The Only Annual “Shave Mom’s Hair off Party!”

Ok, people. “Clean sweep! Fore and Aft! Sweepers … Man your brooms!”

Just one of the chants, ditties, aphorisms, words of wisdom and occasional military drinking songs I learned from my dad. Every time I give voice to one of those little gems, I say a quiet “Hi” to Dad, who I believe is just passing through.

I have brain surgery on Monday, April 5. Holy shit. Never thought I’d give voice to those words, did I?

Well, if I’m going down this road, 1) I’m going to be dancing. 2) It’s going to be funny, even – or especially – if it’s not. And 3) I’ll be getting by with a little help from my friends and sons and son’s girlfriend and family … and the wonderful nurses who will care for me … and the brilliant surgeon who will help me be me for a while longer.

And I have decided that this little journey is going to be chronicled visually, not solely with words. To that end, I contacted one of the best peeps in the world, and one of my former Gold Beach students, Desi! I am so blessed to be friends on FaceBook with former students.

Their memories, shared so happily, are what I treasure. “You were so hard! I learned so much! Oh! There’s the look! I remember that look!” They tell me how I challenged them, and I say it’s because I knew they could do more. How I held them to such high standards. And I tell them, of course I did, they were my students. I loved them. Why would I not? And that was the key. They knew, and they know, that I love them, and will always see them as “mine”

But why Desi now? Because she is a great photographer with three long-suffering photogenic kids. She, however, said “no” when I asked her to take some nice pictures of me – the “before” shots. There was someone she knew, though, a professional photographer, who might be able to help us out.

Which is how Jared and I found ourselves under the St. John’s Bridge on a cold, blustery afternoon in March. With Desi, her daughter, and one amazing photographer. Casi was a godsend and we had such a fun time. My arms are crossed in a number of the shots – for no other reason than it was freezing cold and the rain was falling sideways. There are some pictures where I am laughing so hard I can’t stand up straight, and one where I’m starting to dance. Casi was able to capture some wonderful moments of the day (who ever thought I’d end up teaching Desi a line dance under a bridge?).

Fast forward to April 3, Holy Saturday, two days before the first surgery, you will find me first at 6:00 am down on the Waterfront to take my umpteenth COVID test. But even better … the afternoon will find us celebrating the Only Annual “Shave Mom’s Hair Off” party with Matt and his hair clippers?? Yes. At OHSU they shave one’s whole head for this operation, and I want to see what my head looks like without incisions and sutures.

Bring in Desi, and her camera, and her brilliant smile, and her amazing heart. And wine. Don’t forget the wine. Because Desi wants to see me with a mohawk. And I said “yes.”

Of course I did.

P.S. I highly recommend Casi Yost Photography (https://casiyost.com)

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.

***

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?