Webinar Recap:
Men and Parkinson’s Disease

Webinar Q&A

What did you know about Parkinson’s Disease before your diagnosis?

Seems that most folks don’t know much about PD unless they’re personally touched by it in some way, such as having a relative who has been diagnosed with the condition, or knowing of a famous person with the diagnosis, such as Muhammad Ali or Michael J. Fox.

What were some of your body’s early signs and symptoms before you were diagnosed?

The onset of PD often occurs silently and can happen years before the actual diagnoses.  As many with PD reflect back in time prior to their diagnosis, certain symptoms were present for years prior to the diagnosis but not recognized as part of the disease process.  Some of the most common “prodromal” symptoms include constipation, the loss of sense of smell, depression, sleep disturbances, changes in handwriting, and loss of muscular coordination.

How does having PD affect the relationship with your significant other? What is the incidence of Erectile Dysfunction (ED) in men with PD?

PD can lead to changes in relationships with your spouse, with other family members, with co-workers and others in your life.  Changes in mood and self-image, alterations in communication, as well as other aspects of PD, can lead to changes in roles within any relationship.  Staying active, involved, and openly communicating seems to foster a greater sense of well-being and quality of life.  There have been several studies that show that the incidence of ED is around 60% of men with PD but there is another study that shows that in married men with PD, the incidence of ED is no greater than people who do not have Parkinson’s.  Failure to ejaculate or failure to have an orgasm sometimes occurs in men with PD also.  The good news is that ED and other sexual problems in men with PD usually respond very well to treatment.  It may be helpful to know that are some common Parkinson’s drugs, such as levodopa, that can actually increase libido in men.  Please check with your physician.

How does PD affect your children?

Children will no doubt have questions about PD.  As with most of us, they tend to worry more about what they don’t know than what they do know, so it’s advisable to answer their questions openly and honestly.  Explain PD in simple terms, and encourage them to ask questions and talk about the situation.  One of our panelists stated that his children are learning how to deal with adversity, as they watch their father manage PD in his life.

As a man living with PD, do you question the physical and mental impacts on your health and whether you will be well enough to continue working?

Remaining at work while living with PD can definitely be a challenge.  Diminished executive functioning skills (things like planning, problem solving, memory) can lead to anxiety and apathy.   Both motor and the nonmotor symptoms may influence your performance at work.  For example, handwriting may be affected to the point where you cannot recognize your own handwriting, and some days, writing at all might be challenging due to tremors.  Memory loss may be evident as you try to remember someone’s name or make a point in a conversation.

Does PD affect your vision?

PD can certainly cause vision disturbances such as double vision, blurred vision, and changes in color perception, among others. Symptoms may also include either reduced frequency of blinking (leading to dry, irritated eyes) or excess blinking (leading to involuntary closure of the eye).   This list does not include all possibilities of vision disturbances, so it’s very important to check with your doctor to rule out other causes of changes in vision, and to remember that many medications can affect the eyes.

What helps with morning stiffness?

Exercise, with effective stretching, can help morning stiffness.  Also, weight lifting and yoga may ease some of the stiffness.  Some folks have found that getting up and getting moving as soon as possible helps to relieve stiffness.

What diet is best for PD?

While there is no diet specific to Parkinson’s Disease, a healthy diet rich in whole grains, vegetables, fruits, and fiber is always a good option. Other guidelines may include keeping it low in fat, sodium, and sugar, and high in antioxidants (for brain health). It’s important to remember that protein-rich meals may interfere with the absorption of some medications, and that others work best on an empty stomach.  Check with your prescriber or your pharmacist for specific guidance.  In addition, be aware of specific symptoms such as difficulty swallowing, tremor, stiffness that may make eating certain foods difficult.  As always, adequate hydration is key.  Specific diets that may offer some structure include the Mediterranean diet and the MIND diet.

Fatigue is a major problem. Any suggestions?

Fatigue is a very common symptom of Parkinson’s Disease and is often considered one of the most problematic as it negatively impacts quality of life.  It may be associated with other symptoms, such as depression, sleep disturbances and apathy.  Ironically, exercise is one of the most effective ways to combat fatigue.  Eating smaller, more frequent meals, taking a short nap (10-30 minutes), keeping a regular schedule, and reducing stress may be ways to help. Because fatigue may be caused by a number of other conditions, to include diabetes, thyroid disease, heart problems, it’s really important to discuss this with your provider.  It may be time to consider a change your medications, as well.

What do you recommend for muscle rigidity?

Full question:

A major symptom for me is muscle rigidity.  Has any research been conducted on any benefit derived from over-the-counter joint and muscle relief enhancers (e.g. Relief Factor) for PD patients?  If so, what were the results?  If not, is there any negative consequence known?

Over-the-counter medications are plentiful these days for a multitude of ailments.  However, it’s good to remember that anything we take, prescription or over-the-counter, can cause unintended side effects.  So it’s best to check with your provider before starting anything new.  Dr. Vaughn suggests that daily exercise helps him with muscle rigidity and muscle tension more than anything.  He also recommends having your Vitamin D level checked by your physician, as low Vitamin D seems to make muscle problems worse.

Are there any studies which examine the rate of progression or average duration (time period) in each of the four PD stages?

Every person with PD is different and therefore, the progression of their symptoms will be different.  While much research has been done, and numerous tools have been developed to be used in the clinical setting, it’s difficult to determine the rate of progression from one stage to the next. So many variables have to be considered, such as a person’s specific treatment, other conditions (diabetes, heart disease, etc.), motor and non-motor symptoms, and quality of life issues, just to name a few. It seems to be true with the evidence that we have so far, that a significant thing that helps with the progression of PD is vigorous exercise. Believe that or not, vigorous exercise helps the brain make new brain cells, which is incredibly important. There is new data out that is very encouraging.  And theoretically, this should help PD.

Are there any new vitamins or supplements that you would recommend to help boost the immune system?

Dr. Vaughn recommends focusing on reducing inflammation when considering what medications, vitamins and supplements to take.  Some of his specific recommendations are listed below:

  • If an individual with PD is being treated for high blood pressure, he should consider taking an ARB (Angiotensin II Receptor Blocker) for blood pressure management, as it seems to slow the progression of PD. “ARBs” end in “artan,” such as telmisartan.
  • If an individual with PD is being treated to lower cholesterol, he should consider a medication that crosses the blood-brain barrier, such as simvastatin and atorvastatin. They are anti-inflammatory and may have some effect on the brain cells that cause Parkinson’s Disease.
  • If an individual with PD is being treated for depression, he should consider nortriptyline rather than some of the more common medications, like Paxil and Prozac, as nortriptyline seems to have an anti-inflammatory effect.

Dr. Vaughn’s list of recommended vitamins and supplements is included for your consideration.  It is very important to speak with your physician before changing any medications or adding any vitamins, supplements or over-the-counter substances.

How important is exercise for a person with PD? How often should men exercise and what should my exercise program include?

Exercise is extremely important to those living with PD.  In fact, the Davis Phinney Foundation advocates that exercise improves the physical body, improves endurance, improves general well-being, AND delays or reduces problems of PD.  Studies have shown that the motor AND the nonmotor symptoms (like memory, thinking, fatigue) of PD are positively influenced by vigorous exercise. In fact, we often hear “exercise is just as important as medication,” but it’s not meant to replace medication. It’s very important to find an exercise that you enjoy, something that you’ll commit to. There are numerous possibilities, to include dance, boxing, running, biking, swimming, yoga, and tai chi. There are also plenty of exercises for those with limited capability, such as seated aerobics and seated yoga. It’s super important to stretch, to be mindful of injury prevention, and to be consistent. Experts say that we should all strive to exercise at least 150 minutes per week. Before you begin any exercise program, check with your physical therapist or provider.

How does high intensity exercise help people with PD?

High Intensity Interval Training (HIIT) is a method of exercising in which you run or walk (or whatever your chosen exercise is) for 30 to 60 seconds at the top of your physical limit.  This is followed by an easy recovery exercise for the same amount of time.  This pattern should be repeated for about 20 minutes, for optimal effect. One Polish study (cited by the Michael J. Fox Foundation) found that “HIIT could alleviate rigidity and excessive muscle tone that makes it difficult for a person with PD to move his arm and legs.”  HIIT has been shown to slow the progression of PD. It has no side effects, costs nothing, and makes you feel better! Dr. Vaughn recommends the following book on HIIT: Workout Prescription by Dr. Jordan Metzl.

What is the best form of in-home exercise when dependent on a walker?

There are lots of demonstrations for in-home exercise for those with limited mobility.  Your physical therapist would be a great place to start as a source of information and guidance.  YouTube is a useful source as well.  As always, check with your physician before starting a new exercise program, and always be mindful of safety and injury prevention.

What information do you have about DBS? What has been the experience of those having DBS surgery?

DBS, or Deep Brain Stimulation, is an intervention for PD that involves the surgical placement of a thin wire into a very specific part of the brain.  The DBS lead is connected to a device like a pacemaker that is implanted below the collarbone. The system can be turned on and off by the patient or by the clinician.  While many patients may be able to reduce their PD medication doses over time, most patients will not be able to stop taking PD medications completely. Valuable information about DBS can be obtained from the Parkinson’s Foundation, the American Parkinson’s Disease Association, and the Every Victory Counts book by the Davis Phinney Foundation. According to the Parkinson’s Foundation, most DBS patients report experiencing a “smoother response to medication, more “on” time, and improvements in dyskinesia, tremor and rigidity.” If you are considering DBS, you’ll need to consult with your neurologist and then a movement disorder specialist.

How do you stay positive and overcome anxiety and depression?

Numerous suggestions have been made to help someone living with PD overcome anxiety and depression.  Many rely on their faith as a source of strength and comfort. Consistent and vigorous exercise seems to help many with mood, a greater sense of well-being, and both physical and emotional strength.  Because PD can be very isolating, many people rely on their relationships with others, either on a personal level or through support groups. One of our panelists said that getting involved with a support group is the best decision he has made after his diagnosis.

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