Beginning Your PD Journey
A social worker who deals with Parkinson’s patients at a renowned movement disorder clinic recently noted that many newly-diagnosed PD patients come out of the doctor’s office feeling like they’ve been handed a “death sentence.” But while PD is an incurable, progressive neurological disease, people with Parkinson’s can live a quality life for many years by strengthening their bodies and minds for the coming battle. So adopt the mentality of a PD Gladiator and jump right in with these strategies for living well with Parkinson’s disease!
Adopt a team approach–and be an active player
Your neurologist or a movement disorder specialist (MDS) is the quarterback of your care management “team,” but other health professionals such as speech, physical and occupational therapists, sleep disorder specialists and psychiatrists–as well as your family and friends–can help you live better with PD. Many neurologists wait for impairments to appear before referring patients to a specialist, but consider assembling a team early on and requesting baseline evaluations from key players. Some anti-Parkinson’s drugs have psychological side effects, such as impulse control disorders, and a psychiatrist can better evaluate any changes if you’ve had a few sessions before starting treatment. A physical therapist can similarly establish a baseline for observation and help you design an exercise program to ward off impairments before they appear, including community-based programs if available in your area. Your neurologist should be able to provide recommendations for therapy and, if needed, a referral.
Your neurologist or MDS will probably prescribe one or more medicines to treat your symptoms. Follow your doctor’s instructions carefully, but do your own research on the classes of drugs available and be prepared to discuss your options. For some people, the risks of potential side effects outweigh the benefits of certain anti-Parkinson’s drugs. Your doctor needs your input to find the right combination of medicines for you.
Recommended Reading: The New Parkinson’s Disease Treatment Book: Partnering with Your Doctor To Get the Most from Your Medications, By J. Eric Ahlskog PhD MD
Studies consistently report that people with PD who regularly engage in vigorous exercise tend to do better than those who are sedentary, although the precise role exercise plays in delaying the progression of the disease is still being researched. Click here for more information about the latest research on Parkinson’s disease and exercise. Some studies suggest that forced exercise–intense activity outside of your normal comfort zone–provides the optimal benefit, but studies also show benefits from other activities like walking, tango dancing and tai chi. For those who can afford to join a private gym, consider spending a little extra money on a personal trainer, at least to get started on an exercise regimen. As always, consult your doctor before beginning any exercise program.
Check out our “Crafting Your Personal Exercise Routine” page for exercise recommendations to improve overall health and fitness and for guidelines to help gauge the intensity level of your favorite activities. The American College of Sports Medicine (ACSM) recently released basic recommendations on the quantity and quality of exercise for adults, categorized by cardiorespiratory exercise, resistance exercise, flexibility exercise and neuromotor exercise, which may help guide you in developing a complete exercise program. Consider working with a physical therapist with a neurological specialization to add elements to your routine that combat impairments particular to Parkinson’s disease.
Many Parkinson’s organizations sponsor free or low cost community exercise classes. In Atlanta, we have about 40 weekly classes adapted for people with Parkinson’s included in the PD Gladiators Metro Atlanta Fitness Network. We believe classes focusing on people with Parkinson’s and their care partners offer the additional benefits of working on PD-specific impairments and acting as a natural support group, but many senior centers also offer exercise programs specifically geared toward older individuals. Get your exercise where you can!
Newly-diagnosed PD patients often tend to enter a period of denial and/or apathy while they are still relatively unimpaired, whether with or without the assistance of anti-Parkinson’s medications. But, as noted in this blog post, there is a very real cost to denial and apathy–dopamine-producing neurons don’t stop dying while you delay starting that exercise program!
INSTANT SURVEY: CLICK HERE to take the survey–Research suggests that exercising at an intensity outside of your comfort zone is most likely to slow the progression of Parkinson’s disease. What’s your most intense regular workout? See the results so far instantly.
Give a support group a try
Support groups sponsored by local or national PD organizations help families with routine issues, provide a safe place for learning about PD from others who’ve lived with the disease for many years, and serve as a meeting ground to make new friends who share similar experiences. For many people with PD, their support group is their first contact with the PD community, a robust corps of activists who advocate, educate, and provide valuable services to Parkinson’s sufferers and their families.
To find a support group in your area, check out the websites for your local American Parkinson’s Disease Association and National Parkinson Foundation chapters. If you are in an area that does not have a support group, contact the APDA or NPF and they will try to help you get the support you need.
Facebook also has many groups devoted to Parkinson’s support, most of which are private and some of which are available by invitation only. These provide excellent opportunities to seek advice and support from your peers, especially in some private groups with hundreds of participants. PD manifests with different symptoms for everybody, and you are more likely to find someone who’s dealt with your issue in a group of 300 on Facebook than in a much smaller sample in your local support group. Of course, double-check any advice you receive online with your neurologist! Contact us if you can’t find a group that meets your needs, and we will try to find one for you.
Educate yourself about clinical trials
There are an estimated one million people with PD in the United States, but only about 3-4% of them have signed up for FoxTrialFinder, a free service provided by the Michael J Fox Foundation to help connect Parkinson’s patients with clinical trials. Many expensive clinical trials for new treatments and therapies are started–sometimes making it through Stage 1 or Stage 2–but are never finished because willing participants cannot be found. Scientific research is necessary to develop better treatments and ultimately find a cure, but many practicing neurologists who are not involved in research never raise the topic with their patients. By participating in clinical trials, you play a more active role in your own healthcare and can gain access to new PD treatments before they become widely available. Consider asking your neurologist or MDS to help you make an informed decision about participating in clinical trials.
To learn more about clinical trials, check out Dr. Soania Mathur’s article, “Everything You Need To Know About Parkinson’s Clinical Trials: A complete guide…” For information about clinical trials recruiting subjects visit: http://www.pdpipeline.org http://www.clinicaltrials.gov http://www.centerwatch.com or www.foxtrialfinder.org.
Click HERE for clinical trials actively recruiting participants in the Atlanta area.
Pay attention to your diet
Researchers have not been successful in demonstrating a neuroprotective effect for any special diet or supplements for PD, although the paleo diet used by Dr. Terry Wahls to combat MS and the low-carb, high-fat diet advocated by Dr. David Perlmutter have drawn much interest. Nutritionists agree that healthy eating can help keep your bones strong, decreasing the likelihood of a fracture if you fall. Staying well-hydrated and eating your veggies also helps you fight constipation, a common complaint from those with PD. Because of links found between pesticides and PD, organic meat, fruits and vegetables are often recommended if you can afford them and have access.
Check out this blog post for a discussion of an intriguing study by one of the few nutritionists specializing in Parkinson’s disease: News From the Front: Key Takeaways from the World Parkinson’s Congress, Part I (Diet, Exercise & Supplements)
Snooze or lose
A good night’s sleep is important for everyone’s health, but regular sleep is critical for those with PD and often hard to come by. Sleep disorders are common for people with PD, but get your rest when you can!
A common sleep problem experienced by people with Parkinson’s is REM sleep behavior disorder, or acting out dreams while asleep. If your spouse is waking up with unexplained bruises, tell your neurologist! Recent studies have also found that REM sleep behavior disorder is a strong predictor of the development of Parkinson’s disease.
Meditate while you shake
Many people with PD ease their symptoms with alternative and complementary approaches like yoga, tai chi, meditation, Reiki or massage. Consult with your neurologist or MDS before beginning any course of therapy. Avoid self-proclaimed experts who claim to “cure” PD and any who advise adjusting prescription medications without speaking with your neurologist or MDS.
One way to gain back some control over your condition is to advocate for changes that will improve the lives of people living with PD. Raising community awareness. Fundraising to find a cure. Donating to a cause (like PD Gladiators!). Volunteering to run a support group. Joining the Parkinson’s Action Network as an e-advocate. These are all tried and true ways to strengthen the collective voice of the PD community and improve our future, but not the only ways. In searching for your unique voice, consider passing along the information on this site to other people with Parkinson’s disease who might benefit, and help your neurologist keep up with the latest advances in research on exercise and PD by bringing copies of the latest studies to your next visit.
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