There has been concern regarding the “made-up” stories of someone having Parkinson's disease. What I mean is this – I have heard that some people with PD have been told by their spouse, a friend or family, or another caregiver that their “faking it” or “it's all in your head” (no pun intended). Some have even gone to the doctor, only to have the doctor (not a specialist in PD) tell them (the patient) that they're just going through a phase of depression and eventually, they'll get over it.
You don't get over Parkinson's disease.
Let me begin by telling you a tidbit of my story.
Around the age of 30, I started experiencing some strange things. I was getting extremely tired. Not so strange, I know. I did have three small children. But, among other things, my eye began burning and I kept seeing bright reds and yellows. I suppose you could say that was the symptom that got me to the doctor. The eye doctor.
Before my eye exam, I explained what was going on to the optometrist – that my eye would painfully burn and that I was seeing 'fireball' type objects. I likened them to the fireballs in the Mario Brothers Nintendo games my kids would play. During the middle of my eye exam, my eye doctor slid over to the light switch on his little black stool and flipped the lights on. Something he had never done before.
“Has anyone in your family ever had MS?”
My heart sank. I knew what MS stood for and it wasn't milkshake. I vaguely knew what MS was and I knew it wasn't good. I answered. “No.”
At my response, he excused himself and walked down the hall and brought the ophthalmologist back with him. Off went the lights and the ophthalmologist examined my eye. The lights came back on again.
“Your optic nerve is hemorrhaging. What you're seeing is blood hemorrhaging through the nerve and that is what is causing the burning sensation.”
According to the two doctors standing there, Multiple Sclerosis, Rheumatoid Arthritis, and Lupus can often begin with what was happening inside my eye. However, there was one other thing it could have possibly been and they immediately had me come back in the morning to have an MRI of my brain done, to make sure it wasn't a brain tumor pushing on my optic nerve. An MRI would also show if there was any build up of myelin on my brain – another symptom of MS. The MRI came back negative for a brain tumor but showed some very slight myelin build up – a symptom of MS if the build-up had been greater.
Eventually, they called it Lupus and treated me accordingly for it. Ten years later, I was diagnosed with Young Onset Parkinson's disease. The symptoms have been consistent with all I've read about Parkinson's disease. My neurologist and I both agree that they misdiagnosed the PD for Lupus and this time around, the YOPD was the correct diagnosis.
The point of me sharing 'my' story with you is to show that often times certain diseases may ravage our bodies and never be seen with the naked eye. No one else could see my eye hemorrhaging and what was causing the awful burning I could feel (and see). But it was real.
Now, for the last 10-20 years, I have PD, as do so many others who thought they were signing up for one thing in this thing called L-I-F-E, only to find out they were given another. A life of leisure possibly gone wrong. At least gone in an unexpected direction.
What does Parkinson's disease look like? That all depends. First of all, it is different for everyone who has it. Some may shake uncontrollably all the time, while others shake less but have terrible back and/or shoulder and neck pain. Some can smell the slightest fragrance, while others bemoan the fact that their sense of smell has disappeared completely. Some sing to strengthen their faltering voice, while others can still yell up a storm. Some have a difficult time with walking – others run marathons.
However, most people don’t and most likely won’t ‘see’ these things: You won’t see the restless legs that keep a person with PD awake half the night, pacing the floor to get it to stop. You may miss seeing when the fall, due to being off balance, scratching up their forearms and elbows. You won’t see them struggle while getting dressed because they can't move their fingers. You won't see the pain they live with day in and day out or the muscles in their body that seize up and cause their toes to curl under or cramps throughout their body as if their muscles are twisting together like they were a wet dish cloth being rung out. You won't see them struggle to take their pills because their throat muscles are quitting to work properly.
The fact is, you won’t see a lot symptoms common for PD or MS or Lupus, etc., even if they are visible, because you may not really understand the disease or know what to look for. But, the PD patient is fully aware of what is going on inside of them and no one believes them because they can’t see it and think they’re pretending that they have the disease because they want attention.
May I ask a favor of those who find it hard to believe that person you think is just acting? Don’t dispute what they are trying to tell you or what they are dealing with. To lose the support of a spouse who thinks you’re merely putting on an act can be devastating to the one suffering. If you’re in denial over what your spouse has been diagnosed with, seek out a support group for caregivers.
Whatever you do, don’t push their diagnosis away and pretend nothing’s wrong. Believe them or they’ll seek support somewhere else. Is that really what you want? To belittle their pain, their struggle, their loss of dreams will push them away. And, ask yourself, why would anyone want to pretend to have such a disease?
And PD person, if you’ve got a doctor that doesn’t believe what you’re telling him, it's time to get a new doctor.