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?
Lifting you up as you go through this journey! Thank you for letting me be a part of it!
Thank YOU, Nicol, for coming with me!
Jane, your honestly, bravery, openness heartbreak and joy just touch me in every way.I wish I lived closer so we could dance!!
Wishing you the best in your decision and please keep us updated❤️
Thank you, Sue. I’ll keep you posted. I have an appt at 9:15 this am, so I’d better get a move on!
Oh Jane. So much news.
It sounds like a wonderful choice for Friday, but heartbreaking I’m sure.
The surgery is hopeful? There may be help from it? I’ll want to follow the details as you publish (if you publish).
The book for first responders is a great idea and project for you to collaborate on. Wow. I love collaborative projects of all kinds!
Thank you as usual for your post!
I’m going out to Friday’s new home for a visit this weekend or so, just to check in and see how’s he’s doing. It’s part of our “adoption” agreement. I’m sure he’ll be happy and fine, and it will be nice to see him.
Yes, and I had my regular appt with neurologist yesterday and he is hopeful. I am going to post … I’m going to take pictures (or ask nurses to take pics) so I can it, too. And I love this book project. We’re getting close to the end of writing and initial edits. Next is the proofreading/editing and publishing. There is a real need for this book and philosophy.
I tried to comment. WordPress is giving me odd errors. Will you let me know if you see it?
Best to you Jane!
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I’ve been missing your blog, thank you for sharing your journey.
Your strength and perseverance is amazing and a testament to us all. You are so beautiful!
Thank you, Jenny! Hope to go north and see you sometime … maybe this summer … tired of being inside! Hope you are well! Love to you, Jane