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.

#PDAwarenessMonth

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