Every April marks National Parkinson’s Awareness Month in the United States. As the name suggests, this annual event is a chance to raise awareness about Parkinson’s disease by opening an honest dialogue. If you want to find out more, we’re here to help by telling you what you should know about the annual campaign and how you can play your part.
What Is National Parkinson’s Awareness Month?
Launched by the Parkinson’s Foundation, National Parkinson’s Awareness Month is an annual campaign that aims to raise awareness of the progressive neurological condition that affects an estimated one million Americans.
Although there is no known cure for Parkinson’s disease, the foundation helps advance research that could lead to a cure. It also aims to make it easier for people to live with the condition by improving the overall quality of care.
National Parkinson’s Awareness Month 2020
The theme of Parkinson’s Awareness Month 2020 is “Plan for Parkinson’s Disease” (#Plan4PD). Putting a plan in place helps people prepare for the obstacles that lie ahead as the condition develops. So, this year, the Parkinson’s Foundation is asking people living with the condition to put actionable steps in place to improve their lives, and also to share their stories.
If you or a loved one has a personal Parkison’s disease story, you can share your story on social media using the #Plan4PD hashtag. This way, Parkinson’s Foundation staff can collate the relevant messages as well as re-share them.
You can find other ways to get involved by checking out the foundation’s calendar of activities that includes an activity for every day of the month in April 2020. These range from learning more about genetics to writing a letter to the newspapers (using a provided template).
Ways to Participate in National Parkinson’s Awareness Month
Let’s dig deeper into what you can do to participate in National Parkinson’s Awareness Month. However much time and energy you can spare, there’s bound to be a way for you to help raise awareness. In addition to what is highlighted on the Parkinson’s Foundation website, here we offer some more ideas:
1. Reach Out to Someone with Parkinson’s Disease
Do you know someone who’s living with Parkinson’s disease? If so, now could be the perfect time to reach out to them. Learning about their experiences and understanding their point of view are great places to start, and you can see if there’s anything you can do to help. Be open to any suggestions because your support could mean everything!
2. Set Up an Online Funding Platform
You can support the Parkinson’s Foundation by donating online, and you can encourage others to donate by setting up a funding page. Telling someone’s story (who has the disease) is a good way to seek support and help the foundation.
3. Consider Volunteering with the Parkinson’s Foundation
If you’ve got some spare time, you could always volunteer with the Parkinson’s Foundation. The organization has a wide range of activities and opportunities that you can help with, whatever your skill level. Get started by filling out a form on the organization’s website.
4. Share Helpful Information Online
Get involved in the campaign’s conversation by following hashtag #Plan4PD to see what people are saying about this year’s event. Get involved and start sharing helpful information online. Need ideas? You could highlight some important research, share a personal story, or simply show your support.
What Is Parkinson’s Disease?
Let’s take a step back to talk about the basics.
Parkinson’s disease is a progressive neurological condition, which means problems with people’s brains get worse over time. The condition causes dopamine-producing brain cells to die.
Currently, there is no cure for this illness. Those living with Parkinson’s will need to learn how to live with it, with the aid of treatments and therapies. However, it’s important to note that there is ongoing research into Parkinson’s disease, therefore there could be a cure for this condition in the future.
Since there are millions of people around the world now living with this condition, it’s important to raise awareness and speak out about it. The more we open a dialog here, the more people will start to understand the condition.
Parkinson’s Disease Stages
Since Parkinson’s disease is progressive, it can be categorized into stages of severity. Although the condition can affect individuals differently, the Parkinson’s Foundation suggests that these five stages are typical:
Stage One
People with Parkinson’s will typically experience mild symptoms during the first stage, such as tremors and minor movement changes. These could be changes in posture, walking, or facial expressions.
Stage Two
As the disease worsens, so do its symptoms during the second stage. More significant tremors and movement problems will affect both sides of the body. The sufferer may still be capable of living alone but daily tasks will become more difficult over time.
Stage Three
During the third stage, sufferers will move more slowly, and will increasingly experience loss-of-balance, so falls will become frequent. Extra assistance could be required at home for things such as eating and dressing.
Stage Four
Stage four is the second-worst stage, during which the sufferer will be able to do less and less for themselves. A carer will be required because anyone at this stage can’t conceivably live alone.
Stage Five
The most advanced phase of Parkinson’s disease is known as “stage five.” Now it’s hard to stand or walk at all, so most sufferers will need a wheelchair or will have to stay in bed. Hallucinations and delusions can also be common, and round-the-clock care will be required.
How to Check for Parkinson’s Disease
Now that you understand more about Parkinson’s disease, you’ll want to know if you’re likely to develop the disease or if you already have it. You can do these two things:
- Take a DNA test to see if you have a genetic predisposition to the disease.
- Understand the early signs of the disease.
Let’s look at each of these, in turn.
Check Your Genetic Predisposition with a DNA Test Kit
Early detection is important, and this can start way before you see any signs. Your DNA can tell you if you are predisposed to developing Parkinson’s. Keep in mind that this doesn’t mean you’ll definitely develop the disease because environmental factors can also play a part. We’ve found the best DNA tests to tell you if you could develop this condition.
23andMe: 23andMe’s comparable Health + Ancestry service also checks your predispositions to 13 common DNA-related diseases, including Parkinson’s. The LRRK2 and GBA gene variants that are tested for Parkison’s disease are relevant to people of European, Ashkenazi Jewish, North African Berber descent. You also get insights into whether you are a carrier for 44 congenital conditions that could be passed on to your children.
TellmeGen: The comprehensive DNA testing kit from tellmeGen covers a variety of genetic illnesses, including Parkinson’s disease. Although this is scientific-sounding, for comparison purposes it’s important to note that more genes or regions are studied than many competitors, including: FAM47E, MCCC1, ADH1C, 10q24.32, 15q24.3, and 4q22.1.
Invitae: Whereas the previous tests are generic panels for a range of hereditary diseases including Parkison’s, Invitae’s Hereditary Parkinson’s Disease & Parkinsonism Panel specifically analyzes 18 different genes that are specifically associated with the condition. The expert-backed results identify your risk factor and the relative risk to your relatives too. Unlike most DNA tests, this one is described as “diagnostic” and has to be ordered by a healthcare provider.
Seeing the Parkinson’s Disease Symptoms
DNA tests can only tell you if you are likely (but not certain) to develop a disease such as Parkinson’s. To be sure, you also need to see the early signs or symptoms of Parkinson’s that may be developing, so the Parkinson’s Foundation suggests the following signs to look out for. (Just keep in mind that these typical Parkinson’s symptoms don’t mean that you’ll definitely get the disease.)
Small Handwriting
Pay attention to any significant changes in your handwriting style. If your writing becomes smaller than it was before, or your letters get closer together, it could be an early symptom of Parkinson’s disease.
Tremors
If you experience shakes or tremors, even slight shaking when you’re resting, it could be a symptom of Parkinson’s disease. There could be several reasons for this, but if you’re concerned it could be an early sign of Parkinson’s, consult your doctor.
No Sense of Smell
Although it can affect all senses, Parkinson’s particularly affects your sense of smell, and you might have trouble smelling certain foods, such as licorice, bananas, or pickles. You could lose your sense of smell when you have a cold, but it should come back. If it doesn’t, it might be time to talk to your doctor about Parkinson’s disease treatment.
Sleeping Problems
If you find it hard to fall asleep, and you toss and turn during the night, there could be many different causes. However, sudden movements in bed could be a sign of Parkinson’s, so seek advice if it becomes a regular occurrence.
Walking Problems
Walking is a particular problem for Parkinson’s disease sufferers. Your legs might feel stiffer than usual for no reason, and you might experience pain or discomfort in your shoulders, back, or hips. If you find that you have problems walking, you may need to speak to a medical professional and consider the possibility of Parkinson’s disease or other causes.
Constipation
Parkinson’s disease can also affect your bowels and digestive system. Trouble using the toilet could have many causes, but don’t discount the possibility of Parkison’s until it’s been discounted by your doctor.
Dizziness or Fainting
Do you ever get dizzy when you stand up? Everyone experiences this from time to time when they stand up suddenly, but dizziness and even fainting more regularly could be a cause for concern, so speak to an expert as soon as you can.
Facial Masking
Has anyone told you that you look angry or upset when you’re not? The phenomenon of facial masking can occur as a consequence of Parkison’s disease (but there could be other causes, regardless of your mood or mental state). Parkinson’s medication might help.
The Bottom Line on Parkinson’s
National Parkinson’s Awareness Month is an ideal time to start:
- Talking about Parkinson’s disease
- Getting tested for your genetic predisposition
- Looking out for the early signs and symptoms
That said, whenever you read this could be a good time to do these things, even if you’ve missed the official awareness month.
More Resources
Visit these websites for more information about the issues discussed in this article:
- Parkinson’s Awareness Month: https://www.parkinson.org/parkinsons-awareness-month
- Parkinson’s Foundation: https://www.parkinson.org/
- HealthTalk: https://healthtalk.org/parkinsons-disease/overview
- World Health Organization: https://www.who.int/mental_health/neurology/neurodiso
