PD Stole My Smile

imageSerotonin, norepinephrine and dopamine are all chemicals that are involved in regulating mood, energy, motivation, appetite and sleep. In addition, the frontal lobe of the brain, which is important in controlling mood, is known to be underactive in people with Parkinson’s. It’s no wonder that Parkinson’s patients may look sad. We have every right –our brain is messed up. But looking sad and feeling sad are two different things.

PD recipients have three strikes against them in the mood-controlling department, the first mentioned above. The second is that we can sometimes wear what is referred to as a ‘masked face’. This is not an optional ‘mask’ they wear — the possibility of depression being present. No, it is one of the gifts that Little Monster (aka PD) gives to us. Because of the disease, the PD patient has no control over the facial muscles that have decided to give in and not hold our smiles anymore. So naturally, because the majority of the public hasn’t a clue what’s going on behind our faces (and some PD’ers I’ve met), our lack of expression can often be (and believe me, it is) misconstrued as a sign that we are sad or depressed. This is not necessarily true.

We have this other part of our brain called the frontal lobe, an important place in the brain that helps to control moods. The problem here is that for PD patients, it is known to be underactive, which gives us the third strike against control over our moods.

I have been asked several times, “Why are you so sad?” or, “Are you depressed?” or, “What’s wrong?” I’m not sad. I’m not depressed. In addition, nothing was wrong until I was asked all those questions and then began wondering that maybe something was wrong. Maybe there is something I’m supposed to be sad or depressed over and I just haven’t figured it out yet. A surefire way to get someone feeling low (at least, for me) is to tell him or her how ‘low’ he or she looks. Works every time. It’s called the power of suggestion.

I was sitting with a friend the other day, listening to her tell me about things in her life. As far as I knew, nothing had changed in my appearance. She then asked, unexpectedly and interrupting herself, “Are you okay? You look like you’re going to cry.”

I was fine. However, then I questioned myself. Was I fine? Why do I look so sad to her? Do I feel sad? Am I going to cry? Should I cry? Is there something to cry about that I missed? Alas, after a thorough examination of my brain, I concluded that yes, I was fine. I didn’t feel sad, but for reasons beyond my control, I looked sad. I chalked that up to Little Monster stealing my smile.

We can try and look on the lighter side of this issue, but for some PD’ers (and others), depression is not only very real but it is a real battle. Dr. Anthony Santiago once stated that in some PD cases, depression is the first symptom of this disease. Through the course of living with PD, it can continue to be a symptom for the reasons stated above, in regards to the chemical make up of our brain. In addition, the patient is daily staring a chronic illness in the face. That in itself is enough to cause depression.

So, what to do? Make sure you are being optimally treated for PD. If you’re not receiving the correct medications for you for poor sleep, constipation, fatigue, freezing episodes and more, these can contribute to depression. That is why you need to discuss anything that may be relevant or not with your physician to get the best care. What we think may not be associated with PD, may very likely be.

It goes without saying that regular exercise is an important part of being at your best, not only physically, but emotionally and mentally as well. I find that if I’m striving for better health and increase my exercise, I tend to make better choices when it comes to food. I look at it like – I just walked a mile and I’m not eating that Butterfinger and cancel out what I just accomplished.

It’s a proven fact that if we get up and get going we’ll feel better mentally, as well. Depression means just ‘how it sounds’. It depresses the individual within whom it dwells. It saddens them, makes them feel discouraged and disheartened. While this is happening, the individual is focused on wanting to feel better, to feel something. More often than not, the individual struggling with depression focuses on himself and how bad he may feel.

Chip Ingram, former Walk Thru the Bible president, once told a story of a doctor he knew who was treating a patient for depression and that nothing he seemed to be doing was working. He finally told this patient to go to a certain room in the local hospital and read to the cancer patient in there each afternoon. Within a week, his depressed patient’s spirit, emotional well being and mental outlook had improved dramatically. The once depressed patient realized there were others worse off, by taking his eyes off himself and put them on another.

There are, however, many cases of depression that don’t fit into that theory of treatment, some due to chemical imbalances or injuries that are difficult to treat, even with medication. These need the regular and constant attention of a qualified physician and/or psychologist. Sometimes there are just no easy answers for treating depression and since each case is individual and unique, so are the treatments.

If you feel you tend to get depressed at times, or are feeling sad, think about joining a support group, if you haven’t already done so. Start a hobby. Get involved in a recreational or social activity. Dance is becoming more popular and well known for its benefits to PD patients, in terms of exercise and is a great way to meet new people. I’ve never met a depressed person who was dancing.

Many effective and safe medications have been used to treat depression in people with PD. If you haven’t already, discuss your concerns with your doctor and ask if another treatment might suit you better.

Remember, as a PD patient, caregiver, or friend, progress is being made every day towards finding a cure. Until then, get the best treatment you can, tailored to you. Your doctor can only treat you as well as you are willing to confide in him with what you are experiencing.
Living with PD, offering support and encouragement while pointing you to great resources are what we’re about at Parkinson’s Disease and Deppression. Please feel free to visit us at: http://www.parkinsonsjourney.com

Taking Care of You

imageI attended a conference on Parkinson’s disease where one of the speakers stated, “Hope is medicine.” In so many ways, that is so true. Fyodor Dostoevsky once said, “To live without hope is to cease to live.” As a Parkinson’s patient, it may be hard at times to feel hopeful.

One of the first symptoms that is often overlooked while Parkinson’s is making its mark on your life can be depression. By the time you are diagnosed, you may feel like your whole world has caved in and diagnosis is like a thousand ton weight of steel that has just landed on top of you as you lay there in a pit of grief.

A hard thing for us to talk about, much less deal with as a people in general, is depression. The difficulty of dealing with it only increases when you have a condition like PD, which can lend itself to making depression one of its star players. It can play a toll in the relationship between the patient and his/her caregiver, especially if we, as the patient, neglect or forget to take our ‘happy’ pills. It is my firm belief that if we are not taking care of ourselves emotionally and mentally, it will be a struggle to care for ourselves physically. When our mind is not functioning well, we tend to look at our disease with a somewhat distorted view, making it even harder to handle. Often, the distorted view only continues in a mental downward spiral.

If you’re struggling to find anything good in living with Parkinson’s, is it from viewing life with an outlook of despair and hopelessness? Do you think you may be someone who would benefit from an anti-depressant? Let me be clear – this is nothing to be ashamed of. Having PD is real and so is the depression that can come with it. I have told my husband (my caregiver) he has my permission to ask (when I feel like giving up in life) whether I’ve missed a dose of my meds. I can, within two missed doses, go from having a good day to wanting it all to end. It’s extremely hard, if not impossible, to care for yourself when your desire to keep going is all but gone. However, when your desire to live your life to the fullest is there, in spite of PD, this life can be a a pretty wonderful thing.

How can a life with Parkinson’s disease be a wonderful thing? As with any disease, it makes you take a different view of life. Your life, in particular. Where you may have once thought of yourself as insignificant, worthless, unimportant or any of those lies we tend to feed ourselves, you may now realize that you are of value. Why else would you seek out a doctor’s care? A support group? Because you matter. You may not have worked through the whys or the hows but somewhere, consciously or not, you have realized that your life means something.

Because your life matters, your quality of life should matter to the fullest extent in which you are capable. For example, if you can offer some time to one less fortunate – reading to a hospital patient, listening to a homebound veteran tell of his experinces – do it. Doing activities like this can often remind us that things could always be worse and how good it feels to be able to help another. If you can sing, sing out loud. It’s good for the heart and for those with PD – it’s good for the voice. If you love to do artsy things, don’t stop because someone told you have PD. If you have to change to a different art form, change. Just don’t quit. Walk, if you can. This is good for the muscles, good for your heart, good for the spirit. If only intentionally around the house, walk. Talk to someone. When we feel like a burden, we can often shut down. This is when I find it most hard to open up and when I find it most needful to do it. Talk to someone. Let them remind you of the truth – you  matter. They’ll remind you that you are here for a reason and gently ask, “By the way, did you take your happy pill today?”

Living with Parkinson’s disease is downright hard. It’s a day to day battle of pain, a fight for control, and an acceptance of the unwanted. It’s learning how to live a new normal while everyone else continues with the familiar. It’s learning to realize you matter and there’s a reason you were chosen to carry this load, to walk this path. So, while on this journey they call Parkinson’s disease, take care of you. Take good care of you. And don’t forget to take your meds.

“If you’re reading this…
Congratulations, you’re alive.
If that’s not something to smile about,
then I don’t know what is.”
Chad Sugg, Monsters Under Your Head

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