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.
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.
Sarah E. Stevens 