A common piece of advice to make the most out of time with your Parkinson's physician is to bring a list of your top concerns and questions. But what should that look like? How much information should you include?
Jim Force, 71, from Alta Loma, California was diagnosed with Parkinson's disease five years ago and had a stroke in 2017. Given handwriting challenges, Force jots down issues on his computer as they occur then selects what to print and bring to his next doctor appointment. Below he shares a list that he brought to a recent visit.
Movement disorder specialist Rachel Dolhun, MD, Vice President of Medical Communications at The Michael J. Fox Foundation reviewed Force's list. "These are the kinds of things your doctor wants to hear: how you're doing overall, what symptoms are new or getting worse, and how they impact your daily life," she said. "You and your doctor can work together to manage the disease and help you get the most out of each day."
Jim Force's Appointment Log
Editor's Note: Each person's medications and how they take them are different. Work with your doctor to find the right drugs and timing to control your symptoms.
- Still take four pills of levodopa-carbidopa (Sinemet): 6 and 10 am, and 2 and 6 pm
- Under stress or when feel an "off" period coming on, I take a half pill.
- Some days, I need more "on" around mid-day, so I will take half pills not to exceed 4½ pills a day.
List your symptoms in order of most bothersome/concerning so you get to cover the most important.
- Some days are quite good. Some are shaky. Some are good for hours and then "off" for hours.
- "On" and "off" periods are more definitive now. It can be hard to get up from a chair or sofa or to walk any distance.
- Had first total freeze on October 15 while walking to our apartment.
- New symptom of "stutter stepping" where I take rapid and tiny steps. Can overcome by forcing myself to walk "heel, toe, heel, toe." I use a walker around the house.
- Sudden, uncontrollable crying. I believe it is tied to "nostalgic" thoughts. If I push these thoughts out of my mind, I can stop the unwanted weeping.
- Consistent indigestion
- Tingling sensation. After sleeping for several hours, my upper arms and/or legs have the same sensation as when your hand falls asleep.
Having a list of questions can direct the conversation and ensure your doctor addresses your top concerns.
- If I move to six full pills a day what are the consequences? Hallucinations? More shaking?
- Does stutter stepping lead to a wheelchair?
- Can I go to physical therapy to learn exercises for my legs and walking?
- I've heard of the new therapy Inbrija for "off" periods. Can you tell me more? Would it be an option for me?