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Getting a diagnosis of Parkinson’s can be confusing, upsetting and even scary. I got the diagnosis six years ago and have learned a whole lot about the disease since that time. You can find vast resources on the internet to help answer questions about Parkinson’s, but not everyone has access to or interest in computers. Also,, some doctors may not give you these tips. So, I’m writing these tips based on my research, discussions with neurologists, conversation with other people with Parkinson’s, and from my own personal experience.

Tips that might help you in that first year or two:
1.    Exercise is important for everyone, but particularly for those of us with Parkinson’s. The disease typically causes our bodies to slow down, stiffen up and plays havoc with our balance. My hope and belief (and the medical world verifies) is that exercising will keep me upright and moving longer than without it. If you have trouble with your joints or balance, get a stationary bike or rower or do exercises sitting or lying down. If possible, find a group exercise program in your area, like Rock Steady Boxing. With your doctor’s approval get off the couch and push yourself!

2.    Protein is necessary for optimum health, but many of us must be careful when we eat it versus when we take our carbidopa/levodopa (for many, the first medication prescribed). Apparently, protein and carbidopa/levodopa compete for absorption when they get to the colon. It can be very challenging but try to wait about an hour after taking your meds before eating protein and wait about two hours after eating protein before taking your meds.

3.    If possible, choose your doctor carefully.  Not all neurologists are created equal. Try to get hooked into someone who is a movement specialist. The neurologist that first prescribed medication for my Parkinson’s never mentioned exercise nor the challenge of protein. When I quizzed him about these two important activities, he said, “You can do that if you want to”. I didn’t go back to him. Change doctors if possible if you aren’t comfortable.

4.    I hesitated to write this one because it might sound overwhelming but think it’s good to know what to watch for – you probably will only experience some of what follows as Parkinson’s affects everyone differently. The four main symptoms of Parkinson’s are tremors, slow movements, stiffness, and balance problems. Unfortunately, there are several other potential symptoms: freezing (times when you can’t move), constipation, sleep difficulties, nightmares, brain fog, muscle cramping, unintended movements, anxiety, drooling, weight loss, swallowing problems, facial tension, loss of voice, fatigue, loss of hand dexterity, restless legs or arms, excessive sweating, and skin problems. Sometimes it’s difficult to sort out the impact of Parkinson’s versus just getting older!

5.    Keep track of your own symptoms. Write them down and update the list once a month or so or after you change medications or dosages. It helps you to keep track of how your medication is working and makes for more effective doctor visits.

6.    Don’t give up. There’s a whole lot of ongoing research to find the causes of Parkinson’s, to find more effective medications, and to alleviate the symptoms of the disease. A cure? Maybe not in our lifetime, but in the meantime, don’t give up the fight to slow it down!