5 Things I learned that make a difference in the care of Parkinson’s disease

One of the most insightful exercises we can perform is to ask experts to teach us about the 5 things they have learned about Parkinson’s disease. We had the pleasure of sitting down with Dr. Bledsoe to listen to his wisdom.

Who is Ian Bledsoe?

Ian Bledsoe, MD MS is an Assistant Professor of Neurology and the Associate Medical Director of the Movement Disorder and Neuromodulation Center within the Weill Institute for Neurosciences at University of California, San Francisco.  His research interests include improving clinical classification of different forms of parkinsonism in addition to neuroimaging of Parkinson’s disease cognitive impairment and dystonia. He is involved in several clinical trials investigating new interventions for Parkinson’s disease, including novel medications and deep brain stimulation techniques.  

Bledsoe received his medical degree from the University of Pittsburgh School of Medicine. He then completed a residency in neurology as well as a fellowship in clinical neurophysiology and electromyography at Stanford Health Care. At Rush University Medical Center in Chicago, he also completed a fellowship in movement disorders and a master's degree in clinical research.

Bledsoe is a member of the American Academy of Neurology, the International Parkinson and Movement Disorder Society, and Performing Arts Medicine Association. Before attending medical school, Bledsoe earned a bachelor's degree in violin performance at Northwestern University. He continues to play and perform in his free time.

1. More is not always better!

The best treatment for Parkinson’s disease is like a balancing act between the good benefit of medications and the potential side effects. Well titrated medications can have a profound benefit on symptoms and quality of life. However, it’s important to keep in mind that the solution to a problem is not always to increase a medication. In fact, in many cases someone might actually feel and function better overall on reduced medication. There are certainly times to add medication or increase a dose, but this shouldn’t be the only tool in our box.

2.  Dizzy can mean different things

People can mean different things by the word “dizzy,” but clarifying what you are experiencing might lead to very different treatment strategies. Here are different types of dizziness and what they might be related to:

a. Light-headedness – this is the term often applied to the unusual sensation we all have experienced from time to time when we stand up very quickly and feel a “head rush.” It can be difficult to describe the sensation perfectly in words, but at its extremes people can feel as if they are about to faint. Light-headedness is most frequently caused by low blood pressure. Blood will start to pool in the feet when someone stands up and gravity is working against the pumping of the blood up to the brain. Usually, the brain will sense this drop in blood pressure and communicate to the blood vessels in the legs to squeeze harder in order to increase the blood pressure and to improve the blood flow to the brain. Sometimes this response does not work as well in people with Parkinson’s disease, and blood pressure remains too low when they stand up. The best thing to do if you experience this, is to sit down or lie down immediately so the blood flow doesn’t have to work so hard against gravity.

Some medications used in the treatment of Parkinson’s disease might make blood pressure even lower, including Sinemet (carbidopa/levodopa) and dopamine agonists like pramipexole, ropinirole, or rotigotine. It’s not uncommon for people who are on medications to control elevated blood pressure (hypertension) to find that the doses of these blood pressure medications need to be reduced after they start medications for Parkinson’s disease, since the additive effect may make the blood pressure too low. Make sure you keep an accurate and up-to-date list of all your medications, and know if you are on medications that are prescribed for elevated blood pressure. Make sure your neurologist knows about all these medications, especially if you are experiencing light headedness.

b. Imbalance – this is a more precise term to describe feeling off balance. There is no associated abnormal sensation (like light headedness or spinning), just a sense that balance is off. Especially if someone with Parkinson’s disease is experiencing falls, the treating neurologist might consider increasing medications like carbidopa/levodopa. However, if there is severe light headedness with very low blood pressure, the neurologist might reduce those same medications. This is why clarifying the nature and cause of dizziness is so important, as the treatment response may be exactly opposite in different situations.  

c. Vertigo – this is a term used to describe a sense that the world or ground is spinning, rocking, or moving when it actually isn’t. It is most commonly (though not always) associated with inner ear issues. 

3. Patterns, patterns, patterns…

One of the biggest challenges in treating Parkinson’s disease can be the variability of symptoms. If tremor is a symptom you experience, you may notice that sometimes the tremor seems very minimal, and other times quite marked, and the same can apply to many other symptoms. There is not always a perfect rhyme or reason to the variability of symptoms, but in many cases there may be pretty reliable patterns. For example, you may notice that 30 minutes before your mid-afternoon dose of medication is due, tremor and other Parkinson’s symptoms reliably become much more severe. Even if this isn’t the case every day of the week, if it’s true many days it might suggest that there needs to be some type of adjustment around that time. Being able to identify and point out these broader patterns can be very helpful to your treating neurologist in working together with you to optimize your medication plan.

4.  Stretch it out!

It is not uncommon for people with Parkinson’s disease to notice shoulder, knee, and hand joints becoming stiffer and less flexible over time. Joints and tendons tend to get tighter if they are not moved into their full range regularly. With the extra muscle rigidity that accompanies Parkinson’s disease, people may not be moving their shoulders and fingers as much as the joints and tendons are used to. Unfortunately, this can be a vicious cycle where less use leads to stiffer joints and tendons which makes it even harder to move the shoulders and hands. Daily stretching may help reduce this tendency. You don’t want to stretch to the point you are causing pain, but you should make sure you are regularly stretching out your shoulders, hands, and knees to protect range of motion. A physical therapist can be particularly helpful in designing a regular stretching regimen.

5. Stay engaged

My experience is that people with Parkinson’s disease do the best when they stay as active as possible in three ways: physically, intellectually, and socially. There are, of course, challenges to remaining active in these domains (particularly with all the limitations we have recently faced with the Covid19 pandemic). However, I encourage people with Parkinson’s disease to try to stay as engaged in these three areas as they can. There may sometimes be a tendency to want to pull back and isolate because of the new challenges that Parkinson’s disease presents. However, there are so many benefits of exercise (very well documented!), maintaining an active support and social network, and using intellectual skills, that I encourage thinking about ways to stay active in all these ways. 

To read more books and articles by Michael S. Okun MD check on Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonsFromTheBedside

He also serves as the Medical Advisor for the Parkinson’s Foundation.

To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.