I Stand Here Sobbing

It’s a few weeks ago. My workplace hosts a Benefits Bash. You know, one of those events where the health insurance people and the life insurance people and the college savings people and the benefits team and whoever else gathers together to hand out info on the next year’s plans.

They try to make it fun. The room is full of giveaways, like stress balls, pens, and notepads. They have refreshments. It’s kind of a hubbub as folks mill around, pick up information, and socialize a bit.

Except for me.

I stand sobbing at the prescription plan table.

My workplace announced we’ll begin a new prescription plan carrier on 1/1. This is part of their effort to stop mounting healthcare premiums. They hoped this would be a completely “neutral” change with no ill-effects.

But in the middle of the Benefits Bash, I find out the new plan “excludes” my husband’s major medication for his Young Onset Parkinson’s.

First, lemme give credit where it’s deserved: the benefits people at my workplace are kind. The prescription plan people are kind. The benefits brokerage people used by my workplace are kind. There is an appeal process and they will help me through that. Hopefully, the medication will be approved in the long run.  Even if the drug doesn’t get approved, the drug manufacturer may be able to help us with expenses. No one switched prescription plan carriers in order to make things harder for me or my family.


But, but, but.

None of that matters as I stand here sobbing.

(Yes, intentional references to Tillie Olsen and Nancy Sommers.)

Gary was diagnosed at the age of 30. Now, he’s 37 with advanced Parkinson’s Disease. None of you want to hear the litany of symptoms and issues that have accompanied his PD.

You really don’t.

Parkinson’s Disease kills the brain cells which produce the neurotransmitter dopamine. Without dopamine, your brain has a really hard time relaying messages to control a whole bunch of things–movement, digestion, sleep, etc. Lack of dopamine also plays a role in depression and apathy.

So, the main medication people with Parkinson’s (PWP) take is some form of levodopa/carbidopa. Levodopa is absorbed in the brain and changes into dopamine. You need carbidopa in order to prevent the levodopa from being broken down in the bloodstream, so more of it can actually reach the brain.

Rytary is a special combination of levodopa/carbidopa and it’s the drug Gary’s been on for years. Until now, it has cost us $60 a month.

Out-of-pocket with no insurance, it costs about $1,500 a month.

$1,500 a month

$18,000 per year

$18,000 per year

$18,000 per year

(Okay, I just wanted to make sure you saw that.)

The new prescription plan will cover other formulations of levodopa/carbidopa, so that’s why they don’t cover Rytary. But here’s the thing:

  • “Regular” immediate release levodopa/carbidopa is absorbed very quickly in the body and then used up. This results in dramatic on/off times. You have too much dopamine and lots of dyskinesia (involuntary movement), then it wears off and you have not enough dopamine, so you experience dystonia (muscle cramping) and bradykinesia (slowness/stiffness). It’s up, down, up, down all day long with some good middle periods sandwiched in there.
  • “Regular” extended release levodopa/carbidopa releases slowly over time. This means it takes a LONG time for the effect to be felt and you might be “off” for quite a while before managing to feel good during the days, even when you’re taking the extended release formula before bedtime. Overall dopamine levels tend to stay lower even once the levodopa/carbidopa has reached it’s full efficacy.

Rytary combines the immediate release levodopa/carbidopa PLUS 2 different types of extended release levodopa/carbidopa. The 3 types work together REALLY well to give a very smooth day. Just enough dopamine to feel good right away, not so much that it plummets before the next dose. Gary has the best results when he takes Rytary 4x/day–it’s the smoothest we’ve ever been able to get his physical symptoms.

(If anyone wants to geek out and read some supporting research.)

So. That’s why we need it.

Hopefully it will get approved.

Hopefully, hopefully, hopefully. 

The worst part? We can’t even begin the process to get Rytary approved until mid-December at the earliest…and possibly until January 1. We are going to have to cross our fingers that the process moves quickly and we can get answers (HOPEFULLY APPROVAL) before he runs out of pills in mid-January.

(What if we don’t know by then? Stop worrying, Sarah. You’ll figure it out. Right? Tell me right. )

But even if it DOES get approved? Here’s how this has already impacted us.

– I’ve spent hours discussing our situation with multiple folks from benefits, from the prescription plan, and from the healthcare brokerage people.

– I’ve spent a bunch of time investigating whether we should drop Gary from my insurance and try to get him on a Medicare Rx plan. Not sure which of those plans might cover Rytary–do any? But here’s the kicker: open enrollment for a Medicare Rx plan ends in December, but we won’t know about this until January. We don’t want to drop him from my insurance unless it is absolutely necessary.

Stress. Stress, stress, stress. So many what ifs and then whats. So many uncertainties.

– I’ve wondered if I should be looking at other jobs. I love my current job. LOVE. But…if we can’t figure out a way to make this work, I can’t afford $18,000 a year for a medication. And I also can’t bear to see Gary live with a lower quality of life than he has now.

There are days we barely have enough spoons to get by with his current quality of life. I can’t imagine how much worse it could get. (Except I can, because we’ve been in worse phases of this stuff. I just…really don’t want things to get that bad. I’d say I’m not sure I can handle it, but I always manage to find a way to handle it. But. Please, no.)

– Lots of tears. I’ve spent quite a bit of time crying about this already. In fact, I have a hard time talking about it without crying. I cry out of worry and fear, I cry out of anger. Not anger at any individuals, but anger that our system allows for this. I cry because I’m kind of embarrassed about crying about it in front of people who are trying to be kind–and then I cry because I’m mad at myself for being embarrassed about it, when this is a situation that warrants strong emotion.

NO ONE should have to worry about losing access to a needed medication.

NO ONE should have to possibly pay $18,000/year for a medication. How is that even a thing? Seriously…how is that possible?

I have a very good job with a very good employer and we purchase the best healthcare plan they offer.

Our healthcare system in this country is BROKEN. 

Utterly broken.

The unseen hours of work and research and stress about things like this have a HUGE impact on care partners, people with disabilities/diseases, and our families. I have a piece on care partners coming out soon in Disability Studies Quarterly; I’ll link to it here when it’s available.

So. I’ll keep you all updated. I’ll hope for the best.

But I wanted to use my voice and my situation to illustrate that OUR HEALTHCARE SYSTEM IS BROKEN.

Thank you for reading and caring.

Just the Tip

Those of you who know me in person (or follow me on other social media) know that my husband Gary had a rather dreadful, freak accident this past summer. I didn’t want to write about it until the legal liability was all figured out.

zombiefinger02_zombiekingI’m not going into the details, but Gary was sitting in a folding chair that suddenly collapsed, caught his finger, and sheared off his fingertip. Like. Cleanly sliced through his actual fingertip including bone, which then flew across the room. He had to have a “revision amputation” the next day, where they removed more tissue and bone in order to close the wound and allow it to heal. He lost almost all the distal metatarsal.

We both cope with things by drawing upon dark, dark humor. I immediately imagined a zombie fingertip scritch-scritch-hopping along on its nail. The zombie fingertip would commit crimes, leaving Gary’s fingerprint behind, so that everyone would think he was a master criminal! But it would really just be his zombie fingertip, framing him! But who would believe that? Because there’s no such thing as a zombie fingertip!


Just two more things to say:

1) I am sure losing a fingertip in any way is a horrible experience. But if you’re using a chainsaw or log splitter or hedge trimmer or axe or giant knife, I do think–after you’ve gotten over the shock and the medical necessities–you might think, Well, that sucked, but I always knew sharp things can do that. But…losing a fingertip while SITTING IN THE CHAIR? It’s the kind of thing that causes you to have no faith in the logical nature of the universe. Or in the use of chairs.

2) If you’ve kind of blocked the word “amputation” from your mind and been thinking LA LA LA LA CUT OFF FINGERTIP LA LA LA, when the doctor comes in and starts talking about “revision amputation” this and “revision amputation” that, you kind of want to puke at first. I wanted to beg the doctor to start saying, “When I go in and clean that up.” Because the word amputation is just not a word you want to actually hear a doctor say.



Image: https://brainzzzorgtfo.wordpress.com/2011/09/18/zombie-fingers/
Chris Zombie King

Week 4 of Parkinson’s Awareness

And this is the last week, folks, so breathe a deep sigh if you’re tired of reading about 1238f8c1e97790f9900e02bddf7ca22cParkinson’s and you have already reached “Unagi.”

V is for Variable. I like to think of Parkinson’s as a “boutique” disease. Everyone person’s Parkinson’s Disease is designed specifically for them; no one has the exact same set of symptoms and issues. It’s as if some (awful, nefarious, hateful) supernatural being said, “Hmmm, for this one, we’ll go heavy on tremor, pain, and loss of executive functioning. That one will get stiffness, constipation, apathy, and depression. The one over there? Let’s see. We’ll give them hypersensitivity to all PD meds, combined with slowness of movement, tremor, rigidity and hallucinations.” Yes, there’s a larger set of symptoms that most folks with PD experience some of the time, but on the day-to-day, people can have VASTLY different lived experiences with their Parkinson’s. Parkinson’s can also progress at different rates and with symptoms developing at disparate times.

Parkinson’s is likely to be an umbrella term. As we dig into genetic reasons for PD and learn more about which brain areas lead to which PD symptoms, we will probably be able to discuss specific PD sub-types and (HOPEFULLY) target them with specific therapies, including gene therapies.

W is for Walking and gait problems. Parkinson’s often leads to issues with walking, postural instability, and balance. People with PD may have a short, shuffling gait and be unable to lift their feet off the ground normally. When highly symptomatic, people may take very small, quick, shuffling steps, but lean their body precariously forward–like they’re trying to move faster, but their feet are unable to keep up–which can lead to falls. PD also affects balance, so people are more likely to trip, to fall when turning, to have difficulty on stairs. When walking, people with PD may “freeze,” like their feet are stuck to the floor, and be unable to get their feet to start moving again. This freezing is especially common when they are moving from one walking surface to another–like from a carpet to a tile, from one color carpet to another, across any sort of visible dividing line, or even across a threshold. Putting on music or a metronome (or even clicking your tongue in a rhythmic fashion) can help someone start moving again if they are frozen. (Isn’t that interesting?) Falls are one of the biggest risks in advanced Parkinson’s.

X is for eXam. When neurologists do a physical exam to assess someone for Parkinson’s, here are some of the things I’ve seen them do:
– Have the person walk, to see if one arm does not swing, to check for small, shuffling steps, to observe how fast they can walk.
– Watch the person tap their thumbs and forefingers together on both hands as quickly as possible. Do both sides move the same? Can they tap quickly?
– Ask the person to write. Is the writing small? Does it taper off through the length of a line?
– Can the person draw a spiral, from the outside to the center?
– Assess the person’s balance by pushing on their shoulders gently while they are standing. Do they stumble or stagger a step? Can they resist the push?

CAUTION: Unless you’re a neurologist, do not try to diagnose someone with Parkinson’s by doing these things. 🙂 I just think the physical exam is very interesting and I thought you might like to know what it’s like. If you or your loved one has PD and you’ve observed an assessment, what other things have you seen?

Y is for Yes.

Yes, if someone tells you they have Parkinson’s, it’s okay to talk about it and to ask questions. If they don’t want to talk, they’ll let you know! (But it’s weird when someone finds out and then is all HOW ABOUT THOSE METS, because they are super uncomfortable with the idea of disease and disability–feels like a rejection.)

Yes, it’s okay to ask me how I’m doing and how Gary’s doing–even better if you really want to know, if you want to know how my heart is feeling.

Yes, it’s also okay to NOT talk about Parkinson’s sometimes. You can help me compartmentalize and focus on other things.

Yes, it’s okay to complain about whatever’s going on in your life or bitch about some small partner-related annoyance. I don’t have the monopoly on life struggles. If you say, Wow, I wish X would do the dishes, so frustrated, I promise I won’t say, OH YEAH, WELL GARY HAS PARKINSON’S SO SHUT UP YOU LUCKY FOOL. 😉

Yes, it’s also okay ask us to do things, even if you’re not sure if we can. And it’s even better if you understand that we might need to change plans some of the time.

Yes. All if it is okay, as long as you approach me, Gary, life, and Parkinson’s with compassion and understanding.

Z is for Zzzzzz. Sometimes dealing with Parkinson’s is so wearying for both of us. Not just on a physical level, but on a mental and emotional level. I would love a day when I didn’t have to remember to remind Gary about his medications. A day when I didn’t have to consciously stay in the moment to prevent myself from worrying about the future. A day when I didn’t notice and monitor symptoms.

No matter how wearying it is for me, I know it is more wearying for Gary.

I wish we could just have a vacation from Parkinson’s. Like, just a day. A week. Too bad that’s not a thing. But it’s not, so. Day by day.

Last post for Parkinson’s Awareness Month: April may be over, but some of us live with the reality of PD every month, every week, every day, every hour. Thank you for supporting us by reading my posts, by trying to understand, by sending your love, by helping when you can.

Please share your own lives and struggles, so I can offer the same to you!

Be hopeful, my friends.  Life is short and we have not much time to brighten the lives of those around us. Be swift to love, make haste to be kind.

Week 3 of Parkinson’s Awareness

Hi folks, Continuing my April tradition of Parkinson’s Awareness. This year, by the letters. Check out my earlier blog posts to see the beginning of thparkinsons-awareness-month_1e alphabet.

O is for Obsessive, or impulse control disorders. Dopamine agonists are one class of drugs used to manage PD. Agonists act on dopamine receptors in the brain and take the place of dopamine (which the brain is no longer producing). They are prescribed instead of or in addition to the meds that provide dopamine (levodopa/carbidopa, discussed under L). For many people, they can be an effective part of treating the disease. However–and this is a HUGE however–they can lead to extreme impulse control disorders behaviors, such as compulsive gambling, sexual behaviors, shopping, eating, and other things. This major side effect happens in at least 1 in 7 people on a dopamine agonist–and perhaps much more, because it is often hidden from doctors and researchers, due to the shame surrounding the behaviors. Before this was recognized as a problem, there are stories of people literally spending their entire life savings and ending up hundreds of thousands of dollars in debt from gambling. This is an extremely serious problem and everyone who knows someone on an agonist should be vigilant in watching for signs of compulsive and destructive behavior.

Dopamine agonists can also lead to hallucinations and psychosis in some patients. Agonists are often used as a “first step” medication by some neurologists who want to delay starting levodopa/carbidopa therapy. (There’s no great research to suggest delaying levodopa/carbidopa therapy and our doctor is very vocal about using medications that work best to provide quality of life from the beginning–talk to your doctor.) They are also used to supplement levodopa/carbidopa to avoid side effects of higher levels of those meds. However, the compulsive behaviors MUST be monitored very closely–this is very serious.

P is for Pain. Like every other PD symptom, pain can vary greatly. Some people with PD may have little to no pain; for some, pain is their most debilitating symptom. PD can cause muscular/skeletal pain from tight and cramped muscles or bad posture, but it can also involve various types of neuropathic pain. Pain can be invisible, so many doctors don’t treat it seriously enough. Living with chronic pain is exhausting and depressing. It can contribute to a lack of movement and exercise, which in turn causes more muscular/postural issues and worsens the pain in a vicious cycle.

Q is for Questions. Ask me any of your questions about Parkinson’s, Young Onset Parkinson’s, or being a caregiver/carepartner! I will answer all questions.  Tweet me @sessiesarah or post on my FB: Facebook.com/sarahestevens.author

R is for Rage. I feel rage at the universe because Gary has Parkinson’s and my dad has Parkinson’s and Gary’s dad has Parkinson’s. Does EVERYONE HAVE TO HAVE Parkinson’s? I feel rage toward people who don’t understand, who look askance at Gary or treat him differently. I feel rage at people who don’t understand how hard it is, how much this impacts our life, who take their able-bodiedness and the able-bodiedness of their partners for granted. I feel rage at Gary when he forgets to take his medicine or when I think he’s not taking care of himself. I feel rage at myself for feeling rage and for not remembering that it could be much, much worse. I feel rage that scientists haven’t yet managed to find better treatments or a cure. I feel rage when our health insurance refuses to pay for a drug that could help him. I feel rage about the things we have lost.

I don’t like rage. I’m not good at allowing myself to feel it. I’m even worse at expressing it. I swallow it whole and allow it to become sorrow
and depression and grief.

Sometimes it’s good just to say it. I am full of rage that Gary has Parkinson’s. It’s not fair. It is so not fair.

S is for alpha-Synuclein, a protein in the brain that clumps to form Lewy bodies. Researchers are focusing on learning more about alpha-synuclein, how it clumps, why it clumps, where it clumps, what the effects are. The discovery of this protein and its role in Lewy bodies has helped understand the wide variety of PD symptoms and that PD affects many areas of the central nervous system, not just one area. Studies are looking at the genes that cause alpha-synuclein aggregation, as well as ways to prevent clumping or even “vaccinate” against clumping. We’ll be learning more about alpha-synuclein, but right now, we know that it’s a major cause of PD, but we don’t know what to do about it.

T is for Tremor, of course. Tremor is the first symptom people think of when they think about Parkinson’s disease. It’s often one of the early symptoms that lead people to get a diagnosis. Most people begin with a tremor on one side, which then spreads to both sides as the disease progresses. Tremors usually start in the thumb/forefinger or in the pinky finger, but some people notice it first in their foot or other places. External tremors are visible to other people, but PD also causes internal tremors, which the person can feel, but are invisible to others. Any muscle can develop trem
or. As PD progresses, tremor affects both sides, all four limbs, and can affect muscles in the face and other places. Early in the disease, tremors are “resting tremors” and actually stop when the person grabs an object or does something with the affect hand. Later in the disease and when tremors are back, tremors can occur during rest and during use.

U is for yoU. How can you help people with Parkinson’s?

Cultivate compassion. When you see someone with symptoms/abnormal behavior/something you’re not sure about, consider they may have a disease–instead of jumping to the conclusion they are on drugs, coming off drugs, are “drug-seeking,” are “faking it” or exaggerating to be on disability. Realize if you’re in a public situation with someone who has a disability, you are likely seeing them on their BEST day, not their worst.

Love and support the people you know who struggle with disease–and their care partners.

Consider donating to research: https://www.michaeljfox.org/get-involved/donation2.php

Consider signing up for clinical trials as a healthy/control volunteer: https://clinicalconnection.com/study-participant/join

It takes a village. Thanks for being part of our village.


Week 2 of Parkinson’s Awareness

Here’s more of Parkinson’s by the alphabet! April is PD Awareness Month, so I’m doing my part to share information about the disease, its symptoms, and its treatment. parkinsons

H is for History. In 1817, James Parkinson, a British apothecary published a treatise called, “An Essay on the Shaking Palsy.” The name Parkinson’s Disease caught on in the 1860s. Since the 1990s, researchers have isolated several genetic components of Parkinson’s. Not all PD seems genetic; not all pretty-obviously-genetic PD has any of the already-discovered genetic components. PD is most likely an umbrella term and we will continue to discover more. The hope is that we may be able to develop targeted treatments for certain genetic variations.

I is for Insomnia. Parkinson’s can lead to all sorts of sleep disorders–insomnia, excessive daytime sleepiness, and/or REM sleep behavior disorder. The latter means that people with PD may act out their dreams by punching, kicking, talking, yelling, and otherwise moving in their sleep.

J is for Michael J. Fox (kind of–J is hard). His foundation spends 88% of every dollar directly to PD research and he’s been a great spokesperson for PD. Hopeful some of the research will pan out for more treatments and delay of disease progression!

K is for Karegiver. (I know. It’s not. Deal with it.) Gary and I usually use the term care partner, because sounds more like a give-and-take and less one-way. I don’t have PD, yet I live with it everyday. When I call to talk to Gary, I can judge what type of day he’s having from the sound of his voice within the first 20 seconds–how symptomatic he is, etc. I understand his disease and symptoms better than anyone else who doesn’t live inside his body. I remind him to take meds. On bad days, I do a lot more around the house and for the family than either of us wish I had to–and I try to do so with a willing and open heart, though that’s not always successful. We cope with all the emotions together. We plan for contingencies. We figure out the best way to address new symptoms and challenges. We process the fact that there will always be new symptoms and challenges–our lives together will need to continually adapt so we can snatch the most joy possible. I never imagined dealing with an incurable, degenerative neurological disorder (ain’t that a grand phrase?), yet sometimes life means we have to step up and find ways to deal with the unexpected. On bad days, it’s exhausting and overwhelming and my anxiety can run away with me. On good days, there’s a pureness and beauty to the fact that we hold tight to love in the midst of struggle.

L is for Levodopa. Levodopa is the main “gold standard” drug treatment for PD. It converts to dopamine in the brain, which allows your brain to give messages to your muscles (and other things). If you’re taking levodopa, you need to take carbidopa with it–carbidopa prevents the levodopa from being broken down before it reaches the brain. The main PD medicine is a combination of levodopa and carbidopa in various proportions and strengths. You may have heard of “Sinemet” or “Rytary,” which are both different types of levo/carbi-dopa.

M is for Mental Health. PD causes a host of mental health issues such as depression, anxiety, and apathy. This isn’t “I’m depressed because I’m sad about having PD” kind of thing or “I’m worried about what will happen with my PD”–this is depression and anxiety as primary symptoms of the disease itself, due to the physical changes in the brain. Same with apathy, which is like depression’s less-understood cousin. For some PD patients, the mental health symptoms can be the most severe symptoms of all. They can also be harder for caregivers to understand and cope with. Many folks with PD take anti-depressants and/or anti-anxiety medications. ECT, electroconvulsive therapy or “shock therapy,” is also a particularly efficacious treatment for depression related to PD. Today’s ECT isn’t like the images you may have in your head from “One Flew Over the Cuckoo’s Nest,” though it is nevertheless scary to think about one’s brain being shocked until it causes a seizure. One doctor likened it to a hard reboot of a computer, resetting the brain to its normal equilibrium. There are real risks with ECT, most notably memory issues, but it’s something that doctors consider depending on the severity of PD-related depression.

N is for Neurologist. If you have PD, you should see a Movement Disorder Specialist, not just any neurologist. An MDS will have the best ability to help manage symptoms and understand the disease. If possible, go to a Parkinson’s Foundation Center for Excellence. We travel 2.5 hrs each way to see an MDS at Vanderbilt and it’s worth it. Many people–especially younger patients–wait a long time for an accurate diagnosis, since even many neurologists may not think about Young Onset Parkinson’s as a first option. If you have some of the early warning signs I discussed under E, then do consider finding an MDS from the beginning. You’ll eventually need a team of doctors dealing with various aspects of the disease, but the MDS is the most important. Find a doctor who treats you with respect and caring.

Week One – Parkinson’s Awareness

0f9c46d6310b12c57505fbe41c04ae17Hi folks! April is PD Awareness Month, so I’m using my blog to re-cap some of the other social media postings I’ve done on PD so far.

Let me start simple: Parkinson’s doesn’t just affect old people. About 2% of the folks with PD are under the age of 40. If you’re diagnosed under the age of 50-55 (varies by doctor and by research study), it’s considered Young Onset PD. My husband Gary was diagnosed at 30, about 5.5 years ago.

A is for Akinesia, the loss of voluntary muscle movement. With PD, muscles become stiff and difficult to move. Legs, neck, and shoulder muscles are often the first affected. You’ll notice most people with PD lose their natural “arm swing” when walking–one (or both) arms will hang stiffly down at their side instead of moving with the rest of the body. When akinesia affects the face, someone with PD can have a “masked” appearance and it can be hard to read someone’s tone–are they mad? Was that sarcasm? Was that a joke? Who can tell!

B is for Bradykinesia, slowness of movement. If you see someone with PD moving very, very, very, very slowly, thinking slowly, talking slowly, that’s bradykinesia. It can take someone whole minutes to stand up out of a chair–you can practically watch the steps. Shift weight. Shift weight more, move hands to brace self. Close fingers on armrests, put weight on toes, lever up slowly so slowly, straighten legs, straighten back, etc. That’s bradykinesia.

C is for Cognitive. PD isn’t just a movement disorder; it also affects cognition for many people. People with PD may experience issues with executive functioning, memory, slow thinking, difficulty finding words, etc. Executive functioning includes attention/focus, organizing tasks and behaviors, decision-making, planning and prioritizing, impulse control, and working memory. One common problem is that people with PD can have a hard time remembering to take their own medication, which then leads to a symptom spiral and even more difficulties. (This is something Gary and I struggle with; we’ve gone through many systems to try to make it easier for him to take his meds on time.)

D is for Dyskinesia, involuntary body movements (often repetitive) that can look like twisting, dancing, swinging, or rocking. Dyskinesia happens when a person with PD has medication levels that are too high. It’s a medication side effect, not a primary symptom of PD. The “gold standard” treatment for PD involves a combination of levodopa/carbidopa to increase dopamine levels in the brain. Dopamine is the compound necessary for the brain to send messages to the muscles and tell them to actually move. PD kills dopamine-producing cells. Because of the ways medication is absorbed in the body, levels of dopamine ebb and flow with medication. When they are too low, you have things like akinesia and bradykinesia (which I discussed for A and B). When they are too high, you have things like dystonia. If you remember the picture of Mohammad Ali lighting the Olympic torch with his arm swinging back and forth, back and forth, that was most likely dyskinesia. If you watched the footage of Michael J. Fox at the Oscars, you will notice he has his hands in his pockets and is kind of shifting his weight from side to side. I believe that’s most likely his way of controlling the appearance of dyskinesia.

D is ALSO for Dystonia, which is rigid contortions or cramps that can almost look like convulsions. This happens when levels of dopamine are too LOW. Dystonia can be full-body, or can affect just certain muscles like the foot. It looks super painful, but Gary says it isn’t necessarily–but can be.

E is for Early Warning Signs. Don’t freak yourself out, but if you know someone with multiple early warning signs of PD, get them to check it out with a neurologist, preferably a movement disorder specialist. Changes in handwriting (smaller or “micrographic,” messier, starting big and trailing smaller across a line), loss of sense of smell, tremor in finger/thumb/lip/chin, “frozen shoulder” or shoulder pain, arm not swinging normally with walk, changes in voice (softer, less range of tone, less emotional expression), trouble sleeping, trouble moving, constipation, loss of facial expression, hunched-over posture. When we went to the neurologist for the first time, Gary brought his journal and the doctor said he could have diagnosed Gary from the past five year’s changes in handwriting alone. (The doctor didn’t, of course; did a full diagnostic exam.)

F is for Fatigue. PD brings with it cellular-level, bone-deep fatigue, because you are having to work a million times harder to do EVERYTHING in life. It’s hard to understand how someone can be so fatigued simple tasks like taking a shower or doing the dishes are overwhelming, but that’s the kind of crushing fatigue we’re talking about. They say exercise helps with fatigue…if you can overcome the fatigue enough to even try. Vicious cycle.

G is for Gary. PD sucks and YOPD may suck even more, though I suppose that’s just my perspective. To quote a t-shirt I just saw, there aren’t enough middle fingers for this disease. PD occupies way too much space in our lives and causes a great deal of stress and grief and extra work. And yet. And yet. I would rather be with Gary on his worst days than with anyone else on their best days. He is kind, smart, sexy, funny, supportive, a great father, a great partner. He is quirky as hell in all the right ways. He loves me for all that I am, even the difficult parts. There are moments his PD makes our partnership difficult, but always because of the disease, not because of who Gary is. He withstands awful symptoms without complaining and he never makes others feel guilty for being healthy or for being able to do more than he can. He is more than his disease. I will not let PD steal the joy from our lives.


Parkinson’s, Oscars, and Willful Ignorance

And now for something completely different.

You may not know that my husband Gary has Young Onset Parkinson’s Disease. He was diagnosed at the age of 30, just like Michael J. Fox, but without the millions of dollars.*

MJF was on the Oscar’s the other night. I didn’t watch it live, but saw several Facebook posts where people mentioned how great he looks. One person said that she wouldn’t have any idea he has Parkinson’s, if she didn’t already know. Lots of people commented on how happy they were that he was doing so well. Everyone seemed to think he looked great and couldn’t believe how well he functioned.

482cba07ffd69300dec4dd253e94b374I went and watched the clip, of course: Oscar clip.

He does look good. He’s 25+ years out from diagnosis, and I’m so pleased that he’s able to do things like be on the Oscar’s.

At the same time, I watch him and see all the signs and symptoms of PD. Notice how he starts on the other side of the Delorean and does not actually get out of the car–he starts standing behind and out of view, because getting up and out of the car would be so difficult. Notice how his left leg doesn’t bend, how it drags when he walks. Notice his frozen left shoulder and lack of arm swing. Notice how he keeps his hands in his pockets, so he won’t display any tremor or dyskinesia. (Dyskinesia refers to the involuntary muscle movements caused by high levels of PD medications. It can sometimes look like swaying or swinging or a type of contortions.) Notice the lack of affect in his voice and his difficulty articulating.

I mean none of this to criticize MJF. Rather, I point out how much easier it is to say, “Oh, he looks great” and ignore the reality of PD. We’d like to pretend we don’t see the symptoms, that everything is fine, that modern medicine is miraculous. (It is miraculous–thank the gods for modern medicine. And yet.) We’d like to pretend that PD is nothing more than a bit of a hand tremor. We’d like to ignore the lived reality of it, because it’s easier not to know.

I know the cost he pays for this kind of appearance. I imagine how carefully they arranged his medications to make sure he was optimally dosed with levodopa/carbidopa for this precise moment on stage. Not too much. Not too little. How much antidepressant? How much anti-anxiety meds? How much pain killer or other stimulants?

Those of us who live with Parkinson’s know its symptoms encompass all areas of life and can’t be shrugged away so easily with a glossy coating of Oscar gold.

I hope MJF is doing well. I hope we continue to find new therapies and medicines. I hope.

I hope.


*That’s a joke I make often, but it’s also a statement full of rue. Millions of dollars help. With millions of dollars, you can get the best therapies, the best medicines, the best home health aid. With millions of dollars, I would be able to stay home and make sure Gary takes all his meds on time. Make sure he gets to his doctor’s appointments. Make more doctors appointments, for things like regular physical therapy. Join the Y and get him to the PD Rock Steady boxing class or other therapies on a regular basis. But. We don’t have millions of dollars, so we do the best we can.