Preparing For Your Doctor Visit
Making the most of every appointment with your neurologist is critical since we only see them several times a year. Also, seeing a neurologist with a movement disorders specialist (MDS) designation can make a real difference.
They usually have an additional 2-year fellowship specifically in movement disorders. This gives them special training in medications and therapies.
Bring someone with you
So, how to prepare? Rob, my husband with Parkinson's disease (PD), and I usually start a list of topics to discuss with his MDS about a week or 2 before our appointment. I say “our” appointment because Rob has invited me to his doctor's appointments since we first started dating.
Having your caregiver or spouse attend the appointments is crucial. Parkinson’s is a "team sport" so to speak. What I mean is, if you have Parkinson’s, it impacts everyone in your family. They deserve to know what is going on with you because it affects them, as well.
Topics to discuss
On our list of topics might be the following:
Grief, Sadness, or Depression: Feelings like "What’s the point?". Having no energy. Wanting just to sleep or watch TV. These might be signs of depression and there are some wonderful new drugs out there to help with this. No need to suffer! It took several tries to find the perfect fit for my husband Rob, but it’s made such a difference in our lives.
Anxiety: This can feel like constantly worrying about the past or future or something else. Don’t let this ruin your life. Again, there are drugs for this.
Apathy: Apathy is very common with PD. It might feel like a complete loss of interest in life. Exercise is a one of the best ways to alleviate apathy and depression.
Movement Issues: Might be stiffness, off periods, falls, dizziness, dyskinesias. Rob experiences dyskinesia daily, but a new medication is helping a lot. He also used medical cannabis and it helps him a lot.
Sleep Issues: Are you waking up too often? Can’t get back to sleep? Have REM Sleep Behavior Disorder (thrashing and acting out dreams)? Urinary issues?
Medications: Are they working for you? Do you need a new regimen of meds to have less off times? Are you freezing or falling? Meds should always be a topic of conversation.
Quality of Life Issues: What would you like to do that you can’t do now? Is there something the doctor can give you to help get this back in your life? Ask!
Tracking your symptoms
We also have used a chart that shows the hours of the day on 1 axis and on the top axis, it shows meds, medical cannabis and dyskinesia. We track for a week or 2 when Rob takes his meds, when dyskinesia kicks in, and when he takes medical cannabis and how soon it works or not to alleviate his symptoms.
You can make a similar chart to track whatever symptoms are bothering you and how your meds are helping or not. The more information the doctor has to work with the better. We have even used videos of Rob’s dyskinesia to show exactly how it is showing up in his body.
Go in prepared with your list and don’t leave till you get answers! Travel your PD journey well, my friend.
Do you or a loved one experience micrographia (small handwriting)?