There are many things you don’t want to hear when you take your loved one to the doctor. For most people, a Parkinson’s diagnosis is probably in the top ten. If you’ve seen anyone in the later stages of the disease, it can be very difficult to imagine your parent experiencing those same symptoms. And while a Parkinson’s diagnosis is certainly devastating, there are some misconceptions about the disease that may cause unnecessary anxiety.
The important thing to remember is that although there is no cure, Parkinson’s is not fatal, and good quality of life is still very possible. It’s all about symptom management and making sure you and your loved one have the right support in place. In this article, we’ll discuss three things you might not know about Parkinson’s that will help you better manage your expectations should your loved one be diagnosed.
Your loved one may not experience the physical/movement-based symptoms like tremor
When you think of Parkinson’s, you likely think of tremor. But tremor is not a definitive symptom, meaning that if you have a tremor, you may not necessarily have Parkinson’s. And conversely, you may have Parkinson’s without having a tremor as a symptom. And while tremor and other visible, physical symptoms are the most commonly known, there are actually several non-movement symptoms that can occur (via Parkinson’s Foundation):
- Cognitive changes: problems with attention, planning, language, memory or even dementia
- Early satiety: the feeling of fullness after eating small amounts
- Excessive sweating, often when wearing off medications
- Hallucinations and delusions
- Lightheadedness (orthostatic hypotension): drop in blood pressure when standing
- Mood disorders, such as depression, anxiety, apathy, and irritability
- Sexual problems, such as erectile dysfunction
- Sleep disorders, such as insomnia, excessive daytime sleepiness (EDS), REM sleep behavior disorder (RBD), vivid dreams, Restless Legs Syndrome (RLS)
- Urinary urgency, frequency, and incontinence
- Vision problems, especially when attempting to read items up close
- Weight loss
Another interesting fact: Some of the early symptoms of Parkinson’s are a bit unusual. Small handwriting, constipation, loss of smell, and excessive dandruff are all on the list of possible early symptoms of the disease.
There are many ways to treat symptoms beyond just taking medication
Another common misconception is that medication is the only way to mitigate the symptoms of Parkinson’s. In fact, one of the more unlikely ways to help reduce symptoms is regular exercise. According to the Parkinson’s Foundation:
“Research has shown that exercise can improve gait, balance, tremor, flexibility, grip strength, and motor coordination. So far, studies have shown:
- Engaging in any level of physical activity is beneficial, rather than being sedentary — this is associated with improved motor symptoms.
- For people with mild to moderate PD, targeted exercises can address specific symptoms. For example, aerobic exercise improves fitness, walking exercises assist in gait, resistance training strengthens muscles. One study showed that twice-a-week tango dancing classes helped people with PD improve motor symptoms, balance, and walking speed.
- Exercise may also improve cognition, depression, and fatigue
- One study showed that people with PD who exercised regularly for 2.5 hours a week had a smaller decline in mobility and quality of life over two years.”
Exercise isn’t the only option for reducing symptoms. There are plenty of other things you can try to see what combination works best for your loved one:
- Alternative treatments/surgeries like deep brain stimulation
- Supportive therapies (pet, massage, meditation)
- Eating a healthy diet
There’s no one-size-fits-all solution and each case is unique, so even if the first options you try aren’t effective, don’t give up! Additionally, new clinical trials are popping up all the time as researchers continue to learn more about the disease and find new ways to treat it. Your parent or loved one may be eligible to participate in one of these trials.
If your loved one with Parkinson’s needs in-home care, a non-medical caregiver is a great option
Much of what professional caregivers do as part of their regular duties can be a huge help to those who have Parkinson’s but want to remain in their homes. Medication reminders, rides to doctor’s appointments, shopping & healthy meal prep, being there during exercise, and housekeeping to help keep the home safe are all in a day’s work for a caregiver!
Additionally, some caregivers are specifically trained to help Parkinson’s patients. In our Parkinson’s specialty program, caregivers learn how the disease works and progresses, how to address the common challenges associated with it, and how to assess and identify changing needs as time goes on. They also learn recommended diet and exercise guidelines for Parkinson’s patients.
Perhaps one of the most important things a caregiver can help with is companionship and emotional support. Living with an incurable disease can take a toll on mental health, so having a caregiver to provide consistent support in that area can make a big difference.
And keep in mind that even if you don’t need a caregiver on a consistent basis, you can always use an agency to help you with respite care. Everyone needs a break from time to time, so respite care can be a great option to try.
It can be devastating to receive a Parkinson’s diagnosis, but there is hope! Your loved one can still have a great quality of life. Experiment with different treatment options and medications (in partnership with the doctor of course!) to find the right fit. And add a professional caregiver – either on a consistent basis or just for respite care – to your care team to help you manage the situation.
There are also many support groups and organizations that can help both you as the family caregiver and your parent. And continue to educate yourself and stay up to date with the latest research and developments. With the right attitude and plan, you can help your parent or loved one live the best life they can while staying independent in their home.
Are you a family caregiver whose loved one has Parkinson’s Disease? Check out this related post: Coping with Parkinson’s: Family Caregiver Stories
- Neuroprotective Benefits of Exercise – Parkinson’s Foundation
- Non-movement symptoms – Parkinson’s Foundation
- 10 Interesting Facts About Parkinson’s – Parkinson’s Foundation
- Parkinson’s Disease – Mayo Clinic