What Mirapex Can Do

Weeping Willow
Weeping Willow

The drug Mirapex, which is often prescribed to Parkinson’s disease patients, can have side effects. Most all drugs do, to some degree, with one person or another. Everyone reacts differently to medications. You can watch a recent interview with Michael J. Fox and he will tell you that most of his rocking movements are due to drugs he has taken. That can be part of having Parkinson’s Disease (PD).

With Fox, you can see the effects. Yet, there are some side effects from drugs that go unnoticed and for most, these are physical reactions. Nausea, headaches, dizziness, etc., to name a few. But what about a side effect that no one wants to talk about? What if the medication you were taking was what was causing the bad habits you had begun and you were too ashamed to tell anyone about it? What if no one believed you had never even had an interest in the silent sins you were continually focusing on nowadays? Things like gambling. Things like sex and pornography.

Mirapex is becoming more widely known for the ‘secret’ side effects that are running rampant in its patients. The worst partis these people – patients – are suffering, blaming themselves for their broken relationships and their downfalls. They blame themselves for losing their homes and do not even realize that a drug may be the culprit for their behavior.

The internet, while often being a trap to bad habits, can always be a shelter for some who do not know where to turn. I have a website that focuses on encouraging PD patients and offering hope. I am on Facebook, constantly inviting others with PD to be a part, in either following, contributing their experiences, or writing in if they need a listening ear, a friend.

I had a fellow contact me on Facebook the other night and share his story – one that is more common than we realize. He was on Mirapex, ingesting th drug faithfully at the proper times and intervals. However, unbeknownst to him, something in his brain was reacting in a negative way to the Mirapex. He began fantasizing about women. He began indulging in pornography.

For some, it can stop there. For some, they have go on to lose lifelong relationships that had been built on trust and commitment. Spouses of PD patients have found that the once so-called trust and commitment they once had has now disappeared. It has been replaced with Parkinson’s and a drug they continue to take because they don’t know any better. They are afraid to talk about their behavior with anyone and tHereford never find that it could very well be connected to their medication. After all, side affects like gambling or pornography can’t really be from a drug. Or can they?

Each time I see my neurologist, he asks me if there are any changes. I do not take Mirapex anymore (due to its decrease in effectiveness), but the drug I do take (Requip/Requip XL) has been known to mimic Mirapex’s side effects.

PD is hard enough to deal with without the issues of serious side effects of taking such potent drugs. We are not talking about a headache. We are not even concerned with nausea with this baby. We are talking about relationships destroyed, jobs lost, lives changed forever. Not from the disease itself, which would be understandable, but from what begins to happen when our drug therapy goes haywire.

It is because of things such as this that it is important to faithfully and regularly monitor any reaction to any drug. It is important to monitor and record any changes that occur, whether physical, mental, or emotional. Some drugs alter moods. Write it down. If it goes on for more than a week, do not hesitate to call your physician. If a habit begins to form afree beginning a new drug, do not waste time consulting your doctor about it. It is quite possible that it could be linked to the new medication. When you pick up your new prescriptions, ask the pharmacist about the side effects. Most pharmacies now include a flyer with the side effects and information on medications. It is worth the read to know.Requip

Parkinson’s Disease: Can you really call it INVISIBLE?

©2011 Sherri Woodbridge
©2011 Sherri Woodbridge

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.

  • Grief.
  • Depression.
  • Despair.

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.

Joy.

JOY?!?

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.

Looking the Part

imageInvisible disease:
A disease that is not necessarily visible to the human eye; hidden; concealed from others.

Parkinson’s disease (PD) can be known as an ‘invisibile’ disease. Because PD is most commonly known to be a disease that is known by tremors in the extremities and shaking. For those that don’t realize that there are some patients of PD who don’t actually experience the shaking or tremors, it can seem the patient is “faking it” or “isn’t that bad.”

Ever heard those comments?…

I have heard of some people with PD who take over fifty pills a day just to feel ‘normal’ and I can assure you that their ‘normal’ is much different than most everyone’s normal. Instead of having obvious tremors in the extremities, a person with PD can experience tremors on the inside, making it even more incomprehensible to someone who doens’t knwo much about PD and assumes you must have tremors to have the disease.

“But I do have tremors,” the patient may defend. “You just can’t see them. They’re on the inside.”

The other person is probably thinking you’re crazy. But it’s true and when I think back to when my symptoms began, I can remember feeling tremors inside and feeling like I was the one going crazy and feeling I couldn’t do anything to make it stop.

“But you don’t look sick,” your friend might comment.

What does a person with PD look like?

Well, one can have brown hair and blue eyes, forty-ish, have tremors and nothing else. One can have gray hair, 72 yrs of age and walk stooped, shuffling their feet, seem a bit confused, have tremors and more. One can be an athlete, run marathons, never seen to have a physical problem in the world. There is a saying, “If you’ve seen one person with Pakrinson’s, you’ve seen one person with Parkinson’s.

When I went to the World Parkinson’s Congress a few weeks ago, I think the thing that struck me most was the diversity how PD affected the people with the disease. No two people wore it the same. I have PD and you’d think I’d not be surprised by that, but I was. But, going back to the invisible disease thought and knowing that PD is an individual disease, you’d think it wouldn’t have surprised me to hear from several other PD patients, “You don’t look like you have PD.”

So I ask again, “What does a person with PD look like?” Maybe I should ask, ‘What is a person with PD suppose to look like?’

Most people would undoubtedly bring Michael J. Fox to mind, using him as the ‘poster child’ for a frame of reference. The only problem is, he kept his disease hidden from the public for a good ten years so while it was progressing for those first years, he “didn’t look like he had Parkinson’s.” He didn’t “look sick.” He didn’t “look that bad.” Maybe he was “faking it.”

“Smile. It can’t be that bad,” I have heard someone say to me. How do you explain to an absolute stranger that you have a disease that takes away your smile and even though you may be overjoyed on the inside, you don’t appear that way on the outside? How do you explain that yes – yes it can be that bad when your meds aren’t working well and you can barely move your back and neck due to the stiffness and pain and you could go on and on but you don’t.

You don’t look “sick” when you are struggling with heart issues, Alzheimer’s disease, a kidney problem, find a lump in your breast, deal with twisted intestines, suffer with hemorrhoids – need I go on? And yet, we can have a bad case of acne, a broken arm, a wound that won’t heal, or a dislocated shoulder and you’re not sick.

There is a crazy misperception that in order to be sick, the rest of humanity must have evidence that convinces them you’re not faking it and it just may be worse than they understood it to be. A disease they couldn’t necessarily see and you, as the patient, may not be able to fully explain.

An invisible disease. A disease that may not look like anything, but if you’ve got it, it’s something indeed.