. This mom and I have become very good friends, we’ve even met up for tea so Friday will remember me. His new home is a golden’s paradise – toys, food, people, places to run. I’m so glad he is happy and (equally glad) I am safe.

The stomach surgery I had last July has finally concluded its repercussions, I hope. The concern that I had a connective tissue disorder, which necessitated a trip into Rheumatology Land, has been ameliorated. The concern about the scarring in my lungs, brought up by the mayor of Rheumatology Land, has almost been labeled with a tentative diagnosis of chronic nontuberculous mycobacterial pulmonary disease (NTM). It is not contagious person-to-person. We are treating it symptomatically right now since the damage to my lungs has been slow. I cannot fix that damage, but I can slow the progress even more with palliative steps right now. Well, that and I have more pressing health issues.

There is a saying in the Parkinson’s disease (PD) world that if you’ve met one person with PD, you know one person with PD.

Everyone’s path with this disease is unique, and doctors are loathe to indicate how far along the spectrum you might be … self-fulfilling prophecy and all that.

I was only 52 when diagnosed, younger than most, but I’d had symptoms for at least 5 years. I am a woman. No family history. Usually the younger you are when you start showing symptoms the slower the disease progresses. Which would be good news if there was a “usual” in PD. My PD has progressed more quickly than at least I had expected, and the pain is greater than I imagined.

That is something they don’t tell you in the beginning. PD can cause an incredible amount of pain, and since every single muscle in the body can be affected, there’s a lot to go wrong.

I have dyskinesia which causes the muscles of my arms, legs, torso, and neck to move, snake-like, on their own, causing both pain and amazing fatigue. I have dystonia. These muscle cramps begin in the back of both legs, but also impact my right foot (turning it under and rotating it inward), and toes (tensing them straight and then bending them sharply under). Again, severe pain. I freeze and can’t walk. My medicine fails at random times so I don’t know if halfway down the aisle at Safeway my legs will stop working and I’ll need to hold onto a shelf to keep upright.

A few years back, I was asked if I would ever have brain surgery for my PD. I said No Way. That was BRAIN SURGERY! But I have learned a valuable lesson. There is a difference between knowing and understanding. I knew then the path my Parkinson’s could take. I understand now the pain, fear, and limitations that really means. That is the bad news. The good news is that there really is a surgery that can reduce the kind of symptoms that cause falls, pain, and other muscular/skeleton problems.

It’s called Deep Brain Stimulation (DBS), and yes, it’s brain surgery. I will not go into it now, if you are curious, I encourage you to research or come ask. I have been told I’m a good candidate for this procedure, but OHSU has a team approach to neurosurgery and so I have almost completed their exhaustive evaluation process.

By the time push comes to shove, or this ends up posted, I will have had eight appointments during January. On February 3, I will find out my fate. If I pass (or fail depending on your perspective) examinations, I could have surgery before the end of March.

This surgery would help me in so many ways. If you do not have Parkinson’s disease or some other painful, degenerative brain disorder that is slowly (or quickly) stealing your life, you can’t really understand how painful and debilitating PD has become for me. Nor can you understand the dark places I have to travel, through the pain and exhaustion, to search desperately for the sun. Understand, not just know. Just as men can never understand the sheer pain and utter joy of childbirth, people who do not have a chronic, progressive disease that will likely eventually kill them will never understand. When I found myself sobbing, crawling down the hallway because I couldn’t get my right leg (and ankle and foot) to relax enough to go straight enough to bear weight, I knew I had to do something to save myself.

I am ready for this surgery on many levels.I look forward to moving when I want, not when a damaged part of my brain wants; to walking flat footed and secure, not having to worry about an entire quarter of my body getting a charlie horse.

I have not been writing for myself lately, but I keep coming back to this. I read it, walk away, make an edit here and there, add a new paragraph … then walk away to work with a long-time friend on the first of what we hope will be four books designed to help first responders (firefighters, peace officers, veterans, and health care workers) who are on the front lines in our communities get the help they need to recover from PTSD. It’s a wonderful project and I’m so proud to be a part of it.

I’m trying to stay calm, breathe purposefully, and make the best decisions I can for myself. I am tired, worn down, sad, lonely, … I am stiff and sore and beat up by my own body … I am chatty, funny, kind, if there’s a song with a good beat, you will find me dancing to it. If you do, come dance with me. I’m on this journey to some destination, and while I already have some excellent Polos to my Marcos, and some wonderful friends in the wings, there is always room on the dance floor.

P. S. Should I go forward with DBS, I will post updates on the process and results, and maybe pics … did I mention I get my head shaved?

Get A Move On

I get tired of the platitudes.

“I am bigger than Parkinson’s.”

“If your dreams don’t scare you, they’re not big enough.”

“If life gives you lemons, make lemonade.”

Because there are times when Parkinson’s is bigger than I am, when life is scarier than dreams, when I’m surrounded by lemons but not vodka or sugar.

The existential argument I’m having with my belief system is reaching a draw with no clear winner. Because sometimes Parkinson’s wins. Sometimes my lack of vision wins. Sometimes it doesn’t matter if I’m stronger. Or if I’ve gained weight (muscles or alcohol, it’s hard to tell). Or if I can or can’t organize my way out of a wet paper bag.

Everyone has their own issues. Some are bigger than others, it’s just not anyone’s place to judge the depth of someone else’s suffering. But no one wants to hear you complain about lost love, lost life, lost health, lost vision, lost hope. And those who suffer don’t really want to hear another story about overcoming the odds and obstacles. At least I don’t.

Now, I am simply trying to find a way back to the life I loved. Of course, it sucks that the main reason I loved it has gone, but no one wants to hear about THAT either.

As I walk to the kitchen in the pre-dawn light, words I have lived by  all my life begin to echo around my head.

Suck it up, buttercup.  It’s time to get a move on.

 

Warriors

I met the most amazing group of warriors yesterday. 

I fall asleep with difficulty, wake at the drop of a hat, and spend most of every night awake. Night before last was no exception. I woke up at 3:00 and lay in bed – awake – until 5:00.

Something compelled me to leave the pocket of warm I had created around myself, throw on sweatshirt and sweatpants, panda slippers, and take the first of my daily Parkinson’s meds. I finished preparations for coffee begun the night before and went back to my room. This was going to be an organizing morning.

It was also going to be a boxing morning.

I’ve had to miss a few of my Tues/Thurs boxing classes, and even though I had tried to make it – I had not yet made it to the 8:30 Saturday morning Ladies Only class. Fatigue from dancing more often, lack of sleep, depression, loneliness, meds, are just some of the factors that combine to rob me of energy and purpose.

This morning, though, I kept the promise to myself and was out the door before 8:00 for the highway drive to Tigard.

There were introductions and re-introductions as the usual ladies, and a few newcomers, arrived. I noticed with a lump in my throat the different stages we are all in our struggle against the insidious nature of Parkinson’s.

I remember few  names – personality flaw, I’m afraid – but everyone was so kind, concerned, and welcoming. 

Women like Kat, a beautiful spirit inside and out. We  knew each other form our participation in a monthly teleconference support group. I was so happy to put name with face. Her giving heart puts people at ease from the start.

And Claudia, a spitfire from my other class. She is fierce! A relentless participant, she pushes herself, constantly trying to move faster, reach further, hit harder. And she introduced me as an inspiration because I dance through every workout. She inspires me.

And Jean, my lovely friend from the weekday class, who gave me a hug as we whispered about being workout partners  like we were 10 years old on the playground.

The workout was tough, but we laughed and sang our way through it. Shania Twain was drowned out by a dozen women shouting, “I FEEL LIKE A WOMAN!”

And I danced my way through what I could of the workout. Skater slides. Boxing. And then we went out for coffee!

A table full of unique, talented, beautiful women. Sharing experiences  – medications and side effects, direct brain stimulation (DBS), the value of counseling. Sharing our art and the projects carried close to our hearts – beading jewelry, writing, painting watercolors.

We talked about dance. And Parkinson’s. And hiking.

About persevering. And loving. And relying on each other.

Their open hearts, genuine concern, and joyful souls drew me in and gave me a place.

I don’t know if I will fully recover from the heartache I am feeling. I honestly don’t.

I do know if I make it, it will be with the help of women like these.

 

Facing It

by Jane Miller
November 1, 2018
There comes a time when you have to face the fears you can barely acknowledge, let alone stare down, and step up to the edge of the precipice. Your body tenses as you look down into the abyss and realize that while there are people who love you, you are in it by yourself, and pretty much have been since the beginning.
Being diagnosed with something like Parkinson’s, or sympathetic ophthalmia, or facing multiple surgeries does something to your psyche. A part of you can accept reality, at least in small bits, and knows how bad it will be. The other part of you refuses to accept the situation, or how bad it is, or how difficult facing it is going to be.
Breaking down the wall between knowledge and acceptance or understanding is a delicate process. Too soon and you are scarred, unable to save yourself and make the most of your strengths. Too late, and you’ve lost the chance to slow the disease progression, to learn how to live, to help others on their journey, and accept help on yours.
So I found myself walking out of the boxing gym this morning, feeling a little shell-shocked. I climbed into my car, and cried. Admitting to myself how afraid I have been and still am about facing what I have to. How once I cross the line and face fully and completely the truth about Parkinson’s, there will be no going back into denial.
Having Parkinson’s disease is like playing a game, only you don’t know the rules, which are different for everyone; you know you can’t win the game anyway; and no one told you where the enemies and battles are. It is not until later that you realize the truth.
You lost your sense of smell? Parkinson’s.
Your handwriting is becoming illegibly small? Parkinson’s. Can’t fill in the information on a check? Or a form that’s not online? Write a personal note that can be read without the magnification aid of the Hubble telescope? Parkinson’s.
Pain from muscle tension, cramping, and continuous movement dogs you every step of the way? Parkinson’s.
Fatigue, bone deep heavy fatigue, creeps up your spinal cord and into the tiniest corners and crevices of your brain? Is it the meds? Nope, Parkinson’s.
The heartburn, the intense pain when food or (good grief) water stalls partway down the esophagus, threatens to come back up, then stays stuck for hours? Parkinson’s.
Falling. And the gut-wrenching fear of falling again. The memory of such pain that death was welcome and God nowhere to be found. Parkinson’s.
What a stupid game, you say. No one tells you these things. Except they do. You’re just not ready to listen.
Until you are. And then it dawns on you. Denial has been preventing you from moving on. You can’t defeat the enemies in the game if you deny their existence. It takes recognizing them, seeing them for what they are and not what you’re afraid they are, and then charging. It is only through acknowledgment, strength, and perseverance that you can win this game. And you can win it. We all can.