I might be asking for trouble for writing this, but here goes…
I have always been a good little patient. I have listened to what my doctors say and done everything by the book, so to speak. But as I get older with this little monster as my constant companion and admittedly becoming more forgetful when it comes to my medications (and other stuff), I am also becoming stronger in myself. I am finding that in order to survive, I am having to be tougher. Stronger. More sure of myself. Who I am. And that means if I take less pills than the doctor prescribes and am still alive, then so be it.
Within 3-4 years of being diagnosed with Parkinson’s disease, I remember taking up to 26+ pills a day, either prescribed and over the counter stuff that would aid in my symptoms due to PD. I took them all. I had complete faith in my neurologist that he knew what was best for me. But, even though I feel it is blasphemy to say this, I’m going to say it/ask it. Did he know best? Does anyone?
I’ve had DBS (Deep Brain Stimulation) and perhaps it is because of this wonder surgery my PD can appear to be ‘invisible‘ . I assure you, for so many reasons, visible or invisible, my fight with PD is real and ongoing.
But, I am taking less and less in the pharmaceutical area of the disease. This past year I began to get sick after taking pills I have taken for a decade. Morning, noon, and night. So I decided to take matters into my own hands and find out which one was the culprit in making me not want to face another day of being sick. I had many to choose from.
After bringing up the subject with my new neurologist, we decided to go with the Amanadine, then the next visit we went with the Azilect, then the Aricept. Then the sickness stopped. When beginning this regimen, I was on doses of pills of many different colors that added up to approximately 16 pills a day. Every three months prior to July, my current nuerologist would make adjustments to my DBS unit so as not to have to up the medications more.
After attending the World Parkinson’s Congress in September, I keep coming back to a comment a doctor made to a woman with Parkinson’s disease who asked, “How do you feel about patients taking the reins on their own care and adjusting their treatment program as they see fit?” The doctor, an MDS (Movement Disorder Specialist), replied, “I don’t have a problem with it as long as you tell me about it after you’ve done it.”
Of course, a patient is limited to what they can do in regards to medications but I am finding fewer pills are working well for now. My doctor is aware of all the medication I am taking and the changes. I wouldn’t do it without his approval. The one thing I do notice – my wearing off is greater. It is not as gradual and if I don’t stay current, I shut down quickly. That is somewhat scary to me.
For now, I am grateful less chemicals are filling up my flesh, because I know, for now, it’s only temporary.
You may not be able to see it, notice it. But, be sure of this – even though you may not be able to see it or notice it, but if you’ve got Parkinson’s disease, it’s anything but invisible.
I can’t tell you how many people with Parkinson’s disease (PD) say that (when gathered within some sort of PD group), they can’t stand it when they tell someone they have PD and the response is, “You don’t look like you have Parkinson’s disease.” The thing is, for as much as they can’t stand to hear someone make that remark, they can be just as guilty for saying it.
While I was attending the 2016 World Parkinson Congress in Portland this past September, I had several people make that comment to me and except for one (and she was married to a man with it). You have two reactions when that situation occurs: you are somewhat glad you present yourself as ‘Parkinson free’ and on the other hand, you feel like others think you’re faking it.
What, exactly, is Parkinson’s disease? What is PD supposed to look like? Flailing and shaking – acting like you’re drunk as you walk down the street? Parkinson’s disease can look like whatever it feels like looking like and it goes much, much further than that. It doesn’t limit itself to our imaginations of what this disease should or should not be, what it is or it isn’t. It can expand the borders of our minds or confine them.
And – Parkinson’s can be a concealed disease, visible to no one but the one who has it. For a while, anyhow.
Severe headaches, vision problems, swallowing problems, speaking problems, choking problems, drooling problems, smiling/facial expression problems, neck stiffness problems…
Did you notice anything? These are all symptoms of PD from the neck up and even this is not an all inclusive list for that area. Many people are surprised to hear such a list but then begin to realize tha.maybe it’s true. Maybe PD can be considered an invisible disease simply because they didn’t know it could envelope so many different areas.
When my symptoms began to emerge (tremors, for example) and become more obvious to the outside world, if I was standing I would either fold my arms together or I would stand with my arms at my sides and clench my fists until the tremors would stop. If I was sitting, I would sit on my hands. This became such a habit of ‘concealing’ my disease that I didn’t even know I was doing it. It took my doctor to point it out to me.
Among the symptoms (either from the neck up or from the neck down), that can plague a person with PD, there are a few which get completely ignored because they are so often, hidden so well.
There is grief for those things lost and for the things that may be lost. This isn’t negative thinking in regards to things yet to come. It is a case of being realistic.
There is depression either from the disease itself (an actual symptom of PD) or from life itself, which in turn can magnify the depression caused by the disease.
There is despair. A loss of hope that things may improve. This can be easy to experience when you are continually reminded by others (or by yourself)that things will not improve, there is no cure, and grief can be your constant companion.
The symptoms may differ slightly to greatly when comparing different chronic illnesses, but the ‘ignored’ symptoms can be seen across the board in Diabetes, Multiple Sclerosis, Alzheimer’s and more. They can be included in an extensive list of diseases that are able and do change the course of one’s life. Whether slowly or overnight.
But, I think that there is one symptom that is unique to people with PD in terms of being invisible.
Diabetes, MS, Alzheimer’s and others cannot be blamed for taking away your smile. Not literally. We can allow anything to rob us of joy, to rob us of a reason to smile. But, only PD (as I know it) can literally take your smile away, causing you to appear to others as sad, depressed, sorrowful, and/or full of despair. You aren’t but others think you are. This is due to the face muscles losing their ability to work properly resulting in the inability to smile. In turn, you can feel one way and actually appear another. People don’t see the joy because it’s hiding in the muscles that are concealing your smile.
I have honestly heard the following comments by strangers and friends/family, with or without PD alike:
– Don’t look so sad! (I include an exclamation because they did in their delivery.
– What’s wrong?
– You look like your mother died! (Again… delivery.)
– Why do you look so depressed?
– Cheer up. Things can’t be that bad.
I have learned (from having PD) that people with the disease can appear to be ‘drunk’, so when you’re about to judge someone who is acting ‘different’ – stop.
I have learned (from having PD) that not only is each day different, but one moment to the next can change, especially if your’e medications are wearing off. You can be running with your grandson one moment and tripping and falling the next. Yes, that’s how fast it can sometimes happen.
I have learned (from having PD) that if a person is not smiling, it doesn’t mean they are depressed, sad, or the like. They may very well be in a better state of mind than you are. So about making those mood observations above – just don’t.
Instead, have a seat. Sit and talk to me and tell me about your day. Tell me about your grandchildren. Ask me about the flowers I planted yesterday or the birds I saw. Tell me about my family. I will more than likely smile. Maybe cry, depending on what comes up. But I can guarantee, the joy will be there just the same.