Learning About Parkinson’s Disease from Michael J. Fox
The month of April plays host to Parkinson’s Awareness Month. According to the National Institutes of Health, as many as 1 million Americans have Parkinson’s Disease (PD), most of which are diagnosed after the age of 60. However, a diagnosis later in life isn’t always the case. About 5%-10% of people are diagnosed before the age of 50. This is exactly the case of famous PD activist Michael J. Fox who was diagnosed at the early age of 29.
For 32 years Michael has lived with PD, creating a successful research foundation, continuing his acting profession, and learning to navigate life with the disease. Along the way, Michael has gained some valuable nuggets of knowledge on dealing with PD such as, building an effective Care Team, maintaining a career, prioritizing your mental and physical health, and cultivating healthy relationships with those around you.
Your Care Team
When diagnosed with PD, the team of medical professionals, your care partner, and even yourself make up your Care Team. Choosing the best physicians, neurologists, and specialists who proactively work with you is essential to getting the individualized treatment you need. Choosing the best-allied professionals such as physical therapists, occupational therapists, and speech therapists is also imperative to maintaining your health. Whether traveling to a number of outpatient facilities or utilizing a home health team to come directly to you, your allied care team is essential in helping to deal with the day-to-day needs PD can demand of you. The next vital member of your care team is your Care Partner. The Michael J. Fox Foundation defines this person as the individual – spouse, child, friend, or parent – who takes on many responsibilities from accompanying you to doctor’s appointments, to managing more household responsibilities. Your Care Partner is your advocate and main representative. Ensuring their health, understanding what your healthcare needs are, and managing daily needs is so important when dealing with PD. Lastly, you are the last, and most important cog in the wheel of your Care Team. It is important to educate yourself on PD and know what you want for your treatment. You can choose your treatments, and even the medical professionals you feel can listen and work with you best. You are in the driver’s seat of your treatment and the biggest advocate for your rights.
Maintaining Your Work and Benefits
Start familiarizing yourself with your employer’s medical policies and/or accommodations. Although being diagnosed with PD doesn’t necessarily mean you have to quit your job right away, you should take the time to plan for this inevitable outcome. Speaking with your employer, or to your direct leadership about your diagnosis is also an option to consider. If you suspect your employer may not treat you fairly upon disclosing your condition, it may be advisable to seek out legal counsel.
In that you may not be able to continue working, it is important to review your financial and insurance options. Whether that be looking into a pension plan, early retirement, 401K or another financial plan you must figure out your next steps for action. Don’t forget to also review your rights and benefits that you may be privy to with the Americans with Disabilities Act.
Prioritizing Your Mental & Physical Health
According to the Michael J. Fox Research Foundation, one of the most important unmet needs of Parkinson’s Disease is an effective treatment for side effects such as depression and anxiety. Depression and anxiety are some of the symptoms of PD. Recognizing your mood changes and being proactive with your doctor, Care Partner, and implementing therapy or counseling can keep you on track for healthier PD management.
Incorporating a healthy exercise, diet, and sleeping regimen is an integral part of your daily PD maintenance.
The power of exercise is incomparable. Despite the diagnosis, your ailment, or setback you may have heard that exercise is always on the list of positive treatments. This is also the case with PD. Find what exercise is the most fun for you and consult with your care team to stay active and strong. Work with your physician and physical therapist to create a workout routine that is safe and effective for you!
Eating healthy with PD goes beyond getting the best nutritional intake. Although ensuring you get the proper nutrients is vital to your health, other symptoms such as constipation, low blood pressure, muscle cramping, and/or swallowing problems may affect you too. Be sure to work with your care team to make changes in your diet to accommodate your symptoms. For example, working with a speech therapist can assist you with swallowing difficulties.
Create a healthy sleep regimen. With PD, so many individuals face sleep challenges and an overall feeling of fatigue. Make healthy habits and routines to keep you on track! Limit naps, create a regular nighttime routine, and avoid caffeine, alcohol, and exercise later in the day to get optimal rest.
Relationships
When you or your loved one is diagnosed with PD, the news can have a ripple effect on everyone in your life. From spouse to family, friends to co-workers many individuals will be impacted by the news and subsequent changes. Understanding the best way to tell your loved ones is vital to communication about your diagnosis. Be prepared to answer questions and ease reactions. Finally, it is important to recognize your own fears, questions, and challenges. You may feel more validated talking to someone going through the same trials as you. Consider joining a support group to express yourself and even glean some knowledge from other individuals living with PD.
Remember, having PD is a long-term battle, but it is a battle worth fighting. In the words of Michael J. Fox, “Parkinson’s sucks, but it’s a great life…” If you would like to learn more about PD check out our blog here https://bit.ly/PRKNAwareness and for more information about the Michael J. Fox Foundation visit https://www.michaeljfox.org/.
Home Health Professionals is always here to give you helpful information, top-notch treatment, and treatment from allied professionals who not only strive for the best quality care but also listen to your concerns and wishes as well.
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