Educating Others about Parkinson’s

Many of your family and friends may only see you and your loved one with Parkinson’s once or twice a year. These short visits may make it difficult for them to remember or understand how you and your loved one cope daily with Parkinson’s. You may find yourself being a teacher - sharing your Parkinson’s coping strategies with these caring people. A little education can go a long way in making things easier for all parties. Here’s just a few items that I find need repeating to help loved ones understand Parkinson’s better.

It’s not just the tremor

Tremor is just one of the many outward symptoms of Parkinson’s. However, there are a lot of symptoms that cannot be seen: digestive issues, trouble swallowing, slowing of processing thoughts or responses, softer voice, loss of smell or taste, being too hot or cold, facial masking, and the list goes on and on. Share the symptoms that may effect any events during a stay or visit.

Don’t forget the side effects from the medications

Side effects from medications treating Parkinson’s can sometimes be worse than the disease itself! Each person’s body will process the medications differently. For example, dyskinesias (involuntary movements) can be so intense for some people that they get tired from moving for long periods of time. Dyskinesias are a side effect, not a result of Parkinson’s.

Not every day with Parkinson’s is the same

Living with Parkinson’s is a roller coaster ride. Some days the symptoms are high, some days they are low. There’s no way to predict how the symptoms of the disease will present themselves, nor the side effects from the medications. It really is a moment by moment disease. So, please be prepared that plans may shift, need alteration, or may have to be postponed. Please try to understand that this is not intentional - it’s just part of living with the unpredictable nature of Parkinson’s.

No two people with Parkinson’s are exactly alike!

Just because you’ve met one person with Parkinson’s doesn’t mean you understand Parkinson’s. I’ve lived with someone with Parkinson’s for over twenty years, and I learn something new every day!

Timing of medications and meals can be tricky

For some of those living with Parkinson’s, eating a large, protein-laden meal can have consequences. Protein can interrupt the processing and absorption of the synthetic dopamine (levodopa) in the digestive tract. The more that the protein interferes with the absorption, the less levodopa will be absorbed into the bloodstream and sent to the brain. In plain English, protein can cause more “off times” which can cause some people to have more movement issues (i.e. hard to walk, slowness of movement, muscle cramping, etc.).

Communication is so important

I cannot stress enough the importance of open communication! There are many people that think they need to hide everything about their daily life because it is a burden on their loved ones. Open a dialogue with your loved ones. You may find that they want to know more about your lives with Parkinson’s, so they can help. Communication also means sharing your love and appreciation for your loved ones. Tell them every day how much you appreciate them and their support.

There’s so much to share about living with Parkinson’s. Opening the door to discussion and sharing can be a first step in making everyone feel more comfortable, dispel misunderstandings, and explain the unknown about Parkinson’s.