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.

I’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!

OR IS THERE?

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

And this is the last week, folks, so breathe a deep sigh if you’re tired of reading about Parkinson’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.

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 the 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.

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. 

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.

Hi 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.

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.

I 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.