The Parkinson’s Disease Foundation ( www.pdf.org ) recently hosted an online seminar about fatigue, and sleep disorders in PwP (People with Parkinson’s Disease). Dr. Joseph H. Friedman, Director of the Movement Disorders Program of Butler Hospital in Providence, Rhode Island was the featured speaker at the web-conference. While I was unable to attend the live conference, PDF has made the conference available on their website at Fatigue, Sleep Disorders and Parkinson’s Disease . If you click on the link and fill out the registration, you may listen and watch the presentation that they recorded. It only takes about an hour to hear this vital information presented by Dr. Friedman, and there is a Q&A afterward that is very helpful.
Since my regular readers KNOW I suffer from sleep problems, I found this seminar to be quite helpful. While Parkinson’s Disease is defined by the motor symptoms, PwP know that the non-motor symptoms can be devilish too. The insomnia, early morning awakening, inability to stay asleep, sleep apnea, restless legs, sleep talking and vivid dreams are not uncommon in those who have PD. In fact Dr. Friedman mentions that 90% of PwP have indicated that they have some type of sleep disorder. That is a large number of us who do not get the rest our bodies and brains need in order to function daily.
The topic of fatigue was especially enlightening in this seminar. Dr. Friedman states that studies show that fatigue does NOT correlate with the severity of Parkinson’s Disease. So, those who are in the early stages of the disease, or have a mild case of PD may have extreme fatigue and yet may not realize that they have PD. Fatigue is not sleepiness. It is a subjective experience that can be defined as being overtired, lacking in energy, or just being weary. While the fatigue may be physical it can also be mental, emotional or cognitive. These facts were interesting to me because those near me will hear me say, “I am weary”. In attempting to explain that – I may not be physically weary, but my mind is saturated and I just cannot formulate sentences that make sense! (Nope, I’m not exaggerating!!).
The most impressive statement made by Dr. Friedman in this seminar was the statement he made about exercise. He said, “The drugs we give you may help you now, but exercise is an investment in your future.” I was stunned that he described exercise as an “investment” in our future and he further spoke of exercise as a crucial element to helping PwP in the long run. We ALL know that when we move we work our frozen muscles and allow the connective tissues to receive better circulation. When we exercise we are not like people who do not have PD. They are usually fatigued AFTER they exercise. PwP disease are fatigued BEFORE they exercise and then have increased flexibility and stamina AFTER we exercise. I appreciated Dr. Friedman’s encouragement to exercise in order to help me fight the fatigue I face at the end of each day.
Click on the link above and find out more about the research he and his colleagues are conducting. I am grateful to PDF for sponsoring these valuable seminars.