Stunned and bewildered you probably don’t remember much else the doctor said. The Parkinson’s disease diagnosis comes like a blow to the solar plexus. But after a while, after the news starts to sink in, it’s natural to ask, “why me?” Is there any rhyme or reason, was I exposed to some toxic pesticide or could I have inherited it? Or were the stars in the wrong alignment and it was just my bad luck? It’s like the world has come apart; what certainty is there in life? The certainty of change. Spring is followed by summer followed by fall. And the seasons change because of something else we can be certain of, the earth’s orbit around the sun. The stars and the planets, after all, have been established in their courses for some time. This leads me to an astrological analogy I find useful, the “Saturn Return”. This refers to when, in its nearly 30-year solar orbit, Saturn returns to the same point it occupied when a person was born, connoting the crossing of a major threshold into a new life stage. The astrological explanation for a midlife crisis, as it were. A diagnosis of Young Onset Parkinson’s disease is just such a crisis forecasting what seems like a future that is at best disappointing or at worse of decrepitude and misery.
But let’s not get carried away, to paraphrase Shakespeare, “the fault is not in the stars, dear Brutus, but in our brains.” In reality, as devastating as the news of your diagnosis is, the process of working through the crisis can have positive results. Paradoxically, the diagnosis can force us to do some badly needed self-reflection – reexamining the expectations we have for our careers and reconsidering important relationships we may be taking for granted. If you navigate this storm wisely you can come through it happier, stronger, braver, more grateful for what you have and even optimistic about the future. Coming to terms with a diagnosis of Young Onset Parkinson’s disease means coming to understand that life with this chronic disease is manageable and that you can look forward to many long and good years. I know this because I’ve worked through it. I was diagnosed 10 years ago when I was 50 and working full-time, had a 10-year-old child and a wife who also worked full-time. My maternal grandmother had Parkinson’s disease and my father died with it. I was well acquainted with the symptoms and even if I can’t say I was entirely surprised when a neurologist told me I had it, it didn’t make it any easier.
What is Early Onset Parkinson’s disease?
Anyone diagnosed with Parkinson’s disease (PD) at age 50 or younger is generally described as having Young Onset Parkinson’s disease (YOPD). At present there is no cure for PD. Ninety percent of all people diagnosed with PD are older than 50 with the incidence increasing as people get older. The implication is that most people are diagnosed at a time of their lives when they are already retired or toward the ends of their careers, their family lives are more or less settled and they have peers with their own health issues. Whereas someone with YOPD is not only faced with how to manage the disease but also the implications it has for their careers and younger families. This essentially is the difference between those diagnosed with YOPD and the older population with PD. The particular set of symptoms, how the disease affects an individual, what doctors call its presentation, is different for everyone, young or old so it is difficult to make generalizations about how the disease affects ether group as a whole. Except the YOPD population tends to have more cases of PD attributed to genetics and toxins as opposed to idiopathic (of unknown cause) diagnoses and they have fewer other health issues than older patients. Otherwise treatment protocols are the same.
With that in mind, let’s briefly consider several issues:
Family Life – How will it affect my family? Everyone’s experience with PD is different; from the start there is no way you can know how it is going to play out. But, make no mistake, PD is a progressive and insidious disease that will sooner or later alter the relationships you have with your family — for example, restricting the types of physical activities one can participate in with them. Loss of facial affect has implications for relationships as well as the gradual softening of one’s voice. Non-movement related symptoms such as depression and anxiety also adversely affect relationships. These sorts of issues need to be dealt with proactively – over time and with patience. Dealing with these issues directly, problem solving and developing alternative plans as a family can bring your family together and strengthen relationships.
Career – How will PD affect my career? This, of course, depends on a combination of your particular set of symptoms and your particular kind of job. Many people with YOPD keep their careers going for a surprisingly long time although a blue-collar career that involves a lot of physical activity or a highly stressful job is generally not conducive for someone dealing with PD.
A recent New York Times article, Too Old for Hard Labor, but Still on the Job, offers some insight on this issue, pointing out that switching jobs that are less stressful and less physically demanding may not be easy and often pays less but enables you to continue working. While, again, the new career could pay less, it may offer other satisfactions that take advantage of your accumulated years of experience and expertise. This may be teaching, consulting, estimating or contract administration to name a few. Owning your own businesses or self-employment has the advantage of badly needed flexibility and the possibility of delegating tasks. A whole infrastructure exists on the federal, state and local levels to educate, develop and retrain skilled labor. Think community and technical colleges.
In the corporate environment a more immediate consideration is how and when to tell your employer and coworkers. Most of the time employers and coworkers will be considerate but discrimination is possible and a consideration. Be aware of your rights; the American’s with Disabilities Act exists to protect you and requires that your employer make a reasonable effort to accommodate you. An Occupational Therapist may be helpful in developing skills and strategies in dealing with day-to-day issues related to your situation.
Financial Planning – Related to your career issues is financial planning. Looking forward to the day when it becomes clear that you need to retire from your job it pays to have maximized your available retirement options such as 401k and college savings plans for any children etc. The minimum age to qualify for social security is 62 if you are younger than this you may qualify for disability compensation. Keep in mind that your minor children may also qualify for compensation. Likewise, the minimum age for Medicare is 65 if you are younger than this and cannot afford health insurance you may qualify for Medicaid. In California the program is called the California Medical Assistance Program or Medi-Cal.
- Develop a strong support team with diverse players:
- Your neurologist – you need to be comfortable discussing difficult symptoms like depression or compulsion issues. Your time with your neurologist is necessarily limited so come to your appointments prepared. He or she can refer you to professionals with the expertise to help you with specific issues.
- Physical therapist – Balance, gait and coordination issues are the hallmark of PD. Physical therapist can help you compensate and improve on these problems. After evaluating you the physical therapist can set you up with an appropriate exercise regime that will keep you healthy and hopefully prevent falls.
- Occupational therapist – After assessing your needs, an OT can assist you with home and workplace modifications and adaptations, handwriting aids, dressing and grooming aids among other things.
- Speech therapist – Most people with PD experience speech issues with the gradual softening of the voice being the most common. Some patients will also develop swallowing problems in the later stages of the disease. Voice problems, like many PD symptoms, may evolve so slowly that the patient is unaware of it. Many experts recommend working with a speech therapist early in the diseases to head off these issues.
- Exercise trainer – working with a certified personal trainer with experience working with people with PD is a great way to continue your exercise routine.
- Neuro Psychologist and Psychotherapist – You’re not the first person with PD who feels depressed or has problems with interpersonal relationships, finding a therapist with experience in this area can be very worthwhile.
- Family and friends – PD can be isolating, the symptoms make communication and travel difficult. Cultivating the important relationships in your life goes a long way in maintaining good quality of life.
- Exercise – this is arguable the most important thing you can do for yourself and one that you have the most control over. The benefits are many:
- A stress reducer,
- Forestalls other issue issues helping prevent cardiovascular diseases and diabetes among other things. Believe me, you’ve got enough problems.
- You will feel better – physically and emotionally.
- Symptom relief –helps with stiffness and sleep issues.
- Get involved – Helping others with PD is a great way to find a sense of meaning and satisfaction from your experience. Join us at PCLA; join or run a support group. We have volunteer opportunities at our various events and educational seminars.
- Raise money for a cure – Join Team Fox or Team Parkinson
- Join a PD trial or study – Southern California, with its many major medical and research centers, always has a number of these opportunities. Scientists are making rapid progress in understanding the pathology of PD and are pursuing several promising avenues towards finding a cure. Much of that research is happening right here in California. Be a part of it.
- Lobby Congress – Join PAN (Parkinson’s Action Network). PD and other neuro degenerative diseases like Alzheimer’s are a national health emergency. The costs of these diseases to the national economy, not to mention amount of human suffering, can’t be over stated. The cost of research and related trials are enormous. Only the federal government has the moon shot kind of resources it takes to find the cure.
Although it may have felt like it, the earth didn’t stop spinning and the planets didn’t stop in their orbits when you got the news of your PD diagnosis. Sooner or later life throws everyone a curveball, learning to deal with it with courage, grace, humility and humor goes a long way in coming to terms with a diagnosis of PD, not just in our own sense of wellbeing, but in the quality of our relationships. Have patience with yourself. PD doesn’t define us, but it is part of who we are; it isn’t a destination, it’s our journey.