So You Have Just Been Diagnosed with Parkinson’s ….. What Do You Do “First”?

So you have just been diagnosed with Parkinson’s disease (or any other chronic illness), a 15 year veteran of success with Parkinson’s, John Baumann, speaks out on what you should do “first.”

I was discussing with my sister’s husband a new presentation on what to do when diagnosed with a chronic illness. I was going to present this to People with Parkinson’s, like me, at a conference. His astute response was, “aren’t you too late for most of your audience members?” He followed up by saying, “how many of those in the audience were diagnosed that day.” “You’re an accomplished communicator who has lived with Parkinson’s disease every day for over 15 years. Who better to write and speak about lessons learned then you, but your target audience should be to prepare those who don’t have a chronic illness in the unfortunate event that they get one.” This information is essential, but it is much more timely before diagnosis and definitely timely immediately at the time of their diagnosis.

As Monty Python famously said, “No one expects the Spanish Inquisition.”  Likewise, nobody expects to get a Parkinson’s disease diagnosis, especially not at 41 years old.

If it happened to me, it can happen to you. The purpose of this Article is to prompt you to do things now and be prepared should you be diagnosed at a later date with a life-changing condition. Now, 15 years later, I have learned an enormous amount. Thus, the title, “If I knew then, what I know now …”

You are not superman. Nobody is. I used to think I was. An Ivy League education, a profession that required only the use of my brain, not my arms and legs. Why did I need long-term disability insurance? How could I get hurt? I was only 40 years old, in decent shape and going to be able to practice law forever. Even though long-term disability would have cost me just pennies, I could wait until I was 55 or 60. Boy, was I wrong on all counts.

I remember the fateful day like it was yesterday. I was blindly referred to a neurologist by a doctor specializing in internal medicine. I show up at my appointment on time and, since I was a new patient, filled out lots of paperwork. I was the last patient of the day and the receptionist had left. The doctor came into the waiting area and I handed her the paperwork. She could hardly read my handwriting, took one look at me and said those fateful four words that changed my life forever, “You have Parkinson’s disease.”

After she peeled me off the ceiling, I asked her if there were a confirmatory blood or urine test. She informed me that the only way to be sure was to perform an autopsy. I had enough of my wits left to decline the autopsy.

She went on to say that I had all the classic, what they call, motor symptoms or manifestations: my right hand was tremoring, my left arm did not swing when I walked, my face showed no expression (called facial masking), I did not blink, my handwriting was illegible, and my voice was no louder than a whisper.

Holy Schnikes (for those Tommy Boy fans out there), why had I not noticed these strange actions before. It then occurred to me that I was playing golf one day about a year before and could no longer putt straight (not that I was ever a great putter). I also had been noticing that I had lost power and accuracy throwing from shortstop to first base (now that was disheartening). In fact, at long work meetings, I actually resorted to sticking my thigh with a safety pin to stay awake (fatigue is my primary manifestation of PD). At least, it was no longer a mystery.

There are so many “first” things to do, it is mind boggling. These are so important to do immediately that I did not want to downgrade any to “second.”

First (part 1), you need to not look at this as a horrible death sentence. It is horrible, no doubt, but there is hope that a cure will be found and there are things that you can do to have a decent, if not amazing, quality life for many years, if not decades, with Parkinson’s. Take a breath. Shut down your feelings and emotions, there will be time for that later. Right now, you must go into warrior mode.

First (part 2), I recommend locating and researching the Parkinson’s support center in your area. For me, the Neuro Challenge Institute for Parkinson’s. They have a wealth of resources. Confirm for yourself the symptoms. You will learn that many People with Parkinson’s (PwP), as we like to call ourselves, symptoms have been apparent, yet undiagnosed, for years, if not decades: loss of sense of smell, sleep issues, vivid dreams, occasional slipping into a zone (a faraway look), unexplained balance issues, occasional tremors, etc.

First (part 3), you should ask the support center staff for the names of “Movement Disorder Specialists.” You should obtain and read the many brochures. You should discuss with them how to tell your family (one of the emotional heartbreaking things you will ever do). If you are still working, you should ask them if they have the names of employment lawyers that have experience with Parkinson’s. You should ask them if they have a list of benefits lawyers.

First (part 4), you should make an appointment with the Movement Disorder Specialist that you chose (after researching the list).

First (part 5), you should meet with an experienced employment law attorney to discuss what rights you now have and which ones you think you might have, but don’t. You should discuss if, when and how you will inform your employer.

For example, to take advantage of the Family Medical Leave Act (for both you and your care provider) in the United States, you would need to notify human resources by filling out their form. If you have been working there long enough and they have the requisite number of employees, you would be entitled to 12 weeks of leave (paid or unpaid depending upon your employer) per year. You do not have to take it all at once. You can take leave in smaller chunks, called “intermittent” leave.

Most of us with PD have fatigue and stress issues. Taking a day or half a day off to sleep-in or recharge your batteries may be just what you need. Although HR cannot disclose your “significant health condition,” they will have to coordinate your approved time off (without the possibility of discipline) with line management.

If you inform your employer that you have a disability, you are also entitled to protection under the American with Disabilities Act (ADA). Sounds great, but it does not provide the complete protections that the name implies.

One of the viable parts requires that the employer provide a “reasonable accommodation” which will allow you to do the “essential functions” of your job. You should get involved in his discussion even if you must force your way in. Your attorney may need to get involved at this point. There could be many accommodations that may not be acceptable to you. Better to provide your input and influence the decision on the front end than have to fight a decision that is already made after it is made.

I had one client who decided to inform his employer. He was in inventory. He could not drive a forklift any longer. He worked with 5 other people in inventory during his shift. Driving the forklift was only 5% of the job. Instead of realigning the jobs to have the other 5 workers use the forklift 6% of their job instead of 5%, the company demoted the PwP to an entry level job, working outside in the cold unloading trucks by hand. Had he been involved in the front end, he may have saved himself some heartache. The employer eventually did what I proposed.

Where the ADA falls short is in the application of the standards of proof.  It is supposed to protect individuals from disability discrimination.

As to applicants for a job, how could you ever prove that you were NOT hired due to your disability. Imagine the investigation needed on applicants. You could go to the EEOC and file a complaint against every employer that turned you down for a job. The EEOC is not going to put in the time and effort necessary without any proof. So, you need proof to get the EEOC to take the case, but you need the documents to find the proof. You may need the EEOC’s help to get the relevant documents. An unending circle.

As to employees who are fired, demoted, etc., the analyses, favors the employer. The employer is required to just “articulate” a non-discriminatory reason (usually something subjective like deteriorating attitude). The employee then has the burden of proving that the reason given was a “pretext,” and the real reason is the disability. There are two ways to prove pretext: (1) a smoking gun (for example, an email saying that the company should fire this guy because he is disabled), not likely to happen, or (2) a pattern. To demonstrate a pattern, the documents that will need to be reviewed is quite daunting.

So, the lesson learned is to not give your employer any excuse to let you go. Stay as far away from the line as possible. If you do get fired, don’t fool yourself into believing that you can just find another job, especially a high paying one. As discussed above, given that the last few candidates for a position who have similar qualifications and one happens to have obvious signs of PD, just ask yourself who you would hire.

It is never too early to research and choose a disability attorney, at the very least to know how the process works. There are waiting periods for social security disability and Medicare. In the event that you can no longer do, or are fired from, your previous job, it may not be in your best interest to take a much lower paying job. Be sure and consult with the disability and employment attorneys that you have identified.

First (part 6), realize that you are experiencing a “shock” to your system, I liken it to PTSD, and you may not be able to make decisions as well as you did before. This is a hard one to accept. You may need to run your decisions by someone you trust before taking action. Priding myself on my pride, I fell down in this area. Swallow your pride and get the help you need making major decisions and take their advise.

Don’t build a 4,000 square foot house and take out a $400,000 mortgage. In fact, reconsider any large purchases and/or additional debt you are going to take on. It’s time to simplify. Turn down, not up, the expenses faucet. Lower your monthly fixed payments. In most cases, cut out buying what you don’t need.

After addressing all these “firsts,” you should get with your, or find a, financial advisor. Parkinson’s progresses at different rates depending upon your age, your physical fitness, what you eat, where you live, the disease itself, etc. You will need to plan ahead so that you don’t run out of money after you are unable to work in your profession. This should be balanced with enjoying the limited number of years that you will have to ability to do the things that you always wanted to do: travel, etc.

Some medications have side effects that result in addictions: gambling, sex, etc. Making your financial advisor aware of this may prevent you from losing your life’s savings. Knowing this may help you resist infidelity and other newly formed obsessions.

You need to realize that Parkinson’s has an effect on your ability to multi-task and your short-term memory. I once paid my credit card bill twice having no memory of paying it the day before. Maybe turn some responsibilities over to your trusted care partner or financial advisor.

Recognize that, although Parkinson’s is a progressive, degenerative disease, eating a healthy diet and extensive exercise has been shown in some individuals to slow, stop and even appear to reverse the manifestations of the disease. So, get a plan together, maybe with the assistance of your local support center, nutritionalist and fitness trainer to improve your lifestyle and stick to it. I did just this and 15 years into my Parkinson’s am healthier than I have ever been in my life even with Parkinson’s.

Finally, it is time to deal with the feelings that you repressed in order to get through the practical issues. You likely are experiencing, or will experience, denial, anger, sadness, depression, fear, uncertainty, loss of self-esteem, loss of perceived self-worth, lessening of self-image, and reduction in self-confidence. You will need a good therapist. Again, contacting your local support center for a list of doctors familiar with PD is a great start.

Not to add to your depression, but I want this Article to be complete that there are minimal surprises down the road, there are some non-motor issues that may rear their ugly heads at an earlier age than is “normal.” I even sometimes refer to my Parkinson’s as “accelerated aging.” These include: experiencing something as simple as a cold in a more robust and longer lasting way, eyesight issues, bathroom issues, rounded shoulders, back problems, non-specific irritability, restless leg syndrome, trouble driving, and bedroom issues (both sleeping and sexual), to name a few.

Some of these can be treated or, at least, lessened with therapy (especially deep tissue massage), rest, a healthier diet, changing up your daily exercise routine (as supervised by your fitness instructor) and sometimes medications specific to an issue (as prescribed by your doctor).

I waited ten years into my Parkinson’s before taking care of me (shame on me). I found the key to be a healthier diet and more vigorous exercise. I used to get on the elliptical once a month for 10 minutes and called that exercise. Now, 5 years later, I am as fit as I have ever been in my life.

I started out on the treadmill and worked my way up to one hour of either boxing & core fitness training or one hour of hot yoga. Add in my healthier diet and I got on the scale one day and it read 215 and, what seemed like the next day, tipped the scales at 170. The quicker that you start this healthier lifestyle, the better you will feel and your symptoms may actually be less apparent.

And one last (admittedly self-serving) thing you should do is to go and see as many inspirational speakers as you become aware of, especially ones who have Parkinson’s. In addition, read as many positive, self-help books as you can or listen to as many positive readings of such books as you can, especially ones written by someone with Parkinson’s (again self-serving since my book Decide Success, is available from Amazon in written and narrated Kindle format).

Staying positive will give you strength.

Love will give you strength.

Faith will give you strength.

John Baumann, Inspiring Success Speaker, Author of Decide Success – You Ain’t Dead Yet, Success Workshop Facilitator, University Faculty & Attorney (JohnBaumann.com – jmbaumann110@gmail.com – 502.262.3300)

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