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.