I was discussing with my sister’s husband a presentation on what to do when diagnosed with a chronic illness. I was going to present this to People with Parkinson’s (PwP), like me, at a conference.
His astute response was, “Aren’t you too late for most of your audience members?” He followed up by asking, “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 than 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 critical immediately at the time of their diagnosis. 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…”
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 was 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.
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 World Parkinson’s Program and 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, bathroom issues, 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.
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.
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.